My Trisomy 18 Experience

It's been a year...

2011-03-08T21:51:00.002-05:00

I have neglected this for a long time. I've thought about posting several times, but for some reason I chose to ignore my small obligation. I'm on Facebook everyday, updating my status, but I don't take the time to come on here. I thought if I ignored this, I would get over my loss. I needed a wake up call and quickly learned that was never going to happen. I will hurt forever, but it's all in the way you manage that pain.

Recently, I've become friends with a woman that lost her son Nolan Alex. I've been paying special attention to her journey. I've been feeling her pain, and I mean literally feeling the hurt and anger that she is going through. I look at her pictures, and I read her posts and I cannot believe how I've never met this woman or her family, but I feel an intense connection to her. I cannot explain it. Amanda, please know that without knowing you, I've cried for you and I've been praying for you everyday.

So what has been happening in the last year? My boyfriend and I broke up, made up, broke up and then made up again. We are now living together, and attempting to make a new relationship. IUP told me they would never give me a degree, so I left. I've applied and been accepted to Seton Hill, studying Elementary/Special Education. It'll take 2 years, but I'll get a degree.

The most important thing is I've learned. I'm learning to miss my son without allowing it to consume my life. For the first 2 years after losing Caleb, I felt like life was not worth living. I acted as if no one else felt like I did. I felt alone. Now that I've taken the time to be single, and focus on my life. I believe that watching others go through their journey gave me hope for the future. I want to be the strength for future T-18 mom's. I want to show that one day, you'll be able to feel like you'll be able to move on. I love my moms. I will always be there for you.

So that's a year in a nutshell. I will attempt to keep up with this, but I know you guys aren't holding me to it. I love you all for keeping up with me.

Lindsey

I'm having a bad baby day...

2009-09-30T10:49:00.003-04:00

So I'm on Facebook and recently it's been wearing on me. I've been so strong and push through my days as best as I can. But now, I'm watching people have babies and seeing their joy of bringing their child home. I don't know why this is bothering me as much as it is, and this is making me angry!

I think part of it is my hatred at myself for not being stronger. I'm a bigger person and I should be happier for these people. I can't bring myself to realize that this will one day be me. I hate myself for thinking that I want another baby now because I've been fighting to get through that initial feeling when I first lost Caleb. My son would not be proud of my weakness at this point. He didn't want this for me.

I know it's a short blog, but I just needed to blow off some steam.

I'll just keep telling myself what the ignorant people have told me: "God has a plan and one day you'll have a healthy baby too..."

I'm back in school!

2009-09-25T10:23:00.002-04:00

So I know it's been 3 months since I've blogged, but I've been busy and thinking about different things for once. I started going back to school this fall at IUP. It's been a good experience. I've been going to all my classes and busting my butt to make my baby proud!

Since all of this has been going on, a lot more has happened in my life. I started dating again and I met the most amazing person! Joe has been so understanding about my situation and he listens to me when I have a bad baby moment, and offers his comfort. He was a surprise in my life, I wasn't expecting to find this person and I can't even believe sometimes that he is real. I don't want to gush too much, so I'll move on (especially since some of you might get sick of hearing about it!)

I haven't been mentioning Caleb to people at IUP too much, especially since I don't want people to look at me and think, "that poor woman, how can she deal with this?" But recently, Caleb has been finding ways into my classes and making sure that people hear his story.

In my Wednesday night class, we were discussing mental retardation and what characteristics come with it. Well of course, Trisomy 18 came up. At that moment, I began shaking, sweating and feeling my chest tighten up. I wasn't expecting it and I was afraid of what I would say. When the young woman finished her presentation, I found my hand in the air and I began talking about Caleb. I think I talked about my experience for 20 minutes and began that whole "this should be required to be taught in classes" speech. I got to show a picture of him in class and everyone was really touched by my story. In the days since, I've gotten emails from people in the class telling me how much it meant to them for me to offer my experience to them.

A friend from high school emailed me on Facebook and told me that my blog had inspired her to so research for a psychology class. I was surprised by this as well. I didn't realize that Caleb had such an impact on the people that have never met him. It's things like this that make me swell with pride and gush about my little pumpkin. The thing is, I'm just a small person who started a blog so that someone would might read it and realize that they were not alone in their fight. That even a young person could lose something. That pregnancy doesn't always go as planned. I didn't realize that it would be as big as it's become. I don't have a lot of followers, but there are people out there, whether I know them or not that have emailed me on Facebook or to my personal email telling me how much this blog has meant to them. I don't expect the praise, but it definitely makes me feel that I kept my promise to Caleb. I swore to him that I would not allow his death to be in vain. People know about him and love him. I couldn't ask for more.

I will try to keep up with this a little better, but I'm super busy. School, work and my Tuesdays spent in practicum are a little rougher than I expected. I love you all for being patient and still following this blog. I appreciate the continued support!

Lindsey and Caleb

Father's Day.

2009-06-21T11:57:00.002-04:00

So this is what Father's Day is like without Caleb. Not as rough as Mother's Day, but considering I would have been both...it still hurts. I'm doing better as far as physically and mentally hurting, the emotional problems are still there. I've noticed there are still moments where I feel empty inside and feel like my life is missing something huge. It's a weird feeling.

With Caleb being stillborn, sometimes it feels like what I did was all a dream or not real. That's a weirder feeling. It was like I gave birth to a baby doll. It's a hard concept to explain, but that's how I feel. I just wish I had seen him breathe once, blink an eye...something to give me that idea that he was real. I felt him kick and punch me, but it's definitely not the same as seeing him alive.

Today I wonder about Caleb's father. I don't care what he's doing or who he's with, but I wonder if he's celebrating Father's Day for the child he never knew. I wonder if he thinks he's entitled to knowing Caleb or deserving of at least a card. For those who don't know, Caleb's father left me when I was 4 and 1/2 months pregnant. To this day, he still has no idea what happened. What's worse, he doesn't know that he had a son. Part of me is angry, the other part makes me feel sorry for the asshole (first swear word in the blog!!!). Let me rephrase, I don't feel bad for the fact that I never told him what happened; he doesn't deserve to know. However, I feel sorry for the fact that he's too lazy or too scared to even contact me. He probably believes I'd be coming after him for child support.

I wonder if there will be a day in the future when we pass each other in public and he'll finally ask me about our child. Would I have the strength to tell him to leave us alone? Would I tell him what happened to Caleb so that I can finally cut all ties with him? Would I just keep him in dark? There are a million scenarios that run through my head constantly. I know for a fact that he's trying to crack the mystery of the child he left behind. People have told me about their encounters with him in the months since. And I thank all of those people who have had the strength to tell him they know nothing, or have just simply ignored his requests. I know that my best friend has had moments where she wanted to tell him what happened so that he'd leave her alone. I don't blame her. There's no need for her to deal with the constant harassment.

I still don't know to this day what I would do in the event I see Caleb's father again. I believe that my Caleb (and only MY Caleb) would give me the answers if that were to ever happen. He's keeping an eye on me and he knows my struggles. He'll be there with me if and when that contact happens. Until then, I celebrate Father's Day knowing that my son loves me as his Mommy and Daddy.

To the fathers that have been there for their child, and this includes my magnificent father; have a great day! Thank you for kissing our boo-boos and making sure we had a shoulder to cry on when we needed it. Thank you for hugging us on a daily basis, and doing the silly things (intentional or otherwise) to keep us laughing over the years.

To my own father: Thank you for being the strength I needed before and after Caleb's diagnosis. You were the only man in my life at the time, and you were the best I could ask for. I don't know what I would have done without you during my times of tears. Even when I came close to a breakdown, you stood there with me. And I want to thank you for the memories of watching you hold my son. That is something I will carry with me for the rest of my life. Pictures aren't enough to describe the way you spoke to him or the way your face lit up the first time you saw him. I love you Daddy with all my heart!

Online Class Drama!

2009-06-17T17:42:00.002-04:00

So I'm taking a Developmental Psychology class online this summer. Of course, it's nothing what I expected and it's harder to teach yourself. Anyway, my first paper that was to be done for this class was writing a letter to a future child. FIGURES!!! I read over the guidelines a million times and thought to myself, "I'm doing better, but I'm nowhere near being able to write to a future child." I emailed my professor and told her about my situation with my little darling. She was completely supportive and understanding. She allowed me to alter the assignment so that I could write a letter to Caleb and my mourning process. Just like the eulogy, it was one of the hardest things to write, and I found myself having terrible feelings toward the assignment. I was bitter for the better part of yesterday. But I had to show my strength; I wasn't willing to take a zero for it. I wrote the letter, and proved once again that I feel better when I get things off my chest. I decided to post it here for you to read. It's raw emotion at its finest.

A Letter to Caleb

My Dearest Caleb,

When I discovered I was pregnant with you, I had a million emotions go through me at one time. I was so happy to be a mother, I could burst. My heart fluttered at the thought of holding you in my arms and rocking you to sleep. I looked forward to all the first we were going to have together. I know your Daddy wasn’t there for us, but we would have made a great team. We were going to be great!

Your firsts started while you were still in my belly. The first time you kicked me, you were real. That simple gesture made me realize it was time to be a grown up. I knew it was time to give up my old ways of being selfish and immature. There were people who believed that I would never grow up and that you were not going to be in good hands. I knew better. Because of you, I got a real job and was going to get our own place. I had so many plans for us and with each passing moment, my excitement continued to grow.

I’d thought of sled riding, summer swimming, your first taste of ice cream. Your first skinned knee would have broken my heart, but I knew how to fix it and make it better with a kiss. Your grandma and Aunt Kourie were waiting to make cookies with you or teach you ways to drive me crazy. Grandpap took some time to warm up, but he was looking forward to March Madness with his new little Pitt fan. You had cousins waiting to meet you. Your Aunt Amy is a little older than Mommy, so your older cousins were really excited about the new baby. Mommy’s friend Courtney was counting down the seconds and was planning on finding reasons to come steal you for a day. Mommy’s best friend Staci was excited to have a playmate for her baby Alexis. As you can tell, before you were even a thought, everyone was in love with you. You were poised to be the luckiest baby in the world.

Mommy had never heard of Trisomy 18 before that fateful day at the hospital. I thought I was going down there to hear you weren’t grown as fast as expected. I was told it was probably something that could be fixed with some growth hormones. When the doctor told me the truth, I was devastated. Actually, there aren’t words that can possibly describe my feelings. I can only tell you it felt like I was hit by a Mack truck because I was playing in traffic. I was angry with the doctor, angry with God. How does one deal with the heartbreaking news of a child’s death? The doctor basically gave you an expiration date. I had never known what pain felt like until that day. All of my dreams were thrown away like yesterday’s trash. Instead of dreams, I had to come to terms with planning a funeral for you. I didn’t think it was fair considering what we’d been through already.

After the diagnosis, it came time to break the hearts of people who looked forward to you. Your grandma and Aunt Kourie took it the hardest. Grandma was looking forward to babysitting you while I was at work. Aunt Kourie was just looking forward to coming home from school to see you and teaching you things to make me nuts. Grandpap tried to be strong for Mommy’s sake, but inside he was torn to pieces. Aunt Amy and your cousins were just crushed because they wanted the new baby and wanted to play with you in the worst way. Staci cried and asked why this had to happen to us. Courtney came by almost every day for an update to make sure we were alright. We had an outpouring of support from people I hadn’t talked to in years.

For nine weeks, I help onto hope. I ate like crazy, trying to get your weight up, trying in vain to make you stronger. I started a blog hoping that someone would find comfort in our story. I cried a lot, even though I tried to fight it. I didn’t want you to feel my stress or pain. I wanted you to be as comfortable as possible. I’d hoped that maybe you’d be born alive and that you’d be able to come home with me, at least for a little bit. Maybe it was silly of me, but I was a mother hanging on to what little time I had left with you. Every kick was a true miracle because I knew it was you trying to pull through. You fought so hard, my little one.

When I went into labor, reality set in. There was an excellent chance you weren’t going to make it, a point driven home by every doctor that I’d talked to. I still allowed myself to live in fantasy until I knew for sure what the outcome would be. I told the doctors that there was no need to tell me they were sorry because I thought I’d have you for a while. We had the best doctors and nurses that day. They took amazing care of your Mommy and were incredibly supportive!

Giving birth was the best thing I’ve ever been through. The pain was easy to ignore. All I thought about was making sure you were coming into this world safely. I’d never pushed myself as hard as I did that day. Grandma and Aunt Kourie told me several times they were proud of me. They were by my side the entire time. Staci and Courtney waited outside with their ears to the door, and Aunt Amy came down as soon as she could. Grandpap had to work, but he was there at the end of the day.

You also got your fifteen minutes of fame as well. We had Now I Lay Me Down To Sleep come in and take pictures of us together so I would never forget your precious face or the feelings I had about that day. In March, Mommy was asked by the Tribune Review to be interviewed for an article about your pictures. I swelled with pride talking about you. You’ve made me so proud just for existing! I’ve raised money for Trisomy 18 and I’m planning more incredible things in your name. Your death will not be in vain.

When I saw your face for the first time, it was like being given the best gift on the planet. Your features were so perfect and you looked exactly like me. Your eyes were a sapphire blue unlike any I’d ever seen. I was the luckiest mother in the world! I got to spend the entire day holding you. A gift I would never replace, and I would give up anything do have just one more minute of that.

Since you’ve gone to be with Jesus, my life hasn’t been the same at all. I’ve become more adult and everyone has seen it. You never spoke a word or shown a gesture, but you single-handedly made me grow up. It wasn’t your responsibility and it wasn’t fair for you that you shouldered that burden. I thank you from the bottom of my heart for all you’ve done for me. Even though you’re not here with me physically, I feel you in everything I do. I feel your influence when I make decisions for myself. I never do anything without thinking about you first. I miss you every day, with every breath I take and every beat of my heart.

My Sweet Baby, I will never know what you would have become and that’s something I have to deal with. I’m happy you’ll never know pain and you’ve never known sin. You’re safely in Heaven watching over me and our family. I take great comfort in knowing that. Mommy loves you with all her heart. I will see you again one day, and I will have that moment to hold you again. I promise that I’ll hold you for eternity. Until then, I will dream of you.

Love you forever, like you for always,

Mommy

I'm actually doing a lot better!

2009-05-29T21:34:00.002-04:00

Recently, I've been blogging about my anger toward God for what has happened to Caleb. What mother honestly wouldn't be? I've spent a lot of time whining and complaining about how terrible my life has been, and not reflecting on the good that has come out of this tragic situation.

I've become increasingly aware of the use of the word "retarded," and I hate it. Sadly enough, it's used too often to describe people that have a lapse in judgment. I let it slide because it doesn't matter how much I yell at and tell people that it's not appropriate to use it, especially in front of a woman that has had a baby that was born with MR. I've not given up on my endeavor to eliminate use of this deplorable word, however, I alone can't be the one to stop one's usage. If everyone reads this blog and tells someone to stop using that saying, we'd be able to make a small difference.

I went camping with my sister and my best friend over Memorial Day weekend. Friday night, after we finished setting up camp, we were sitting around the table and I realized that Staci and I haven't really had the time to talk about Caleb. I've talked with my mother, Kourie, my therapist, people I work with...but not Staci. So I started the conversation, and it wasn't until Kourie and Staci both said, "Lindsey, you gave birth to your angel." It woke me up. I haven't felt my usually depressing moods since. I'm not counting out the fact that they can come back, but I've learned to manage the feelings.

Biggest thing to happen; I fitted my first ringbearer named Caleb and handled it amazingly. I was able to say his name and talk to him without tearing up. I'm so very proud of myself. I wish I could explain the feeling when you realize that you son's name is not a swear word. Simply put, it was liberating to say his name over and over without a feeling of sadness. I'm proud of myself.

So I'm trying to be the eternal optimist. Let's see if it works.

My first Mother's Day

2009-05-14T14:38:00.002-04:00

So Sunday was Mother's Day; my first without my precious boy. As I sit here, there is a picture of him sitting beside me and it hurts. I have pictures of him everywhere actually. Constant reminders that I did everything I could to help him make it here safe. Constant reminders of the love that I have in my heart for him. As much as I enjoy looking at all the pictures I have of my little man, they hurt me just as much. I would give absolutely anything to put him in my arms and kiss him again. It wasn't too bad I guess. Mom and Kourie got one of these pictures blown up and added a sepia tone to match a picture of mother/baby giraffes I had purchased the week before. The giraffe poster is more or less a metaphor of how Caleb and I were.

Tuesday was his 5 month birthday. I went to the cemetery and realized how quickly the ground around his burial plot is starting to settle. I used to be able to find him easily, but now it's beginning to blend in with the rest of it. I'm feeling a little uneasy about this. I really dread the day I go there and the grass over him isn't browning so I can easily find him. He still doesn't have a headstone, and it makes me mad that I've waited this long. I know that I have to wait for the ground to dry and settle. Ugh. It'll happen soon Caleb. I promise.

Kourie and I had an interesting conversation the other day. We decided that we're kinda sick of some people's attempt of trying to make us feel better. I've had other mothers that have lost babies and they get it. They understand what I and my family is going through. It's the people that have NO IDEA are trying to make us feel better or possibly blame me for what has happened to him.

For example, before he was born, Kourie was at Dingbat's with a friend just venting about the entire situation. She was upset that the father left, and that we were given this to deal with as well. A woman sitting at the bar overheard the conversation and turned to her. She simply said, "Well, maybe your sister did something to deserve this." She blamed me for having a child out of wedlock and this was God's punishment for being a bad person. A woman that knew absolutely nothing about me, my situation and just decided to throw her 2 cents in. I'm angry with this, but I've forgiven her. Her ignorance isn't going to tie me down and make me want to hate her.

I've heard a million things ranging from, "Everything happens for a reason," to "You're young, you'll have a healthy baby in the future." I appreciate everyone spreading their condolences, but a lot of these things are not helping. I especially hate the "healthy future baby" comment. What you people simply don't understand is that it won't matter how many babies I have in the future, NONE OF THEM WILL BE MY CALEB!!!!!!!!!! I'm truly sorry for showing my emotion here on my blog and my anger for ignorance. This is just my venting. My son was one of a kind. There will never be a replacement for him. There will never be another perfect baby with a double left earlobe, or a dimple in his chin with a perfect button nose. There will never be another perfect child with ankles that cracked when he kicked me or sapphire eyes that opened just a crack so I could see them. I can have boys in the future, but who knows what Caleb could have done. Just please, if you see me in public and you have NO idea what it's like to lose a baby, just tell me you're sorry and move along. I don't want any sympathizing with someone throwing God in my face. I beat myself up enough everyday trying to figure out why it was my son that had to go back to Heaven only 10 months after knowing of him.

Wondering if I'll be happy again...

2009-04-19T23:35:00.002-04:00

I've been putting on a brave face for everyone because I feel like I should. My family hurts a lot for me and I don't feel it's fair to keep bringing it up. I've had meltdowns to the point where I sound like a 2 year old and hyperventilating. I am disgusted with myself. I hate the fact the reduce myself to that; I'm an adult. I shouldn't be like this. But I can't stop myself sometimes.

I'm excited to go back to school. I think it's very exciting that I have this opportunity. I just don't know how I'm gonna do. I want to get the A's I know I capable of. I want to prove that I'm worthy of being a teacher, but right now I'm incredibly nervous. I've been out of school technically for 2 years cause I've screwed things up for myself. Now, I'm serious about finishing and I'm hoping that I have the strength to finish and turn this into a positive.

I have so much going on in my life right now, that Caleb should always be in my heart but not the only thing on my mind. It's not like I'm trying to push him out by any means, but I need be able to focus. I hope he is able to accept this and allow me to "move on." Even as I'm typing this, I hate myself for the words that are pouring out of me. I'm sobbing because of the guilt I feel for being so selfish.

I wonder on a daily basis if I'll ever be truly happy like I was whenever I was pregnant with him. I wonder if I'll ever glow or smile like I did before. I smile now, but it feels fake. I laugh, but it's not like I used to. I wonder if in my future someone will be able to understand what I'm going through and be my support when I go through this again. I wish I had an answer for all my questions for the future.

My son should be 4 months old, not 4 months gone. Even though I appear strong, every day I die a little inside when I wake up. Knowing that I'm not hearing him cry to tell me he's hungry, or to change a diaper. Today I was watching the Huggies commercial where the baby boy tinkles all over the bedroom. I unexpectedly cried because I realized I never had the chance to get tinkled on. It's such a stupid reason to be upset, but I couldn't help myself. I can't believe how the little things I'm missing hurt me so much.

Before I go, I wanted to inform everyone that my Grandfather's dog was found by a very nice couple. Daisy was returned safely home. We don't know what happened to her exactly, but at least we have her alive and healthy!!!

Lindsey

Caleb's Great-Grandfather needs your prayers...

2009-04-12T22:17:00.004-04:00

Hey everyone,

I would first like to start off with a HAPPY EASTER and 4 month birthday to Caleb!!! It was a sad Easter and not for reasons you all would think.

Listen, I know this has nothing to do with Caleb directly but it has a lot to do with my sanity. My grandfather woke up at 3AM and realized his dog Daisy Sue was missing. Some sick person who knew him and his habits cased the neighborhood and waited for his opportunity to take her. S/he reached over the fence and scooped her right out of the yard. He then put her in his car and disappeared. This is definitely a devastating loss to an older man who has really nothing else to live for. Please pass this along to anyone who can possibly help us. Grandpap won't eat or sleep until his baby is returned.

The neighbor who witnessed this saw a Red pickup truck (no make or model identified; no license plate number due to the position of the truck) with a side steppers on it. This is the only thing we have. If anyone has seen anything a truck fitting this description and a basset hound that looks like the one in the picture above, please contact the North Versailles police! I don't want my Pap dying of a broken heart.

On the other hand, Easter was today and I missed Caleb all day. But he did get an egg and a basket with a bunny in it. I just hope that I have a Caleb-vention and he will protect his great-grandpappy during this. This whole day has been devastating.

Caleb's Legacy Page

2009-04-03T17:48:00.000-04:00

After months of being lazy about this, I've finally made Caleb's legacy page on the Trisomy 18 Foundation's website! Here's the link:

http://www.trisomy18.org/site/TR/Events/General?pxfid=5530&fr_id=1070&pg=fund

You can read the story and see a picture!

Lindsey

P.S. I haven't been writing because I've been busy. Please be patient with me!

NILMDTS article in the Trib!!!

2009-03-24T10:50:00.000-04:00

HEY!!! I didn't blog about this for whatever reason (had a lot on my mind). I did an interview for an article in my local newspaper about Now I Lay Me Down To Sleep. It turned out amazing and I'm very proud to be a part of it! It ran in Sunday's Tribune Review, and one of my readers left me a link to the website. So if you missed it, you still have a chance to read it!!!

http://www.pittsburghlive.com/x/pittsburghtrib/news/cityregion/s_617214.html

Love all of you for your continued support!!!

Lindsey

Fundraiser and such...

2009-03-18T23:39:00.000-04:00

So many updates!!! First, we'll start with the fundraiser.

While it was cold and miserable...APhiO held the turkey bowling fundraiser. It was amazing! In six hours on a college campus, we managed to raise $150!!! It may not seem like much money, but it is definitely a major milestone. As far as I know, Caleb has raised over $500 for Trisomy 18 Research.

I'm truly amazed by you Sweet Baby. I may never get the chance to see you off to your first day of Kindergarten, or watch you drive off to your senior prom. Instead, I have the great pleasure of being a simple ambassador and your voice in fighting against this horrible disorder that robbed us of each other. I get to be proud of the fact that there may be one day where this can be prevented or treated because of the awareness that you and I put out there. I promised you from the beginning that your death would not be in vain. I've done my best to make it so. I do not take pride in myself for everything I've done, I give that to you. Caleb Alex, you should be in Heaven celebrating what you've done. My sweet son, words cannot express how truly amazing you are without being on Earth. Know that while I miss you, there is no prouder mother than I. I celebrate you every single day!!!

Now on to other things. I'm doing much better. While I still get emotional over mothers with their babies (I curse myself for choosing to work in a mall...), I think I'm making major steps toward acceptance. I hurt constantly, I know I'll never stop. However, I feel that I'm more able to control my anger and sadness. My therapy sessions are going well, and I've actually stopped attending bi-weekly sessions and now am going every three weeks. I feel good about this. Maybe I'll be able to breathe without feeling that sense of loss with every exhale.

Also, I went to see my IUP advisor today. A huge step, you have no idea... I've accepted my own mistakes from the past and am finally moving on to my future as an educator. I have to repeat a ton of classes, but it's time for me to get serious and act like I want a career. I love my job at the Men's Wearhouse, but I don't want to spend the rest of my life trying to climb the ladder of high-end men's fashion. Dr. K has truly been amazing to me; I really don't deserve a 3rd and 4th chance to prove myself. I'm grateful to return to school. I only have myself to rely on now, and I think I'm finally at a place where I can be a good student. I'm going to make Caleb proud of me.

I haven't been blogging much. Mostly because I'm busy, tired, or don't feel like I can do it without feeling sad. I'm going to be keeping up with this cause I feel like it needs to be done. I still appreciate the loyal readers of this mess of my life. You are all awesome!

Lindsey

Update about the Fundraiser

2009-03-09T21:40:00.000-04:00

Ok, here's an update:

Alpha Phi Omega will be hosting a Turkey Bowling fundraiser for Caleb Alex on Wednesday, March 11.

For more info, head to the website http://www.trisomy18.org/goto/TurkeyBowling

I will be there and I talked to a writer for the Tribune Review there. There will hopefully will be a photographer to take pictures of the event!!!

Bring your friends, family, anyone you can to raise some money for a great cause!!!

Lindsey

Trisomy 18 Fundraiser at IUP!!!

2009-02-27T00:44:00.001-05:00

Hey everyone!!! I got some news!!!

My fraternity, Alpha Phi Omega is hosting a Trisomy 18 fundraiser at IUP. I would like as many people that can be there to come. It is on March 11, 2009 (don't have a time yet, but I will post it as soon as I know). All of the proceeds collected will be sent to the Trisomy 18 Foundation in Caleb Alex's name!

Local Moms!!! Please let me know if you are interested in going to this fundraiser. Shoot me an email to lmofcansky@gmail.com. I will give you directions to the place. I'm trying to make this as big as possible! Let's get some money to T18!!!

Lindsey

Caleb's 2 month birthday

2009-02-15T00:24:00.001-05:00

Happy 2 months Sweet Baby!!! I said it to you hundreds of times on the 12th, and I think it's ok to say it again. I miss you every day and think about you every second. I want you to know that Mommy loves you with breath after breath and she talks about you all the time.

Mommy still cries Caleb. I really try not to get upset and I try to stay strong for you. It's just never going to be easy to be without you. I wake up and do what I would have done if you had stayed with me, but it's amazingly hard to come home to an empty crib and know I won't see you smile with excitement to see me when I come home from work. I try to avoid it, but I can't help but imagine what you would have become. I try to avoid dreaming about you; it's just impossible. You were so real to me before you even had those tiny fingernails you were born with. It's hard to sit around and realize that all I have left of you are pictures. I don't get to hold you or cuddle with you. I don't get to hear you cry or giggle with delight. I don't get a chance to see you play with Boo or anger Simba. I never get to see you in water wings, a snow suit or Halloween costume. These were things we deserved to have together, and I'm sad we will never get those special moments.

Mommy loves you. Please never forget that sweetie...Happy Birthday!

My heart aches a lot today...

2009-01-26T22:47:00.000-05:00

The other day, my NILMDTS photos came in. Well, some of them. Shari sent us an amazing slideshow with music that brought me to tears. The rest should be coming in sometime this or next week and they will be posted here.

I've watched this slideshow several times, hoping to gain some kind of closure and that some of my stress would go away. This isn't the case. I'm kinda disappointed about that because work is becoming harder for me. I go, smile and get through my day, but I find it hard to be around babies. Some days are harder than others. On Saturday, I had one of my bad days. There was a baby in the store and it made me just want to hold Caleb so badly. I wanted to kiss his face and feel him against my skin. I actually had to leave the store. I wonder when this will stop. I just want to feel normal again.

I regret thinking and feeling ill toward women who have babies, and worse, I've been feeling angry toward the couples coming in to get married because they will be able to have babies sooner than I will. I don't know if this is just irrational, or if this is something to be expected. I hate feeling like this. I don't want to hurt anymore. I want to feel whole again, like I did when I was pregnant and expecting a healthy baby. I just feel like screaming, "WHAT THE HELL IS WRONG WITH ME?!?" Please God, give me that strength to get through my next week. I will have therapy on Monday. I just need to make it through this week.

I hate being angry...

2009-01-14T22:23:00.000-05:00

Recently, I've been ok with babies, children, pregnant women. But for some reason, I can't stop feeling angry. I'm so mad that there are people that are feeling the way I did when I first found out I was pregnant.

I've been trying to ignore things and fight the pain I feel almost every day. I smile when I want to punch something or bawl my eyes out. I hate the feelings I have. I just want my baby back. I really thought I could handle this, but it feels like there are people rubbing it in my face. I know this isn't the case, I just have it all in my head. It's just impossible to be happy for someone who's starting their happiest journey while I'm smack in the middle of my worst nightmare.

I was supposed to go to a support group last night, but due to work obligations, I was unable to make it. I was disappointed that I couldn't make it because I don't have counseling again until February. The group doesn't meet again until next month as well. I have to rely on my friends and other mothers to get me through the month. It's going to be the hardest so far. Everyone is so supportive, but the counseling and support groups are going to be what I need to accept this. I'm trying to be strong.

It's snowing like crazy here, and I just keep thinking about how badly I wanted to play with Caleb in the snow. Or let him just once, feel it in his tiny hands. I've been having one of my worse days, and I don't like it at all. Usually when I have a bad day, I head to the cemetery. I couldn't go there today because the roads were so bad. I lashed out on my mother earlier today, and then went to bed. I don't like the fact that is my only way of defeating my sad days. I don't like the fact that I go to sleep to stop the bad feelings. I'm driving myself absolutely crazy...

Someone please tell me I'm not the only one going through this right now!!!

One month old...

2009-01-12T10:30:00.000-05:00

So today would have been Caleb's one month birthday. It took a lot to get out of bed this morning only because I didn't want to face the day.

My balloons that sit in Caleb's crib are still inflated. They still sit in there scraping off the walls at specific times and they always comfort me in the fact that my son is protecting me.

I never knew how much losing someone you were so close to would actually hurt until Caleb passed away. I've lost friends and some family members and it hurts when you realize that you will never see them again. It's a crushing blow to the mind and spirit. Losing a baby feels like you're standing on a freeway when a Mack truck hits you. Knowing the diagnosis ahead of time is like you're standing there, watching it as it heads toward you and you can't move your feet like it's a bad dream. Now I just feel like nothing at times. I've found myself staring at walls or crying while watching something that doesn't involve babies at all. I know this is all natural, and the only thing I can say is that I'm thankful that it hasn't happened at work yet. I don't know if I would be able to handle that stuff. I like being the happy person there.

I still visit the cemetery often. It's so cold and painful to be outside, but I do it as much as I can. I know it's only been a month, but I sometimes feel like I'm obsessively checking on my baby. Making sure that there are no sticks on his grave or to see if the ground has finally sealed over him. Luckily, I know this doesn't make me crazy. I find comfort in checking up on him, since I can't do it every day like I wanted and what was supposed to happen.

Here's a little rant moment. Caleb's father hasn't been in the picture since before the diagnosis. He left when I was 4 and 1/2 months pregnant. Admittedly, I had a hard time mourning the loss of my baby's father. Even though it wasn't a good relationship by any stretch of the imagination, I wanted Caleb to have a daddy. I pushed him to get a better job, help us get a bigger place to live, whatever I could do to make sure Caleb would have everything he ever needed or could want. "Daddy" decided it was too much for him. I moved home with my parents because I couldn't do this baby thing on my own and I knew they would always take care of me. They are great parents to model myself after.

Recently, Caleb's dad has been running into some of my friends from IUP and telling them he's sorry for what he did. He even went as far as telling my best friend that he wanted to "reconcile our relationship so we can raise our daughter together." Let me explain. I originally wanted a girl until I found out the heartbeat was 130 bpm and I just knew I was having a boy. So there are three things in that sentence that are a lie. I will let you figure them out.

The thing that hurts the most about this situation is that he doesn't even know his own son didn't make it because he waited. He never tried to get to me, never tried to get my number. He knows where I live here and he never tried to find me. I truly don't believe that his father deserves to know anything about my amazing little guy. My friends and family back me up on this, but I can't say that I'm not hurt about him waiting until now to tell everyone he wants to fix things. It would never happen for you either. Where were you when he kicked for the first time? Or the time my water got shut off? Or when my mother and I got the diagnosis that literally shook the world I was standing on?

Rant over.

Caleb,
Mommy can't believe it's been a month since you had to go be with Jesus. While I'm grasping some kind of understanding as to why this happened, I will never stop hurting for you. I'm sorry, but there will never be a day when I can be ok with what happened to you. You were my everything from the time you were conceived, and I had the best time being your Mommy. I would not change a single thing about the time we had together. You made me so happy, made me feel like I could do anything. Without even trying, you gave me the strength to do things for myself. I knew we would have been the best duo ever!
I know you did everything you could to try and meet me. I will never think you didn't try hard enough because you pushed for two full weeks past your due date to try and meet me. There is no parent in this world who could possibly be prouder of a baby. I swell every time someone mentions your name. I brag about you every chance I get. I can say I knew pride, but the amount I feel when someone talks about you is indescribable. I feel like I'm about to pop and I smile from ear-to-ear. You can be sure that I would have done this regardless of what happened, but for some reason I swell more because of what has happened. You are one baby to be celebrated, not mourned. The only thing that is separating us now is time, my sweet baby. Time that seems like it'll be forever, but I'm sure we'll see each other again before we know it.

I love you,
Mommy

Footprints...

2009-01-09T12:30:00.000-05:00

Before I talk about my amazing new body work, I must talk about the fact that I started counseling on Tuesday. Even though it was a lot of paper work and background information (mostly because I've never done this before), it helped out a lot. She suggested that I seek out a pastor to talk about my issues with God (yes, I'm still having those issues too). I chose not to try anti-depressants or anxiety medication yet. I want to just talk out my problems, and my therapist agreed that I was on the right track to recovery. I think I'm gonna like her a lot, and I feel safe talking to her just like I should.

Now to the tattoo...There's a picture posted, but I'm gonna talk about my experience. Usually, tattoos hurt like crazy and while I love getting them, I don't like the needle thing. All of my tats are on my back so I don't have to see the needle. It's not a big deal if I can't see it happen. My sister and I got the same thing. I got his footprints life-sized while Kourie got them scaled down on her wrist. Mine has more detailed because of the size. Kourie's are more basic. I was really proud because I didn't flinch, but as my sis said, "You've given birth. This should be cake for you." Truly it was. This was the next most exciting thing ever (only second to having Caleb)!!!

Time to start the healing...

2009-01-06T09:47:00.000-05:00

So after my horrible day on Sunday, my sister finally told me that I had to do something before I drove myself crazy. I decided I wanted to go back to work instead of waiting the 6 weeks because I'm losing my mind just sitting around. Well, I need a clearance from my doctor's office before I can just jump back into the world of high-end mens' fashions. I have that appointment this morning.

I did sort of have a breakdown when it came to school and everything. I have a number of reasons to not return to IUP, but I know I will because I don't want to screw up more than I already did. Anyway, if I can buckle under that much stress, I need counseling. Kourie said it, Mom has told me to call the counselor several times. I just needed something like Sunday to realize that while I have my strengths, I need that extra push to get myself through the loss of Caleb. This person has never met me, doesn't know my history...I'm hoping she's going to take this whole story and help me make sense of it. Before I actually go insane. I believe that this can happen, but I refuse to believe that I have any sort of postpartum depression. I can't believe that I'm already going crazy.

I'm honestly done smiling and pretending I'm ok for everyone's sake (including my own). I'm going to allow myself to be a "wuss".

As some of you may know...

2009-01-05T11:11:00.000-05:00

Yeah, yesterday wasn't my best day either. I spent the entire day crying. I'm under a lot of stress to return to school in the fall. I would like to stay here in my hometown and continue, while I know the most intelligent thing is to return to IUP to finish my Deaf Education degree. I like my job and I would like to be able to do both. I'm just confused right now.

But among all the confusion is the amount of pain I'm in. If Caleb would have been here, I would be so eager to go back to school to give him a reason to be proud. With him gone, I for some reason believe that I don't want to return until I'm good and ready. I know that's not smart either, because I will never return if I don't do it now. Caleb was going to be my reason to finish school, but now I have to become sort of selfish and concentrate on getting a degree. I'm not ready to return to that frame of mind yet. I had my head set on being a Mommy until I could afford to go back to school. Now I kinda have to do it by myself, with only myself to do it for. I don't know if any of this makes sense. I'm just ranting.

I'm going to be calling a counselor today because I waited long enough to get the help I so desperately need. I thought I was strong enough to get through all this without any outside help, but I can't do it anymore. Maybe this counselor can help me make the right decision.

Not my best today...

2008-12-30T16:13:00.000-05:00

I've been fine for the most part. I haven't been crying as much, I'm able to go out with friends. I've been feeling the best I could be considering the circumstances. I can't really explain why I woke up this morning and just didn't want to get out of bed.

I decided the other day that I need to go back to work. I miss my co-workers. I've been at the mall almost everyday, and I figured I should be getting paid for it. My boss told me that I needed to go to my doctor to get a work excuse. I figured I could call them and they would just give me the papers I needed. Nope.

I called today and told the woman on the phone who I was and what had happened to Caleb. I told her I wanted to return to work as soon as possible. She said, "You want to return after 3 weeks? Don't you want to spend time with the baby?" I almost lost it. Of course I want to spend time with my baby. It would have been nice if you listened to the beginning of the conversation when I told you that my son died.

Ever since that conversation, I've been kinda miserable. I've been fighting back the tears, fighting the urge to punch a wall. I thought I was going to be ok, but it's just one thing that set me back at the beginning of this. I need my counseling, I was just waiting until after the holidays to do it. I will be fine while I wait. I just need to take it one day at a time.

Merry Christmas!!!

2008-12-24T12:27:00.000-05:00

Many wishes of Merry Christmas and Happy Holidays to all that have been keeping up with my blog.

Since Caleb's journey to Heaven, things have been hard imagining my first Christmas without him. Like I've said before, I was so excited for this holiday when I found out when he was due. My holiday wish is that everyone take a second to hug their child or closest family member, just to make sure they know you love them.

I never knew how much my precious little dude (hehe) would change the life of people. My co-workers are forever influenced by him, and they never even met him. My family is beyond changed by Caleb's presence. But it's amazing how many people I graduated from high school with have educated themselves, or privately read my blog. I even have someone from Australia email me through Facebook to tell me she'd been following my blog. My son, this tiny baby who never set foot on the Earth to make his imprint, somehow stole the attention and possibly the heart of someone across an ocean. I miss him terribly with every fiber of my being, but I become more and more amazed with him every day.

Caleb, as Mr. David said, you went to play Baby Jesus in the Angels' Nativity scene. Do your job well. I can only imagine you as the most beautiful Baby Jesus. I look at this Christmas as a blessing because I had the opportunity to not only carry you, but I got to hold you and be your Mommy for a day. The happiest day of my life.

Merry Christmas, my tiniest angel.

Mommy

Donations

2008-12-20T14:14:00.001-05:00

Tons of sympathy cards have been pouring in at the Ofcansky house since we lost Caleb. All of them are truly appreciated.

As the obituary stated, I asked for a in lieu of flowers request. I asked for money to be donated to the Trisomy 18 foundation. So many people have sent small donations, but every dollar counts. I'm trying to figure out how to get a widget for my blog, but an update is all I have thus far. Since his passing, I have raised $105 for the Caleb Alex Trisomy 18 Memorial Fund. Also, my mom's co-workers have been raising money for the fund, so it could be so much more. I would like to do a fundraiser as well, but that will take time. (Pssssst, if I have any volunteers...please let me know)

I would just like to thank all of you from the bottom of my heart. I've never been more excited in all my life to be doing something as incredible as raising money and awareness in honor of my priceless child.

Lindsey

It's been almost a week...

2008-12-18T15:38:00.000-05:00

So as the title mentions, it's been almost a full week since Caleb went to be with Jesus. My heart aches everyday for my baby. He was so wanted, not only by me, but the people around me.

Like my friend Courtney said that the memorial, "I loved him so much." I knew she meant it, everyone meant what they said. So many people loved this little guy since before his diagnosis, and continue to give a huge piece of their hearts to him after his passing.

Christmas is a week away. The closer it comes, the harder it is becoming. We have ornaments on the tree for him, but it's not the same as having him there. I had so many visions of sitting him by the tree, riding the train at the mall, sitting on Santa's lap. All of that will never happen. That's the part that will always take my heart and stomp it.

Luckily for me, there is a mother on the Trisomy 18 support site who's going through this journey at almost the same time. I guess I shouldn't say I'm lucky because no one should ever have this pain, but Lacey has been amazing to me. She lost her love on my due date. She emailed me through the support site, and we've been keeping in touch ever since. She gives me suggestions and I try to do the same for her. If she's reading this, she already knows how much I appreciate having her in my life. I don't know what I would do without her right now. I can't imagine doing this without having a release like her. My family has been so supportive, but there's honestly nothing like having another Mom going through this with me. I can't explain it.

I know Caleb is buried now. I haven't been able to go up there and actually see his name on a marker yet. I hope he understands. My mom suggested going tomorrow at 1:51PM, it will be exactly one week since. He's buried near my younger brother Alex, who passed away 22 years ago. Yes, pain can touch a family more than once.

I worry about my mother. She not only lost a baby herself, but she had to watch her baby lose a baby. I can't imagine how much she hurts; I know she does. She didn't just watch me lose a baby, she had to say goodbye to her grandbaby. My heart hurts for Caleb, but I know he's safe and happy now. Now, I worry about the people he left behind.

My sister baked cookies yesterday, no doubt an attempt to think about anything else. Mom helped her, again, probably for the same reason. Baking is usually my way of thinking of something else for 1 minute. I just can't bring myself to do it because it reminds me of something that Caleb will never be able to do with Mommy.

When my cousin Lori was here with her little guy Matteo, Mom and Kourie had him make a gingerbread house. I wanted to be apart of it so badly, but I just couldn't bring myself to sit there with him. I knew I would cry and hurt in front of him. I had been trying to avoid that the entire weekend.

Speaking of Matteo, that little guy is so intuitive. While I tried to cry out of his sight, he knew something was going on. Lori had him in the tub, explaining the importance of being quiet in the funeral home the day before the memorial. She was explaining how Caleb went to be in the arms of Jesus. He looked at her and asked, "Is that why her back hurts and she's sad?" It's amazing how a 3-year-old can know so much, or at least pick up on these things.

Another amazing thing about Matteo. We went to the cemetery on the day of the memorial to release the balloons for him. We were looking for his gravesite so that we could release them from over him. We couldn't find it, but Matteo (who can't read yet) was looking at all the headstones saying, "Don't worry, I'm gonna find Caleb for you." He worked so hard to find him. He will never understand how much that meant to me. He's an amazing little guy.

This whole situation has been so heartbreaking and hard on me. Everyone thinks I've been so strong, but I really don't feel like I've been someone to look up to. There are thousands of Moms that have gone through this before me, and there are too many Moms that are going to go through this after me. I wish this whole Trisomy 18 thing could end with me. I know it won't and I know it can't.

My hopes for this blog were to educate people about Trisomy 18 and use this as my therapy. I hoped that there maybe another Mom that just got a diagnosis like this, and that this could help her during this. During this time in my life, I've found that the internet has helped so much. There has been Trisomy Moms on Myspace and Facebook that have reached out to me, there is of course Lacey on my Trisomy support site. I find you all amazing. None of you needed to contact me, but you felt the need to reach out to me, and for that I'm grateful. I love you all, and I've never met you. I hope all that I've done through emailing has been helpful for you as well.

Well, this has been my emotions of the week. Thank you for listening.

Lindsey and Caleb

Caleb's Eulogy

2008-12-17T12:11:00.001-05:00

This journey began with a mixture of fear and elation. Even before Caleb Alex was a thought, I knew I wanted him. Once I knew of him, I started dreaming of him. Would this amazing little guy be a doctor, an astronaut, a zoologist? Would he cure a disease, fight fires and save lives or discover a new species of animal? I had no idea, but it was a thrill to be thinking about it every day, every single second.

I dreamt of summers by the pool, telling Caleb not to run with his water wings flying by sides. I dreamt of raking the leaves in fall and watching him run through them, complaining about how itchy he was afterward. I dreamt of snowmen and sled-riding with Grandpap, cookies and reindeer food with Grandma, Aunt Kourie and Aunt Amy teaching him ways to be ornery and irritating. I loved the idea of him having the best cousins in the world that would pick on him constantly, but defend him when other kids made fun of him. I felt something inside me that I took for granted. Hope. Every kick would trigger something new in me; something I’d never expected. I was going to be a Mommy. Even with the fear pulsing inside of me, I was elated to have a future with this little guy. My little man, my pumpkin-head.

Staci Lynn and I sat around her house, playing with her little Alexis. She always said that either way, this baby was going to grow up being her best friend like she and I are, or Alexis’ first little boyfriend that would kiss her and then run away. We were thrilled that I was having the latter. It triggered so many other things inside of me, but most the dream of pictures. The one image I had was of the two of them sitting together on the sofa, Caleb’s arm around Alexis giving her a big smooch on the cheek, her face annoyed. I thought of Caleb irritating her to the point of her hitting him or pushing him away.

For myself, I dreamt of rocking him, singing him to sleep. I thought of holidays and birthdays and friendships for him. I thought about his grandparents spoiling the heck out of him. I thought of Kourie giving him gum or cookies after I had specifically told her not to. I wondered what his first word would be; even if it was a naughty word, I would be so excited for him. I couldn’t wait for the first time I would hear him call me Mommy. I couldn’t wait for his first step, first day of Kindergarten, first date, straight A’s, prom, graduation, college. My head was spinning with the bright future my little man had. The memories, even though they hadn’t happened yet, were already there.

When this diagnosis came up, my initial thought was that it had to be a mistake. There was no possible way that this was happening to me, happening to my family or him. No possible way that my precious baby could be suffering from something so terrible. My son was stronger than this, I had done everything right and by the book. How could this be happening to him after all he and I had been through thus far? Why did it have to be him? I felt like a hole had been ripped into my chest and the life had been sucked out of me. My hopes, my dreams, everything gone with the simple words Trisomy 18.

After the shock of this diagnosis, I started to fight the fear of losing my baby. I fought with every ounce of the energy I had left to push stress away. I knew that I didn’t want him to feel what I was going through. I wanted him to know that even though this was happening, I was still honored and amazingly thrilled to be the mother of such a brave baby. In the end, he was making a sacrifice that really wasn’t his to make and I wanted him to know that I was so proud of him. I wanted him to continue to grow and gain the strength because this wasn’t a death sentence; it was just a bump in the road for him. I continued to do everything right. I was going to do everything in my power to bring him into this world as safely as I could.

In the days before he entered the world, I became anxious. I wasn’t nervous for myself or even the birth process, but I was anxious for him. Worried that he wouldn’t have the strength, or I had pushed him too much. He had already proved that he was amazing by living inside of me for forty-two weeks. All he had to do now was come out and meet me. I had been waiting for 10 ½ months to hold that miracle in my arms and all I’d asked for were a few short minutes with him.

When it came time to actually give birth, I began to cry. The realization of him was coming to me and I knew that the outcome could very well be sad. When it came time to push, I didn’t think I could do it. I didn’t think I had the strength that Caleb did, but something in me, something I didn’t know existed pushed me to make sure he came safely. I dug down so deeply, hoping that the faster I got him out, the better chance I had of seeing him alive. Nothing could have possibly stopped me. And nothing could possibly hurt more than hearing the words, “Lindsey, we checked him and he didn’t have a heartbeat. I’m sorry.”

When I saw him for the first time, my heart stopped. I’d never seen anything so beautiful, so precious as his perfect little face. I’d never felt such a combination of joy and agony at the same time. I studied everything about him, committing it to memory. I stared at his feet and his legs, his fingers and his arms. I followed the contour of his chest, to the curve in his neck, the dimple of his tiny chin. His cheeks had the perfect roundness to them, his nose the tiniest thing I’d ever seen. I even got to see the bright sapphire color of his eyes, which I’d never dreamed could be possible. His hair was dark and thin, and it was the softest texture you could possibly imagine. He was absolutely perfect on the outside, regardless of what was inside of him that stole him from me.

This child, no matter how short his time here was, made an impact on the world. He imprinted himself on my heart and my soul, just as he’d done with the rest of you. He may have and a tiny hole in his heart, but that is nothing compared to the hole he left in mine. I never knew I could lose the love of my life before I’d even met him. While I feel he’s lucky to be safe and warm in the arms of Jesus, I feel that I’m even luckier. This tiny human taught me what it really was like to love. He taught me what heartbreak really felt like. He also showed me that I have a strength in me that I never knew existed before. He made me into an adult, even though that wasn’t his job. He will be on my mind and in my heart everyday. I will never forget the amazing strength that he carried, and the bravery it took to leave so early.

Caleb, you will never know the pain of skinned knee, or a broken heart. You will never know sin or worry that you’ve upset me. You will never struggle over a math problem or be upset that you couldn’t find a date to the dance. You will only ever know happiness and comfort. For that, I’m grateful. My sweet baby, you can finally be at peace. Run around, jump, dance. Do whatever you want to in Heaven because you now have the chance to do so. Know that I will miss you with every breath that I take, every beat of my heart. One day I will join you in Heaven and we will do everything that I’d planned to do with you here on Earth. . I can’t wait for the day I hear you call me Mommy when I meet you there. You are everything I could have hoped for in a child, I love you and I could not be prouder to call myself your mother.

Caleb's Obituary

2008-12-15T22:49:00.000-05:00

After a brave battle with Trisomy 18, Caleb Alex Ofcansky, infant son of Lindsey M. Ofcansky, of Greensburg, was born to Heaven Friday, December 12, 2008 at Magee Women's Hospital, Pittsburgh. He was predeceased by his great-grandmother, Mollie Ofcansky-Freed and an uncle, Alex M. Ofcansky. In addition to his mother, Caleb is survived by his grandparents William E. and Debi Ofcansky, of Greensburg and aunt and godmother, Kourie Ofcansky, of Greensburg and aunt, Amy Schade, her husband Laddie and their children Kiennen, Nicholas and Kierstin of Irwin. He is also survived by great-grandfathers William Ofcansky, of North Versailles and Richard Freed, of Squirrel Hill, great-uncles Harrold Ofcansky and his wife Rene, of White Oak, David Ofcansky and his wife Kim, of Pitcarin, and John Ofcansky, great-aunts Faye Kirkling and her husband Michael of Greensburg, and Sandra Richardson, of Newnan, GA, godmother Staci Gressley, her husband Justin and daughter Alexis, of Indiana and cousins Lori, her husband Vito and son Matteo, Savannah, GA, Jessica and Neveah Immel, Ashley Smith, Sarah Richardson, Amanda Dukes, Nathan, Holly and John Ofcansky. A private memorial service will be held at 10 a.m. Tuesday at the BARNHART FUNERAL HOME, 505 E. Pittsburgh St., Greensburg. Private interment will be in St. Clair Cemetery. In lieu of flowers, donations should be made to the Trisomy 18 Foundation in Caleb's memory at www.Trisomy18.org.

Caleb's Memorial

2008-12-15T22:23:00.000-05:00

Tomorrow is Caleb's memorial for my family. I spent today writing his eulogy and crying my eyes out. I'm so tired of hurting. I always said I would be sad later, but I didn't know that I would have to be sad as soon as he was born.

I did get to spend the entire day with him and I was so happy that I even got that. It's just that tomorrow hasn't even happened yet and it's a worse day than the day I lost him.

All I ask is that tomorrow my family be in your thoughts and prayers that we will have the strength to get through it. Especially for me, and it's only because I have to read the eulogy. I will have that posted as well as pictures from the balloon release scheduled for 1:51PM, the time he was born to Heaven.

Obituary

2008-12-15T01:02:00.000-05:00

Hey everyone,

Caleb's obituary was posted on the Tribune-Review's website. I would really like people to sign it so I can print it out for his scrapbook. Here's the link:

http://www.pittsburghlive.com/x/tribunereview/obituaries/?mode=view&obit_id=163984

Thank you all for your continued thoughts and prayers for my family at this time. You will never understand how much your love and support truly means to me and my family.

Lindsey

Pictures of the Big Day!!!

2008-12-13T15:32:00.000-05:00

Hey everyone,

As promised, here are pictures of the most amazing and beautiful thing that has ever happen to me. Warning: He's too adorable for words.

Rest in Peace My Love...

2008-12-13T02:54:00.001-05:00

Caleb Alex Ofcansky was born on December 12, 2008 at 1:51 PM with Grandma and Aunt Kourie by my side. Courtney and Staci Lynn were waiting outside patiently to meet him. Sadly, it my (Mommy's) duty to report that he did not make it through birth.

The nursing staff and doctors who delivered me were absolutely amazing and patient with my brand of humor. The birthing process went smoothly for me, mostly because I had the epidural. I got to watch my son come into the world through a mirror attached to the ceiling. I watched him come out, with the cord around his neck and I knew that we weren't going to have the luck that we'd prayed for. We were able to keep him all day, kissing and hugging what once was my precious son. We met with the NILMDTS photographers, who took stunning photographs for my memory of him. Courtney, Aunt Amy, and Stacy T (who stopped by later to visit) stayed with me for most of the night. We finally decided to baptize Caleb right when my father showed up to meet his grandson. He was baptized at 8:10PM, and my family said out final goodbyes at 12:05AM. I was discharged from Magee at 1:30AM to mourn with my family.

Words cannot express the amount of sadness I feel right now. I never knew someone could feel so much joy and pain at the same time. I also never knew that the love of my life would leave before I ever even got to meet him. My heart has never hurt so much, and I'm not even sure that it will ever heal from a break like this. I prayed and prayed and prayed for him on a daily basis to make it, and no amount of prayer could bring him home with me through the holidays.

Now, I take the time to thank all of you who religiously read my blog throughout this process and those who checked it like it was your job these past few days. There were so many of you praying for him, that I truly believed that a miracle could occur. Even though it didn't happen for me, I appreciate every single one of you who took the time to make comments and reassure me throughout this trying time. No amount of thank you would ever be enough for all of you. You were truly a big part of my strength in getting through this.

There were pictures taken of the day (of course), and I will be posting them as soon as I can. I'm just really tired right now and don't have the patience to do it. I will have them posted tomorrow sometime.

Again, thank you so much.

Lindsey Ofcansky

Update at 9:30 AM

2008-12-12T09:25:00.000-05:00

Lindsey's dilated to 6 the cm. We are waiting to talk to NICU pediatrician about the measures we will take after this little honey makes his debut. After that, they will break her water, then he should be here in 3-4 hours. The way Caleb has been calling the shots, I am looking at 4 hours. More news as soon as we learn it....

He's Coming, He's FINALLY Coming !!!

2008-12-12T05:47:00.000-05:00

It is 5:52 and Lindsey has now been hooked up and is about to get an epidural. She is 3 cm and Caleb is in position. We are in the middle of the changing of the guard, so anyone we met will be leaving at 7:00 AM. So far everyone has been awesome, despite Lindsey and Kouries' (her sister ) sense of humor, which they can't seem to turn off. Lindsey has just told he nurse anesthesiologist that she loves her. She said she understands, she is usually very popular at this time. And now we will wait, and hopefully she will rest. She has been in labor since 11:00 PM Wednesday, and has not slept very much.

Stay tuned for further updates.......
Caleb's Grandma

Going to the hospital

2008-12-12T03:01:00.000-05:00

As of 3am, we are headed to the hospital because the pain had hit it's peak for me. We are going to see if they will admit me early and give me something for the pain.

And because this is my labor and nothing will go smoothly, it snowed like crazy outside last night and we will be making that journey to Magee in this. By the time you are reading this, you will understand.

Updates to follow...

16 hours into labor

2008-12-11T19:35:00.000-05:00

Hey guys,

So it's been a slow day for Caleb and me. I've been having consistent contractions at 10 minutes apart. I'm in an incredible amount of pain, but I'm toughing it out so I don't get sent home from the hospital. It's been a long day, but I'm doing my best to get through it. I took a little nap today, but the contractions kept me up. I gave up sleeping and now am just going through the motions.

Mom just said that since the pain is intensifying, we might be taking a trip to Magee just because of the weather. It's starting to freeze out there and we just want to be close just in case. It's a 45 minute drive for us on a good day. Just taking precautions.

Stay tuned...

We're in Limbo...

2008-12-11T09:02:00.000-05:00

I went to the doctor's office at 8am to get checked just to make sure it would be worth it to travel down to Pittsburgh this early. I'm 2 centimeters dilated and 50% effaced. My contractions are 10 minutes apart on average and they last about 45 seconds. I'm "induce-able," but he said that I should come home and relax until my contractions are 5 minutes apart. Then I should make the trip to Magee. Either that or if my pain becomes completely unbearable, I can go.

If nothing ends up happening with in the next 24 hours, I am to report to the hospital at 8am tomorrow to be induced. So either way, there's a baby coming and we are ecstatic!!! It's about time Caleb Alex!!!

I will try to keep you updated throughout the day, but since I didn't sleep last night...I'm gonna try and do some of that too.

Thanks for your continued support guys! It's been knowing that you're reading that's been helping me get through this.

Labor Time!!!

2008-12-11T06:49:00.000-05:00

I went into labor around 1am on December 11. I had been having contractions all night, but I waited until they became unbearable and now we're heading to the hospital. We're going straight to Magee here soon and we're gonna see what's happening.

Mom has her laptop with her and we will be blogging as much as possible. I guess the induction will not be necessary.

Stay tuned...

FINALLY!!! A decision has been made...

2008-12-10T18:51:00.000-05:00

So around 4:30 today, I was finally called by the Genetics Counselor at Magee. The doctors in the Maternal-Fetal Medicine department have decided that they are going to schedule an induction for me. This could take place as early as tomorrow night. We don't have an official appointment, but we will know when they call back with an official time tomorrow morning.

To be continued...

Two weeks overdue and counting..........

2008-12-10T11:49:00.000-05:00

I am officially 2 weeks overdue today and I'm a little upset. I know that my mother and I decided to do the "compassionate care" method when we went to the hospital, but I had no idea that I would have to argue for an induction so I could have the chance to meet my son. I have to wait until after the Maternal-Fetal Medicine meeting today before I hear about the doctor's decision for me.

I tried to be patient and understanding because doctors have to know more about this than I do. My problem is, I'm in pain and I want him out. I couldn't sleep comfortably. That's really the least of my problems. I wonder if I lost time with Caleb because the doctors have been pushing my induction and the decisions to the last minute. What if I lost two weeks of precious time with my baby? I'm already dealing with the negative sides of this. I'm starting to definitely feel anxiety here, and I've been doing an amazing job controlling my stress for Caleb's sake.

I just want this whole situation to be over with. I've been going through this for 9 weeks now, wondering if my little man is gonna be strong enough to pull through this. Now, I'm throwing myself on the mercy of God here to please allow me some time with him. The call I had yesterday with Magee made it sound like they were just going to make me wait as long as possible before they decide to induce. What happens if he decides he can't hold on anymore and he passes away before I get a chance to ever see him? I don't know if I'm strong enough to continue like I used to. I'm so deathly afraid of never hearing him cry, seeing him breathe or even a tiny smile that I've been looking forward to since I found out I was pregnant.

I can't take this anymore. I want Caleb now, and I can't imagine going through this anymore.

2008-12-08T15:16:00.000-05:00

It's Grandma's Turn To Talk

This is Caleb's Grandma talking now. We found out that the doctor at the hospital where Caleb will be born is not in the office today. We now have to wait until tomorrow to see when they want to schedule to induce. Our hometown doctor's have been wonderful, but the lack of communication with us and the delivery doctors has caused just as much anxiety as the situation we are in.

I worry about my daughter, who is my hero, after all that she has been through, and the next journey we will be going through as a family. She worries more about all of us...her sister will be taking her finals this week. She will be one of Caleb's Godmothers. Her dad is a self employed hairdresser and works alone. What about his schedule? Her best friend, and Caleb's second Godmother, has an 11th month old daughter. And she works. Her older sister, who has three kids of her own, and is also in a business with her husband. And finally, a cousin, who is more like a sister, and lives in Georgia. She and her little boy and husband would like to come up here to meet our little wonder. I am the lucky one. She and I will be going through the delivery together, and as you do with your children, I will drop everything to be with her at this time.

We will need to have Caleb baptized as soon as possible, due to not knowing how much time he will be with us. We have made many arrangements, some I never expected to have to do when a little baby is coming. One of the best connections we have made is with an organization called Now I Lay me Down To Sleep. They specialize in infant photography for "situations" like ours. I am a photographer, and have taken thousands of pictures of my family and others. But I know I will be in no condition to do justice for my daughter at this time. I am looking very forward to meeting the very wonderful young woman who has eased my mind with this very important detail.

We have been offered the use of many things, from furniture to clothing to help us out. We cannot tell you how much we appreciate all of the offers. We are just too afraid to go all out, because we still don't know the outcome. Being the Grandma, I of course couldn't help buying the 1st Christmas ornament. And I bought one for Caleb's Mommy that says "I Love My Mom". And the baby blue and white Santa hat and stocking that we are probably going to be able to fit Caleb in because he will be so small!

Lindsey is resting now, after all she is 41 weeks and 5 days along. I hope she is dreaming peaceful dreams about her and her precious little boy. As she says... We are going to be Happy now, we will be sad later. I told you she was my hero.

And for everyone who is reading this blog. Thank you so much for caring enough to follow our family on this journey. Please keep us in your thoughts and prayers. You will be in ours.

We will update you tomorrow after we hear from the delivery doctors.

No final word yet...

2008-12-08T13:39:00.000-05:00

We still have no final word on the possibility of an induction. And by that I mean there hasn't been an appointment set in stone yet.

I'm still only a centimeter dilated, so it looks like it will be Thursday or Friday that I will be forced into labor and Caleb will be forced to face the real world. YAY! At least I finally have a chance to look forward to something.

Updates to follow if needed...

Tomorrow's appointment

2008-12-07T11:13:00.000-05:00

Caleb's been showing signs of getting antsy in there. He's been kicking and punching a lot. He actually woke me up this morning. However, he's just getting annoyed with the place and not making efforts to come out himself. I think he wants to be forced out. I don't care at this point, I just wanna meet him.

So I have an appointment tomorrow, and this one will finally determine whether or not I need to be induced. I was really hoping he would decide to come on his own, but on Wednesday he'll be 2 weeks overdue. We're running out of time here. He'll just have to be drug out. We shall see...

Updates will follow after tomorrow's appointment!

Caleb's clearly never coming out

2008-12-03T15:03:00.000-05:00

I had a doctor's appointment yesterday. Heartbeat is still very strong, and I'm no closer to labor than I was last week. Now, all I can do is wait for next week (Monday to be exact) for my next appointment. The doctor will check me to see if I'm anywhere closer, and if so, they are going to schedule an induction at Magee. So after all the decisions we've made, Caleb has decided to throw out our best laid plans.

When we were are the doc's yesterday, I was giggling because this figures. It's my child and I shouldn't be surprised that he's decided to make this difficult. He somehow knows this is all his deal and he can do whatever he wants. Good news is, he's still moving around and he showing me he's gonna be a fighter.

I'll be keeping you updated...

The verdict...

2008-12-01T10:22:00.000-05:00

I called every doctor in the world today and no one will force him out. I called my doctor here and they said that Magee wouldn't see me until after my due date. They didn't realize that I'm already 5 days past that. So they instructed me to call the hospital and schedule an appointment with them. The genetics counselor down there said that they won't see me until I'm at least a 1 - 2 weeks overdue. Then they will decide if intervention for him to be born is necessary. I then called my doctor's here to schedule an appointment here.

Needless to say, I'm frustrated. I want to meet this guy and I've waited long enough. I don't know how long I will have him for, so the sooner he comes out, the better. Of course, I could take into account that he doesn't want to come out yet because he's trying to come out healthier than he would be if he came out now. He's taken the wheel here, but I want to stomp on the brakes and get him out. I'm already nervous about giving birth and doing this by myself. Why add more stress to mommy? Oh right, this is my child and it makes sense that he would chill in there until someone forces him out of the comfort of my womb.

Updates will follow tomorrow...

Still nothing...

2008-11-30T22:22:00.000-05:00

So it's officially 5 days since my due date and nothing exciting has happened. I did start getting some cramping that is supposed to be the pre-labor pains. I'm hoping that something happens soon. And it probably will...We're shooting for December 2nd (just so he isn't born on his father's birthday...which is the 1st).

We've been receiving a ton of phone calls from friends and family trying to find out what the situation is with Caleb. He's just being stubborn and hanging out in there because it's warm, safe and rent free. We're all trying to be patient and wait for his arrival, but he's just gonna do what he's gonna do.

Again, we're updating as things are happening...but nothing is.

Happy Thanksgiving

2008-11-27T11:50:00.000-05:00

My family, Caleb and myself would like to wish everyone reading a Happy Thanksgiving! The followers and other readers of this blog will never understand how thankful we are for all of you who faithfully follow our adventure with Caleb. We will always appreciate everyone who takes the time to send messages and let us know you're rooting for him!

Other than all that, there are no other updates. Caleb is still kicking and moving around like crazy, he's just not ready to come out yet. I never got a phone call back from the doctor's office, so I assume that the appointment for Magee hasn't been made yet. I will be calling tomorrow to see what will be happening with that.

I hope everyone has an awesome holiday. I'm crossing my fingers that this little turkey will wait until I'm done eating mine.......

Happy Thanksgiving!!!

Tomorrow!!!

2008-11-25T20:53:00.000-05:00

So tomorrow is my due date and guess what...Caleb is stubborn! I haven't even started dilating yet, and the best part is he just dropped this morning while I was sitting in the waiting room. We should be expecting him soon.

I was gonna schedule an appointment for next week, but the doctor thought it would be a good idea if I went to Magee for my next appointment. When they called down there to schedule it for me, the doctor on the other line said that she would talk to the team that met with me a month ago. She assumed that they would want to induce me by the end of the week. I was told to wait for spontaneous labor, but now it looks like the plan may be changing. I will keep you posted. I haven't even gotten a phone call about when the appointment yet, and I will be calling the office tomorrow to see when it's happening. They said they don't want to wait until next week, so I could be visiting as soon as Friday.

There really isn't a lot going on until I go into labor. If we are able to blog from the hospital cause we're allowed to have a laptop there, we will be keeping everyone updated.

Less than a week!

2008-11-21T19:05:00.000-05:00

Today I had my 39 week appointment. Caleb's heart rate is fine, but that's all I know. The doctor that I saw right before I found out about my baby's diagnosis was my doctor today. And she couldn't have gotten out the office any faster. She came in, did her thing and was out without even introducing herself to her mother. I must have intimidated her or something because I've never seen anyone move as quickly as her. I wouldn't want to be that doctor either, considering the fact that she didn't give me a head's up before heading to Magee.

Other than that, things are awesome. I'm 5 days from my due date and I'm excited. Caleb got his first Christmas ornament (a tiny snow globe that has his name on it). We're going to start preparing for him to come home with us, regardless of what the doctor's at Magee have been telling me. I'm holding onto the hope that my son will be coming home with me, and he will be here for his first Christmas and hopefully more. I want everyone to meet him and get to know him for who he is. I want to be able to enjoy him. I just hope that God will grant me this.

I only have 3 days of work left before I go on leave. I can't believe that it's already that time to take time off of work and say "hi" to my new life with Caleb. I'm really surprised how much time flew by. I have been concentrating on how much I can't wait for the pregnancy to be over and it's not because of recent events. I'm just annoyed with the end of pregnancy. I have normal pains and the usual things. I just want it to be over for my sake.

Well, since nothing is really going on until I go into labor. I will blog if there's something on my mind, but other than that, I will let keep everyone updated as best as I can.

13 days!!!

2008-11-13T23:18:00.000-05:00

Ok, so here's today's update. Caleb's heartbeat is at 150 bpm. I haven't dilated anymore (1 cm last week), and my cervix is still really thick. This amazes me. From what I've read, these babies are premature. Caleb seems to be hanging on, and right now this little guy is my hero. I'm so proud of him for making it this far. He's being more than a fighter, he's here to prove something to me.

I emailed Ginger Hites, the representative from NILMDTS that my mom contacted. I gave her an update about Caleb, and let her know that I'm more than willing to take part in the article that I mentioned in yesterday's blog. That's all I got right now; I will probably be updating about that soon enough.

There are only 13 days until my due date. I'm so excited and nervous at the same time. I have no idea how I'm going to take care of this little guy, but I'm 100% sure it will come to me as soon as I see him.

Please continue to keep us in your thoughts and prayers, only because he's gonna be here soon. Please pray that we're gonna be able to bring him home. We really just want him to come home and be with us for the holidays.

I have a lot of ultrasound pictures of this little guy. I will be trying to scan them sometime this weekend and get them up here for you all. I just realized that there are no pictures on this blog at all.

Thanks to all for becoming followers. It means a lot that everyone is taking the time to read this.

Lindsey

Now I Lay Me Down To Sleep

2008-11-12T19:06:00.000-05:00

I haven't written in a week, but that was because there weren't a lot of updates. As of last doctor's appointment, his heartbeat was at 130 bpm which is normal. He's just taking his time to come out. As of today, I'm two weeks away from my due date and that's exciting.

I have a doctor's appointment tomorrow, which is pretty standard. I'm meeting a new doctor for the first time, so I will have to go through the "I'm sorry" speech again. I appreciate everyone saying this to me, I really do. But now I've accepted this and revisited the excitement of just having a baby. I don't want to hear apologies and sympathies anymore. Let those wait until after everything that happens with Caleb happens. I want to hear nothing but happy sentiments or nothing at all.

My mom has contacted a representative of Now I Lay Me Down To Sleep, an organization that does professional photography for families whose babies have genetic disorders, etc. The photographers do this service free of charge and believe it is an honor to be a part of this. The representative will be available around Caleb's due date, but she will also have the other local photographers on alert so that we will have these pictures of him to treasure forever.

Also, the NILMDTS rep told my mother about a friend of her's that wants to do an article about Trisomy 18 babies. She asked Mom if I would be interested. Mom assumed that I would want to take part in it. Good assumption. The main reason I started this blog was to get the word out about Trisomy 18, even though there are other parents that have come before me. Being a part of this article would be one of the most meaningful things I've ever done. I will be speaking for a child that will be unable to speak for himself. I'm truly excited about doing this, so I hope that it will go through.

There will probably be an update tomorrow. Sorry it took a week since the last one. I promise I will be more diligent about blogging.

24 days until my due date!

2008-11-04T23:50:00.000-05:00

So today is the election, and I have more important things to talk about. Caleb.

It is now 24 days until I'm due and I couldn't be more excited. While this is going to be the hardest thing I will ever do as a human being, he will honestly be my blessing. I can't believe how lucky I've been to carry such a perfect baby inside of me for the past 9 months. I know I've been kinda negative about this whole situation as most can understand. It's not because I feel like this is a bad thing, I know it happened for some reason. I just feel like he's being cheated out of what could be an amazing life.

Before his diagnosis, I often thought of what he would be when he grew up. Now, all I wonder is what he's going to do in his short time on Earth. What he was destined to do for Mommy and everyone else who obviously loves him. And believe me, he is the most loved baby on the planet right now. I wonder what his purpose was, what his greater purpose is that he has to leave us early.

When I watched Oprah the other day, Ginny Mooney said something that really got me thinking on the positive about Caleb. She said, "I can be sad later. I will enjoy the time I have with him." The biggest thing I never even thought of. I spent a lot of times worrying about what my family is and will be going through. I spent a lot of time feeling sorry for myself. Now, I just need to smile and realize that my son will always be my miracle baby.

Mommy loves you Caleb. With all my heart and my being and I can't wait to meet you. Please don't make me wait any longer than I have to. XOXO - Mommy

Babies Everywhere!!!

2008-11-01T23:00:00.000-04:00

I know no one means anything by bringing their babies to the mall and into the Men's Warehouse, but it's becoming harder for me to deal. With my due date fast approaching (28 days), I find it harder and harder to fight back the tears. I worry about Caleb every day and I wonder if I will ever have the chances with him that other mothers have with their babies.

I hope so, but I'm also trying to be realistic. I know that Trisomy 18 isn't viable with life. I know Caleb's chances aren't good. This is heartbreaking and difficult for me to accept. I've been showing a strong face and for the most part, I'm dealing with it. I still find myself taking a deep breath when I see a baby, and it takes every ounce of my energy not to run away when I see one.

Yesterday was Halloween. I worked and the mall had Trick-or-Treating for the kids. There were so many children, but I was able to deal with that because they were happy to see me and adorable in their costumes. Seeing them smile kinda made me forget about my situation for a couple of hours, something I've been needing lately.

Today was an isolated baby and no one was available to take care of the customer. I had no choice. The baby the couple had with them was smiling at me and doing cute things that kinda made it hard for me to forget that Caleb won't be a typical baby. He will have difficulties if he comes home, and I have to prepare for that. After the couple left, I took a deep breath and I was better.

Don't get me wrong. If Caleb comes home with me, I will enjoy every single second I have with him and will cherish every first that he does have. It's just hard to see everyone else with those "perfect" babies without me wondering why I couldn't be her. I know I must sound like a terrible person.

I am lucky and I know this. It will just take time for me to realize and actually see it with my own eyes.

Oprah

2008-10-29T20:38:00.001-04:00

Yesterday, Oprah featured miracle children. One of the children happened to be Eliot Mooney, a baby with Trisomy 18 who lived 99 days. The show featured the video on YouTube called "99 Balloons." I will be posting the link to it on here.

The Mooney's wrote letters to their son for everyday he was alive, took over 3000 pictures and made a video about the life of their son. The miracle of his 3 month life. The video is a beautiful tribute and one day there will be pictures of my darling Caleb on this blog.

Here it is...Please watch it. http://www.youtube.com/watch?v=th6Njr-qkq0

What happens when the "whens" becomes "ifs"?

2008-10-27T21:27:00.000-04:00

Recently, I've been upset with the fact that the "whens" in Caleb's life have now turned to "ifs." I had so much planned for my son and now it's all been ripped from me. For example, it was always "When he comes home..." and now it has become "If he comes home..."

There is nothing left except to say that I'm angry beyond belief. There should never be a question like this in my head or in any mother's head. My son deserves a future. He deserves to have a life and I was going to be the best provider that he would have ever had. I don't understand why I was tapped for this. I'm the impatient kind, and this situation doesn't change my personality. I want the answers as to why this happened NOW. I can't stand the fact that I have to wait to find out the reason behind this. Why this had to happen, why it happened to me after everything he and I have been through.

I try to keep my head up and stay positive for his sake. He still has a full month of growing to do and I won't be the reason he decides to leave early. I want to see him open his eyes and I want to feel him grab my finger. At least once. The problem I'm having is that I still have breakdowns, I wake up at night and freak out because I think that he's gone. The worst of it was when I was laying in bed with my hand on my stomach and I felt his heel kick me in the hand. I just started to cry cause I never felt anything so incredible in all my life. I often wonder if that's the only time I'll feel him kick, if I'll never feel him kick me outside of my body.

I wonder if he'll make it to Christmas, New Years, etc. The worst is that Halloween is coming up and I know there will be babies dressed up and I wonder if he'll be able to do that. I wonder if he'll surprise us all and prove us all wrong. Who knows? Only God, and I'm still trying to get over my anger with him.

Magee Update

2008-10-23T13:57:00.000-04:00

Hey everyone,

Yesterday, my mother and I went to Magee again. This time it was my turn to talk to doctors and discuss what my options were for my son. This was a trying day.

First, we had an ultrasound to look at his current status. I just can't help but look at the screen and think that he is still the most perfect baby I've ever seen. I know it's not possible to change the outcome, but I so wish that the doctors were wrong. I know they aren't. His little hands are definitely clenched and I could see them right on the screen.

Next, we were meeting with the obstetrics team cause they will be the one's delivering Caleb when the time comes. I met with 2 of the possible 20 doctors and they answered a lot of my questions, including the ones I felt were stupid. They gave me options for my delivery, and I had to make decisions. The first one I've made was not to have Caleb's heart monitored during labor. The doctor's told me that I will not be in a good place on the day and they fear that I will stress out too much if Caleb were to ever come into stress. Next, it was decided that I will not be having a C-section because it could pose a significant threat to me and it would not benefit the baby at all. Then, I decided that if he were to be born to alive (there's a significant chance he will be stillborn), there will be nothing heroic done to save him. I'm too afraid that his ribs will be broken if they pump his chest and in the end, it won't really save him.

Finally, we met with the Neonatologist. She was the best of all the doctors I met yesterday. One of the first things she did was ask if we had a name for him. When we told her, she continued to refer to him by his name, not as "the baby" or "it" or "him." The whole experience with her made me feel like I could trust her with my son. She also gave us options of taking him home or having him transferred to another local hospital so I can visit him. I made the decision to bring him home so that he can die in my arms as opposed to dying in a plastic box a few miles away from Mommy. I want him to feel comfortable before he goes.

Well, that was my Magee experinence from yesterday. And let me be the first to say that I was relieved. The first one was not a positive experience, so I was glad to have this day. I cried all day, but I know that this is something I have to deal with.

This is dedicated to my son...

2008-10-21T20:26:00.000-04:00

Hello world. This blog is specifically dedicated to educating people on the genetic disorder called Trisomy 18. Please make sure to pass this on to anyone and everyone cause this disorder is not nearly spoken of enough.

Trisomy 18 is a genetic mutation of the 18th chromosome. Instead of the normal two chromosomes (one from mom, and one from dad), there is a third chromosome that forms. This disorder causes many congenital defects in the child and a severe to profound developmental delay. Children diagnosed with this disorder usually do not make it past a couple of months of age or they miscarry before their birth.

Now a little about me. I'm a 24 year old woman expecting my first child. I was thrilled and shocked to find out I was pregnant because I'm not married and I was definitely not trying to get pregnant. I'm one of those people who rolls with the punches, so I got over my initial emotions and focused on my baby. The father was excited at first, but the relationship wasn't working. He decided to leave me behind with his child. After some time, I got over to the fact that I was going to be a single mother and started looking forward to the future I was going to have. I moved home with my parents to get back on my feet, and they have been nothing short of amazing to me and my child.

My story truly begins on October 7, 2008. My local doctor had me get an ultrasound to check the anatomy of my baby. After 2 ultrasounds with my local doctor, they told me that my little pumpkin was measuring small and it was a concern for them. The doctor was supposed to come and talk to me, but she was unable to discuss anything with me. The office scheduled my appointment at Magee Women's Hospital for the next Tuesday so that I could have a Level II ultrasound. I asked my mother to go with me because I had concerns of my own and didn't want to go alone. She agreed.

That day, we drove to Pittsburgh and had lunch like it was a normal day. I signed in and waited patiently for my turn on the table. The ultrasound technician came in and went about her normal business. She didn't talk much the whole time. I was sitting there with my mother for over an hour before she said she needed to get the doctor to discuss some things with me. The doctor returned and started his screening.

After several painfully quiet minutes, the doctor looked at me and asked, "Why were you sent here today?" I responded by telling him the doctors at home told me my baby was small. He continued by saying, "Ok, well we have a number of concerns here. We're going to start at the top and work our way down."

He showed me my baby's brain and told me it wasn't developing properly. Next was the heart and showed me the hole in the two bottom chambers. His bowels came next and they are twisted. He then showed me his feet are clubbed and his hands are clenched. He then concluded with, "All of this put together leads us to believe that your child has a trisomy condition. I'm sure you've heard of Trisomy 21, which is Down Syndrome. This one is called Trisomy 18 which is like Down Syndrome, but it's much, much worse." Instantly, I turned to my mother and burst into tears. He told me that he was going to send me to the echocardiologist to look at my baby's heart to see how bad the hole in his heart was. Then, I was to meet with a genetic counseler to discuss what Trisomy 18 really was and what I was to do next. After that, I was going to go back to the ultrasound room to have an amniocentisis done to confirm the results.

The echocardiogram showed that there was a definite hole in the heart, but it was fixable. The genetic counselor informed me further about the disorder. She told me everything that I had listed in the first paragraph. Following that, I went for the amnio and was told that I would get the results in two days, but they would try to let me know sooner what the results were.

My mother and I left the hospital, shocked and angry about they whole day. I wondered who to blame, who to hate, what to do next. I knew I had to carry to term because I was 33 weeks. I knew I would never have gotten an abortion anyway because of my beliefs. I knew the baby shower was scheduled for that Saturday and I knew I had to inform everyone about what was going on. My mother and I called people for the rest of the week and let them know what was happening and I even wrote a blog on Myspace.

I decided to do this blog because it will be specifically about Trisomy 18, my experience and my newfound crusade to push for the education of this. I had no idea this disorder existed and I've taken child development courses throughout my education. So now, I've decided that this and all Trisomy disorders need to be in child development books and there needs to be better education for health professionals and parents alike so that people will know how to deal with this devastating diagnosis.

This blog is dedicated to Caleb Alex. I spent 8 months planning a future with him, and now I'm spending the last month of my pregnancy trying to make sense of everything that is going to happen now. This blog is dedicated to the mothers, fathers, grandparents, aunts, uncles, and siblings that have ever had to deal with this horrible diagnosis. Our children will not have suffered or died in vain.