July 28, 2012

Dear Sam: 1st Birthday Edition

Dear Sam,

Little man, what a year it's been. Happy first birthday. I don't know a single person who deserves a handful of icing more than you.
Today was a low-key birthday, as far as first birthdays can go. (We are saving the big bash for next month as we are going to give you and your brother a joint birthday party for as long as we can get away with it.) You started the day nice and early with your dad, with a bottle and some Olympics. You then spent the next few hours rolling around on the floor, practicing your new army crawling skills and evasive maneuvers trying alternately to escape and follow your big brother around the room. After an unsuccessful attempt at lunch, you took a nap and prepared for your big afternoon of cake smashing.
I hesitated on making you a cupcake since we are still struggling so much with solid foods. I even went so far as to make you "cake" out of watermelon and cut up fruit. I figured you could at least suck on it and get some enjoyment out of the process. However, when I woke up this morning and peeked at it in the refrigerator, it just didn't seem right. It just wouldn't be the same to hand you a hunk of watermelon with a candle in it. After the year we've had, we needed to really celebrate this momentous occasion. So I shelved the fruit, grabbed a cake mix, and whipped up a cupcake worthy of smashing.

Unlike your brother, you did not hesitate for a second to plunge your hand into the icing and get a taste. You managed to icing all over your face and clothes and chair, and yet, I'm pretty sure very little got into your mouth. So, it all worked out. I got cute pictures, you got to make a mess, and we didn't have worry about how you swallowed any of it. Win.

My sweet boy, you have been through so much this past year. I often write about how hard this year has been on us, on me. But you...my dear little boy, you've had to endure so much. I'm so very sorry about all of it. I wish I could have spared you all the sickness, all the surgeries, all the doctors, and that little lump in your tummy that makes sure your heart pumps the way it should. I wish I could say that I'll never let it happen again, that I will protect you from all harm, but like so much of this last year, I just have no control over any of it. 

But through it all, you've shown us what it means to be resilient. You taught us how to smile just days after having your chest cracked open. You taught us how to laugh with a nasal cannula in your nose. How to sleep through nurses checking your vitals. How to want to roll and crawl and sit, even when your muscles don't cooperate and your scars get in the way. How to grow and be strong and overcome every obstacle that's placed in front of you.

You are our very own superhero.

You made us learn more than I ever thought was possible about pediatric cardiology. You are introducing us to the complex workings of things we take for granted...like swallowing and chewing and breathing. You've opened our eyes to this group of people who were mostly invisible to us before you came into our lives. I see people with Down Syndrome everywhere I go now. It's not like they weren't there a year ago, but now I have the eyes to see them. You've brought amazing people into our lives: from the families who've become friends in our DS community to the therapists who sit on our dog-hair-covered carpet each week.

You are changing us. You are making us better.

This morning, as 10:21 rolled around, you were sitting in my lap, belly laughing as I got your tickle spots. I thought back to that moment a year ago, when you were taken from that safe place in my body where your heart defect was on pause and we were totally clueless about what this year would bring. There are days when I wish I could take you back there, back to where I could keep you safe and whole. But as I watched you laugh today and felt you snuggle into my neck as the giggles subsided...I'm just so glad you are here, Sam. 

Happy Birthday, baby.


July 7, 2012

My Truth

I'm kind of the ultimate lurker when it comes to reading blogs. My Google Reader easily has 75 subscriptions to sites and blogs that I follow...some of which I've followed for years. I have felt connected to, challenged by, and comforted by these writers during all stages of my life. It's a diverse group of people that I take the time to read from every day. I read "Mommy blogs" before I was ever a mother, and I follow about 5 different Young Adult authors now that I'm well beyond that particular demographic. However, despite how much these other writers are a daily part of my life, I rarely ever leave comments or engage with other readers. Comment sections can be a scary place on the internet these days, and as a general rule, I don't even bother to read them, let alone join the fray.

This morning, I broke my long standing lurking tradition. Not long after I got up, I settled down in front of the computer to catch up on the internet. Waiting for me in my reader was this post from Momastry. I came to this site like a lot of people after her essay "Don't Carpe Diem" went viral earlier this year. After reading, and loving, that essay, I spent some time going through her archives and added her to my subscriptions. I like Glennon a lot. I like what she stands for, how she loves, the grace she offers and accepts, and the opportunities she creates for the internet to do amazing things through tiny donations.

However, this latest post kind of stopped me in my tracks. To begin with, I didn't know Glennon's story well enough to know that her son didn't have Down Syndrome. I thought I had just missed that bit of information when I had gone through her archives. So, when at the end of the post, she revealed that her prenatal diagnosis of DS was, in fact, wrong and her son was without that extra chromosome, I felt cheated. My hopes of finding another person who was traveling down our road with grace and courage were dashed. The rest of her essay was tainted for me because of this misconception on my part, which I fully realized and tried to take into account. I know she wasn't purposefully withholding this information. Her son is 10 now, I think. I just didn't know. So, the twist at the end of this birth story was not one I could immediately overlook to see her bigger picture of celebrating children with DS. It was the exact opposite of our birth story, and so it made my heart hurt.

I know that was a strong reaction. Maybe even an over reaction, except for that it felt true. And so I de-lurked and commented. Now, I know you can read through the comments yourself, so I won't rehash what I said and how others responded. I'm glad I did it, and I knew from the beginning that she had only good intent in sharing her experience with Down Syndrome. I never doubted it.

This essay and the comment section has been stuck in my head for over 12 hours now. I kept checking in on them throughout the day to see how others responded and to take time to connect with those who reached out to me. It's been a hugely positive experience for me and may convince me to de-lurk a little more often.

However, the thing I keep going back to is how often it gets said that children with DS bring joy and sunshine and rainbows. How they are special and happy and different from the rest of us in such great ways. So many of the comments on the essay and the Facebook page reinforced it. And there are so many writers and parents out there that can substantiate that. I love them all, and they bring me so much hope and peace on days when I don't have any. I love that people have taken the time to write books and blogs and welcome packets to encourage, uplift, and uphold those of us who have this diagnosis in our children. I have spent many a night pouring over them this past year.



It's not just joy and sunshine and rainbows that this diagnosis brings. It brings grief and pain, uncertainty and fear, medical bills that can devastate you and doctor's words that can literally fold you over in their heaviness. This diagnosis can and has repeatedly broken my heart.

I feel like I'm not allowed to talk about those parts. I feel like it's my job to shout from the rooftops how amazing my son is and what a blessing he is. Part of me is terrified, even now, to hit publish on this post because of the "what if?" What if some woman just received a prenatal diagnosis and is wondering what to do? 90% of women chose to abort. 90%. That is a staggering number that breaks my heart. And I feel like every negative thing I say about Down Syndrome will reinforce that number. Every time I admit to a night that I am bowled over by grief, or acknowledge that my almost one year old can't sit up by himself, or when I focus on the hard instead of the good...I feel like I'm responsible.

I know that isn't true. My website doesn't generate nearly enough traffic to matter much. But it's the idea that gets me. That if I'm not playing my part, if I'm not being uplifting and strong and courageous 100% of the time, then I'm not worthy of being a parent of a child with Down Syndrome who writes publicly.

Look. I know that's bullshit. I know that I'm entitled to handle this journey however I deem fit. I know it, and yet...I feel pretty lonely in my journey. I don't find a lot of stories about the struggles.

I know it's in my personality to focus on the negatives first, before I can see the positives. I know this about myself. Yet, I don't want that to be my legacy to Samuel's journey. I don't want to be the Debbie Downer of the Down Syndrome world. Wah-wah. I want to look for the good and to focus on finding the beauty. 

But for me, in order to do that, I need to share the bad stuff, too. I need to be honest with myself, and subsequently, with you, and just admit that some times I want off this ride. I want my baby to be whole and perfect and without that extra chromosome. I want to shout from the rooftops that spending 6 months trying to get your son to willingly eat and swallow a spoonful of rice cereal and STILL NOT SUCCEEDING absolutely, 100% blows. I've lost track of the number of times I wanted to throw a bowl of oatmeal at the wall out of frustration during feedings.

Please, please, please don't misunderstand me. I wouldn't trade my Samuel for anything. If I had known before he was born, I would have changed nothing. He is ours. Our son. Our beloved. For as long as he is in our care, we will love him and cherish him and empower him and move heaven and earth for him. He brings enough joy to temper the pain. The smiles and giggles while he is pushing the cereal back out of his mouth help keep me from dumping it over his head.

And please also know that I am completely aware that our journey with DS isn't even as hard as it gets. So many parents would kill for the past 11 months I've had with my child. Some times that extra chromosome is a cruel, cruel thing and takes one of these babies before they've even had a chance to frustrate the hell out of their parents. Trisomy 21 can be so medically devastating and there are parents out there with hearts more broken than mine. I know. And I'm so sorry.

With all these thoughts running through my brain and my conversations today, I think it comes down to this: I need to acknowledge my truth. My story. I need to not be afraid to share it, nor judge those who have a different truth than mine. I will try to not speak in generalizations about this diagnosis, because I don't appreciate it when others do. I need to have enough grace to not only to extend to others, but to myself also.   These were lessons I wasn't expecting today, but God gave them to me anyway.