Friday, March 2, 2012

The First Year

I once asked David to refrain from making comments about Juliana's age. Though he made these comments in a positive light it was just too much for me to be reminded of how old she was. This was before we had a diagnosis and comments about her age seemed to be a cruel reminder that something was wrong.

Today is Juliana's birthday and while I can't say that I am incredibly excited about it (probably because I'm a little jaded when it comes to such things) I can say that I don't have any sadness over it. This is a huge sign of my own healing as we've finally reached a new normal.

What I am excited about is closing this chapter of our lives. I am not sure that many people really understand what the first part of Juliana's life was like; there are only a few people who I think really "get it." So how to describe it?

Terrifying.

Horrifying.

Loneliness.

Helplessness.

Darkness. 

This really has nothing to do with my own post-partum depression which just added another layer of helplessness and darkness on top of an already very difficult situation. Juliana was just so, so sick and there were no answers. To have to continually comfort a baby who is in continuous pain is a hard path to walk. I absolutely dreaded feeding her because it hurt her so much. She used to cry and cry until she just completely wore herself out and would pass out in my arms. In those early months she had very few happy awake times.

I remember holding her while she was hooked up to the pump and screaming; praying for God's mercy. Not long after that GAPS found us.

To fully close this chapter, I want to go back to my pregnancy with Juliana. When I had an anatomy scan as a part of routine prenatal care I was told that she had a two vessel cord, but that this could be just a normal variant. Later I had several visits with a perinatologist. I sought out these visits because I wanted to make sure that Juliana did not have a condition that would be incompatible with life outside the womb. The doctor told me that while Juliana looked good, he couldn't make any guarantee that she didn't have a chromosomal condition such as Down syndrome. My thought at the time was "ok, no big deal." That was ignorant. I don't mean at all to devalue people who aren't perfectly healthy. But it is a big deal to have a child who has major health problems such as those usually associated with chromosomal disorders. It is a big deal to have major developmental delays. And then we had an extra layer on top: it is a big deal to have a child who can't safely eat most foods. It is a huge, huge deal to not be able to feed your own child.

Sometimes I see people say that they wouldn't change anything about their child with Kabuki syndrome or Down syndrome. That's still hard for me to understand. If I could turn off Kabuki, I would do it in a heartbeat. But I can't deny that Juliana has changed our lives for the better. Life is certainly much more challenging than it would be otherwise but it contains a quality that it didn't contain before... something much deeper and richer. I wouldn't change that.

This first year has been hard - probably (hopefully) the hardest year we'll have. We still have a long way to go and so much work to be done, but we are finally out of crisis mode. I'm told that things will continue to get better but that there will always be something new popping up - a new specialist to consult with, a new device to pay for, new paperwork to file. New worries. New joy, I hope. I no longer fear what will come.

My heartfelt thanks to:

David. He thinks that he is not good at comforting but time and time again he proves that he is. He makes baby food. He is supportive of the crazy things that I want to do.

Calvin. He's always been an inspiration to keep going and to find a balance. I couldn't have picked a better big brother for Juliana.

My mom. She always asks if I need anything. I don't know what I would have done without her this past year.

Becca. Although she lives in Boston she finds ways to be here on a semi-regular basis. She is like a second mother to both of my kids. My only complaint is that she doesn't live closer.

Thank you to everyone who has prayed for us. Thank you to all the GAPS and special needs moms out there who are sharing this journey with us.



4 comments:

  1. I am without words (perhaps because I am crying too hard). You are such an amazing mama. That word 'amazing' seems so over-used these days and so small in comparison to what you are. What a hard, *hard* first year. And what amazing hope and progress. Way to go Baby J! And way to go mom and dad for continuing to push forward. May your road ahead be one of unexpected joy, blessings beyond expression, and growth you could never find without these stretches, knowing the Lord holds you safe and firm, and prepares a path for you all. A future and a hope. Can't wait to see what J's holds. XOXO

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  2. Have I told you how much of your story has given me hope in those dark hours? The strength of a woman I have never met has lifted me in my own times of loneliness and fear. Happy birthday to your beautiful girl and congratulations to you and your husband, and Calvin too! What a wonderful support system Julianna has in all of you!

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  3. Beautiful Liz, just beautiful. You, Juliana, your family, your strength. Beautiful inspiration. Thank you for sharing and giving us a glimpse of your world, struggles and triumphs.

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  4. You are absolutely amazing! Juliana is so beautiful! Thank you for sharing your story so openly and honestly with the rest of the world!

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