Saturday, March 6, 2010

I must not ever forget.

Jack's 4th birthday is coming up. While in a normal family this would be an exciting time, I can't help reflect on what almost was. I have said it before, that I forget. I'm not sure if its a defense mechanism or what. But when he is pinching me, or throwing a hissy fit because I won't get him cereal fast enough, or becoming limp and throwing himself on the floor when I need him to do something... I forget. Even when he is the sweetest little boy on the planet, and grabs my face with his tiny little hands to give me a kiss... I forget.

To catch up newcomers, when I was 27 weeks pregnant, Jack was diagnosed with Semi Lobar Holoprosencephaly. They told us he wouldn't live and gave us the option to terminate, twice. Looking back, it seems as if that time period was so short. The... "He's going to die" time period. So short, I forget.

But I don't want to forget. I mean, I do. But I can't.

When we first found out about everything, we SCOURED the internet looking for support. And did we ever find it! The first thing we found was the HPE Yahoo group. Our doctors gave us no hope he would survive. No hope he would be any kind of normal even if he did. But this amazing group of women, gave us HoPE. That is how we refer to it. Holoprosencephaly's acronym is HPE. So HoPE means something special. More than just hope. :)

I try to keep in touch with these sweet families. Every once in awhile I let one of these babies take a piece of my heart. The latest is Kara Faith. Her Mommy shared her with me(and others) daily, during a very difficult time and I am a better person for it. Now I want to share her with you.

Now the song. The song is so beautiful. I HAD to find out more about about it. The first thing I came across this video about sweet Audrey, who the song was written about. As I looked further into the song, I stumbled upon these videos telling the story of Audrey.

As I watch them, I feel like I am watching myself tell the same story. But as I watch it, it I am struck by just how much I have buried and forgotten. I was dumbfounded, how parallel our stories are. We too were first told he had Downs Syndrome. Then he had swelling on his brain, then a cleft lip... it just piled and piled. We too were told he would die in-utero, or only live a few hours. While we looked into funeral services, he had hiccups and was doing flips inside of me. We made a birth plan with two sides. One side if he lived, one side if he didn't.

But there is one GIANT difference. Jack, is fine. Jack is beautiful, and alive, and smells like a little boy. Were they wrong? Or was he healed? He wasn't supposed to live. He was supposed to leave us. But he didn't.

These two beautiful girls did. As I have prayed for and read about these families, I am struck once again with the overwhelming guilt that mine is fine. I don't even know if you can call it that. Can you call it, "The One Who Survived" Syndrome? I don't know.

Can someone explain to me... why I got to keep mine, and they didn't? I know, I know, God's Plan... Well sometimes... I think God's plan stinks. Why do babies die? Why do Mommy's get cancer and leave their babies? Why are people killed in car accidents? Why are some people healed and others are not?

Now, before you get all wacky on me... I am BEYOND grateful for my Jack. He has taught me so much. But he has brought me into a world, that some days, I wish I didn't know about. Sometimes I long for the days when I wasn't reminded on a daily basis, that babies die, or struggle everyday to live.

But... MORE times, I am SO thankful Jack came to us the way he did. I am so thankful to my Heavenly Father for having enough faith in me, to send Jack to us. For giving me a voice to to tell our story. I am truly honored and immeasurably blessed to live in the world that Jack brought us into.

And I must not ever forget... how we got here.


Laura Jansson said...

Thanks for sharing, Jenny! You are a strong woman! Thank you for reminding me what little blessings our healthy kids are, and what a little miracle Jack and other kids like him are. :)

Molly Sue said...

I will only disagree with you on one point...all those unfair things that life brings, "they ain't no plan of gOD".

Your Jackie, is the bomb. Love you girl!

Suzi Heiner said...

I feel guilty too. When Ezra was born just 5 weeks after Jack, on Jack original due date, I thought it was God's way of connecting them. Then I found out the day I brought Ezra home we had to move far away. On one hand I thought it was good because I didn't want you to feel sad seeing Ezra doing what "normal" babies do. At the time we weren't sure if Jack would miss milestones, but if I remember correctly we expected him to. But he didn't! Now it's all come full circle and now I find myself wishing my Ezra were more like Jack. Easy going, sweet, gentle, and so lovable!! Not that Ezra isn't. But Jack sure could teach him a thing or two. :) I love you, Jack and the whole family. I'm sorry I haven't been able to be there in Utah for you. You have taught me so much! Thank you!

Annie of Blue Gables said...

Those are heart-breaking videos. I listened to them and my heart went out to them.
And to you. Thank you for this insight. You are a sweetheart, and I am sorry your eyes had to be opened to this world. My trials were in-law related, and I was able later to relate totally with a daughter and help her through her problems. So in a way, I was glad for those trials. I know they are NOTHING compared to what you have been through. I really love you. Don't know what else to say

Lisa M. said...

It's ironic isn't it? How grateful we can be for life lessons and how we can agree we wouldn't be the same had we not endured them, yet the longing for the blissful life the way it used to be, before all the lessons is something I ache for, sometimes.

I appreciate your openness regarding this subject. It is always nice to know that I am not alone, in the way i feel and respond to things.

Hope you are well.

Bugg's mama said...

Awesome awesome post. Thank you!

Love, Bree