Tuesday, November 22, 2011


He rustled a bit in the covers as I peeked around the crack in the door, confirming my suspicions that he was indeed waking from his nap. I crept up to his side of the bed, ducked my head under the top bunk, and was greeted with a sleepy smile and arms outstretched. As I snuggled in on the wall side of the bed, he wrapped his soft, skinny arms around my neck and pulled me close until our foreheads touched. I brushed the tip of my nose across his cheek. Even after almost-4 years, his skin is still so soft.
"You're my snugglebug. Snuggle, snuggle, snuggle." he uttered as he somehow inched his tiny body closer to mine. It's a ritual, these few minutes of cuddle time when he wakes. Oh, how I wish I could bottle up that feeling, those smells, the emotions of that special time together. That love.
Lately, my thoughts have often gone back to those first few months of his life. He was a little over 2 months old when our neurologist took account of his symptoms and instantly said he thought our son had SMA (a neuromuscular disease with usually a very short life span). Our world seemed to crumble for a while surrounding that appointment. It was our first realization that Nathan's serious symptoms weren't transient like we had hoped, that he was more than likely facing something that would dramatically affect his life, and that his life was indeed in jeopardy. Thankfully, we realized a few weeks later that Nate did not have SMA, but those terrifying few weeks were our induction into the fear of wondering what our son may face due to the genetic defects of his body.
To say that we were scared and heartbroken those first couple of weeks after that initial neurology appointment is a vast understatement. I prayed for God to heal Nathan's broken body. But in those same prayers, I would beg God that if it was his will for Nathan to die early and be completely healed in heaven, that he would take him quickly...soon. They were the hardest words I had ever uttered, and the prayer was two-fold...

At that point in the overwhelming information and emotional overload of the new medical world we had entered, I was horribly frightened that Nathan would suffer through the durations of his life with the frailties of his body. As parents, we automatically want to protect our children from the pain and sufferings in this world, and it was excruciating knowing that I could not protect my son from his genetic flaw. But what I didn't know then was that my views and expectations of the "suffering with a disease" I had imagined were skewed by fear. Yes, Nathan's life is different. His body does not work like it should, he lives with daily pain and discomfort, and he is not able to keep up with kids his age...but, he is not suffering. He is living...and living happily, joyfully, and full of zeal and laughter and enjoyment. Simply put, his life is amazing. That was something I could not foresee during those grueling first few weeks of his life when everything looked so grim.
But the main reason for the difficult prayer was sadly a purely selfish reason. The little guy who I had carried inside of me for 9 months, and who I had held in my arms for a few weeks, had stolen my heart like all of our children do. When we were told that his life could be shortened, I was literally afraid to love him anymore than I already did. I was afraid to love something so dear to me that could be taken away, and I knew that I could not protect my heart from loving him more each day. I had no idea that amidst the difficult, painful, and arduous circumstances that encompassed my son's life, that he would grow to show honor and glory to our God each day through his multiple trials and tribulations on this earth.
"Heavenly Father, please heal my son's body so that he may live a long life. But if that is not your will, please take him. He is your child. I freely give him back to you."  That was my heart-wrenching prayer during those excruciating first few weeks of Nate's life.

And in response, God spoke to my heart through his word with instructions to trust him: "O taste and see that the Lord is good: blessed is the man that trusteth in him." Psalm 34:8, to know that he was always in control: "the Lord is in his holy temple: let all the earth keep silence before him.” Habakkuk 2:20, and to give him honor and praise and gratitude, even through the hardest of trials: "O give thanks unto the Lord, for he is good: for his mercy endureth for ever." Psalm 107:1
This year, I am thankful that God hears our prayers but does not answer some of them. I am so very thankful that our omniscient God knows every intricate detail of our lives and how to lead us through the mountains and valleys. I am thankful that while he has not taken away Nate's disease, he has given us the tools and attitudes to live a joyful and fulfilling life amidst the trials we all have been given.

I am thankful for today...that I can kiss my husband when he gets home from work each day and hug my girls before they walk into school. I am thankful that we have been given the gift of not taking these precious years together for granted. And I am thankful for the little fingers that still wrap around my hand, for the little brown eyes framed in beautifully long eyelashes peering into my own eyes, for that coarse, brown hair that I love to run my fingers through, for that smell...however metabolically smelly it may be at the time, for the sword and gun fights, and for the belly laughs that I can't get enough of hearing. I am thankful that God knows the course our lives will take and how to prepare us along the way. I am thankful for the knowledge that God is on his throne and forever in control.

"O give thanks unto the Lord, for he is good: for his mercy endureth for ever." Psalm 107:1


Amy Young on November 23, 2011 at 10:42 AM said...

I was so THANKFUL to read your post today because YOU SAID what I tried to say for SO LONG to people about my son as well. He was sick and suffering and three months old and never been off of a ventilator and I had never held him and I tried so hard NOT to love him the way I knew I did. I LOVED him but I put up a wall to protect my heart and I didn't realize for so long that I was doing it. I was so glad to read what you wrote...to know someone else felt this way. You said it with such grace and elegance......Thank you! And, by the way, your kids are SO gorgeous!!!!! Bless you and yours!

Kyla on November 23, 2011 at 1:17 PM said...

This was gorgeous! I feel the same about KayTar and her struggles. Sometimes I feel like God looked at me, saw exactly what I needed in my life to turn me into the person He wanted me to be, packaged it all up with KayTar and sent her to me.

Christine on November 23, 2011 at 8:50 PM said...

Amber, I am just so moved by your words. Happy Thanksgiving!

MJ on November 23, 2011 at 10:19 PM said...

Can I share this? I will probably never have the honor of being a parent but I learn from every post you make. Well not EVERY post but you know what I mean. I love your perspective on the things we all have to be thankful for, especially friends like you. I hate that the possible diagnosis of SMA is why we know each other but I consider myself beyond blessed to have the opportunity to know your wonderful family. Love you guys! Happy Thanksgiving!

Amber on November 23, 2011 at 10:21 PM said...

Absolutely, MJ. Everything I write on here can be used by you. :) I am so thankful I know you...regardless of the circumstances!

The Martin Family on November 30, 2011 at 11:15 PM said...

I don't think I have ever been able to articulate what you wrote - so beautiful and so real. Thank you. I know we don't know each other well, but your post helped me feel a little bit better about wanting, feeling and praying for the same thing. Stay strong.

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