To my baby boy

  Dear Daylon,
 
  It will be a year this week that we arrived in Minnesota for your Bone Marrow Transplant. We were all so excited and so scared for what this opportunity might bring to your life. Your big brother Caleb was the proudest 3 year old I've ever seen. He would tell anyone (from the mailman to the doctors) the same line: "My name is Caleb and I'm three years old and this is my brother 'Dane-nan'. I'm going to be his donor transplant and makes his boo-boos go away!". To this day, he loves to brag that he has "Strongman cells" and now you have them too. Your skin looks so beautiful. Today after dinner when I lifted you from your highchair you snuggled your face in between my shoulder and my neck and my heart said a prayer of gratitude. Your life is so different now. You still love to cuddle up with a blanket, but now the blanket is over us and not separating us. Flying in the air with Daddy like the other kids is something we never thought you'd know and I actually remember crying about it. Now we know that it's your favorite way to play. Although you are still not quite as healthy as we wish you were, my heart is full to know that you aren't in constant pain.
  This morning as I was unpacking, I came across a poem I had written one night when you were only a few months old. At that time, there was no hope given to you as the transplant program was not open to all severe forms of EB. It was the hardest thing in the world to rock you to sleep every night knowing that you would return home to our Father in Heaven before I could get a chance to see you grow. On this particular night, I had given you an especially painful bath and dressed you in your bandages . Your skin was very broken down and raw and you lost more blood than usual. As with most nights back then, I began to feel a little panicked that you would be taken from this earth within a very short period of time. After all the dressings were on and you were gooped up with Aquaphor, I wrapped you up in your big fluffy blanket and sang to you to try to calm you down. Your little head was all I could see through the heap and as I watched you fall asleep, a flood of emotions overcame me. Mostly, I just felt the blessing of being your mother and the mother to your four siblings. I grabbed a pen that was resting near my rocker and the words just spilled out on the paper.

Daylon

Watching you sleep peacefully in my arms tonight,

Wondering if we're ever gonna win the fight

I'd give anything to know how to make everything alright

and turn all this darkness into something bright.

Sweet little boy of mine,

I wish I could stop the hands of time.

In this moment while you sleep, everything is fine

and I'm gonna lock it away in my heart for all time.

I wish for you a life where you could cuddle, crawl and play

And never have to shield yourself from the sun's golden rays.

Pain and agony would never consume you as you lay,

helplessly waiting for the light of a new day.

Sweet little boy of mine,

I wish I could stop the hands of time.

In this moment while you sleep, everything is fine

and I'm gonna lock it away in my heart for all time.

One day it will come, that you'll be EB free,

and all the sorrow and suffering will flee.

Then I'll kiss you and tickle you as you giggle with glee!

My son, I'm so glad we can be together for eternity!

 I love you, my Sweet Boy.

Love,

Mommy