Wednesday, May 11, 2011

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.


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.



Kristy said...

Precious! :)

Linda said...

Hi Jenn: What a beautiful update. You are so blessed. Daylon is one very lucky little boy. Always praying for your family. Give Daylon a big hug for me. Love and Hugs Leah's Nana

TinaZCA said...

Wow...what a tough year it's been! Praise God that your prayers to giggle and play with your boy have come true here on earth. Knowing you'll be together for eternity is a blessing, but so happy you can spend more of that eternity here on earth. What a precious gift. God Bless you all!


Anonymous said...

Jen; What a wonderful letter to Sweet and Precious Baby Daylon. He is such a miracle and we love all of you so much. Hoping & praying that things are going well for Daylon and all of you. What a wonderful mother you are and Daylon and the other kids are so blessed to have you for their mother. Heavenly Father knew what he was doing when he sent these beautiful children to you, he knew the love you have for them, the caring, inspiration and faith you have.You are truly an eternal family. Give Daylon and the other kids a big hug for us. We Love Them dearly. Baby Daylon is in our thoughts and prayers as are all of you and your family. God Bless. Hope to see all of you again real soon. We are here if you need anything.

All Our Love;
Myrna & Dwight CA

jeanine said...

Jennifer you made me cry!

Gilda said...

Absolutely beautifully written from a mothers heart. Thanks for sharing, it sure had me in tears as well. Love ya Daylon!

Jan's Blog said... that ripped my heart out and handed it to me. I can't begin to imagine the agony of that night, and the journey that has brought you to today. You have a beautiful boy with a beautiful spirit and I think he'll stick around for awhile. He's got so much living to do, and now he has the skin to do it with.

I was so sorry to have missed your talk in my ward a couple or so weeks ago. I was struggling with my own illnesses and up until the very last moment I thought I was going to make it, but sadly didn't. I did get to hear from someone that did attend that it was a wonderful evening with you and your family.

My prayers remain with you and Daylon and all!

Amy F. P. said...

This little boy is a wonderful miracle. Thank you for sharing your miracle and journey with us.

Mom to Many said...
This comment has been removed by the author.
sharon kaye said...

What a journey you have been on. Your poem is beautiful. Only a mother's heart could write something so tender. Thank you for sharing.

Emily said...


Anonymous said...

Beautiful. Can't stop the tears. I pray for you and your family daily. I have been praying for Daylon to do well on his surgery this week and to start gaining weight, for his kidneys, eyes, speach, and his smile to be back.


Beautiful Jennifer...... I loved it!! What a great keepsake :) I stink at writing any kind of poem!!! I am thinking of you guys and hoping things are looking up !!!!