Thursday, October 8, 2009

Baby Tristan Day

One year ago today we sat in shock and pain as we had said goodbye to the sweetest and most precious baby we had ever had the blessing to have known.

Mr. Tristan had been born having had a stroke in utero which destroyed the frontal part of his brain leaving him with a sac of cerebralspinal fluid that kept increasing in size over the months of his short life. Officially named hydranencephaly- very rare, but reality for our boy.
After his birth, mom had been told he would not survive and she was unable to care for him. He was a tough little man, determined to live yet with his issues, he was in much pain. I "wore" him in a sling for 3 weeks to teach him a mother's healing touch. Neurologically he did not respond to "night time is for sleeping" and it took 3 weeks for us to get night nurses steadily. He thought touch was pain- having been in the hospital for a month and had surgery for his stomach button for feedings, he could not suck to eat enough, I taught him LOVE.
After being asked to take him, knowing he was going to die, but also knowing he was 4 weeks old, a precious life, we said "YES!" We determined that if he was going to have a short life, it was gonna be GOOD. He was loved upon, his needs were met first, we wasted not one minute. He learned that kisses were sweet, that mother love never ends. He would coo, he kicked his one leg in joy while he was awake. He grew, although sadly, so did his head, but we never saw that big 'ol head, we saw our baby boy, the son of our heart.

We know he came to us to give us a lesson, I was 41 and told, hold him, love him, let the laundry go, and I DID. I didn't care if the dust bunnies danced, 'cause Tristan and I were snuggling:) He smiled for me and made noises when he was happy, amazing when we were told he would be a veggie. We laughed and cried as we said the only veggie he had was a pumpkin head, said totally with LOVE. We loved every tiny toe he had, that pumpkin head, that our fantastic kids said " hey more room to kiss on." And kiss they did, his head was chapped from kisses most of his life, but that wasn't stopping us, we kissed away.

My arms ache less these days for him, it's been a year now, at first I physically felt pain when my arms were without him. We are healing. He was in our hearts and he will stay there forever. He will never be forgotten, he gave so much to so many. We are thankful he is pain free and whole now.

Today we will buy baby blue balloons, we will write him love notes on them and the kids will release them to watch them fly off to Heaven, to our precious baby boy, a Gift from God that we thank Him for. We are better people for having known you Mr T, forever our baby, thank you for sharing your life with us- I was PROUD to be one of your mommas:)
We thank you precious baby, for the 9 months and 12 days you fought to stay with us and we understand you needed to go.
PS-- I'll see you in Heaven my little man, you better be right there at the gate when I come -calling mumumumumumum, my love for you will never die.

6 comments:

Holly said...

That is just completely precious. Thank you so much for sharing. I will say a special prayer for you today, since I know you are missing your boy.

Ladyblog said...

What a sweet tribute to a precious little boy!

Ali said...

Thanks for sharing your wonderful story...of life with Tristan. My little man, Brayden, is also living with hydranencephaly...with God's will, he is doing amazing and we are very blessed!

Thinking of you and your little man...

http://www.caringbridge.org/visit/braydenharper
http://hydranjourney.blogspot.com

Chelley said...

such an amazing little man and to be blessed with that days with him ..

big hugz

my first born son had Anencephaly he died too soon...

Sina said...

Hi! I have a 4 year old daughter named Emma who had an in utero stroke. She is a true blessing to our family! While reading your blog I thought what an amazing woman to take on so much! May God bless you and your family!!

Sina Pitts

sinapitts@att.net

Sina said...

Hi! I have a 4 year old daughter named Emma who had an in utero stroke. She is a true blessing to our family! While reading your blog I thought what an amazing woman to take on so much! May God bless you and your family!!

Sina Pitts

sinapitts@att.net