Bryson's Blog

Living with Trisomy 13

Tuesday, August 29, 2006

Precious Boy


I know it's been a long time since I've updated the blog. I'll be honest with you, I've been in a funk. Straight out, that's what it is (or was). Every time I would come here to try to post something. I found that what I was writing was not much worth printing.

While there are still goings on in the Nault household with the immense care that it takes to be parents to Bryson, one cannot possibly comprehend how hard it is, day to day life. He is fed through an NG tube 2 ounces every two hours so there's not much rest for Dana & Travis, on top of constant watching and listening for his every breath because he still has the apnea episodes. They don't get any respite other than a volunteer dropping by to see them. Even then, they both can't leave. It's so hard being 962 miles away and wanting to be there for my family and wanting to watch Bryson grow and spend every precious moment I may have with him. It's heart wrenching for Dana and Travis, knowing that their son will not be able to read, to see the sky, to know what a bird looks like, to see a tree or a forest or a flower, to be able to know his Mommy's and Daddy's beautiful faces. Today, it was confirmed by an Opthamologist in Syracuse that Bryson is blind.

I prayed and prayed that somehow, he had some sight, even if it meant glasses on his sweet little baby face. But not so. I thought that he might see some light and shadows, but his eyes did not form properly. Trisomy 13 is such a puzzling thing and I keep asking why, why, why? Why does something so cruel have to have happened to Bryson, to his Mommy & Daddy who only wanted a happy and healthy baby.

They have started to spoon feed him a little bit to train his swallowing reflexes. A little tapioca brings a smile to his face. Just knowing that brings a smile to mine and makes my heart melt.

Bryson is 2 months, 20 days old.

2 Comments:

Anonymous Randie said...

I know sometimes its easy to get bogged down and focus on the negatives, and yes, there are a lot of negatives. However, there are a lot of positives here, too. Bryson is here, and he knows nothing but love. He knows his mommy and daddy love him with all their hearts. He knows that he can count on them to provide for all of his needs. He knows the warmth of their arms, the scent of their skin, the sound of their heartbeats... he knows one of the most important things in this life. He loves and is loved. Really, that's what everyone wants, and needs, and he is so lucky in that he already has that. He has an extended family that loves him, too... and although not all of us can be there physically, we can support his support system and make sure that we do what we can to love him, too- even from a distance. Instead of being angry at the injustice of it all, and being upset because its not our idea of ideal, we can be thankful for Bryson... for his presence in our lives, for the lessons in life and love that he is teaching us, and for his help in our growth- emotional, spiritual, and familial. Let's not focus on the things that we cannot change. Instead let's focus on the joy- on the precious gift that Bryson truly is.

3:29 PM  
Anonymous Glenda Parkman said...

My name is Glenda Parkman, and I have a 20-year-old daughter, Rebecca, who has Partial Trisomy 13q, which is the result of a Translocation. [She has a unique extra chromosome in every cell of her body which consists of part of the long (q) arm of chromosome 13 and part of the long (q) arm of chromosome 15. She has more of 13q copied, so her official diagnosis is Partial Trisomy 13q.]

Rebecca's story is on the Photo Album section of a website called livingwithtrisomy13.org. If you've not heard of this site, you may want to check it out, as there are many Trisomy 13 survivors on it - some long-term. These survivors are comprised of babies/ young people/ adults with Full, Partial, and Mosaic forms of Trisomy 13.

There are many helpful links on the site, message boards (public and private), helpful links, and a Treasured Memories section to honor those Trisomy 13 sweethearts who've gone on to be with Jesus.

I loved reading about Bryson!

Regards,
Glenda Parkman

4:55 PM  

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