The
holidays are nearing and there is Christmas cheer all in the air. I look
forward to this Christmas for Annabelle, as last Christmas was like no other that
I never want to relive. We couldn’t leave the house. Annabelle was holding on
to dear life with everything she had and she was so exhausted. We couldn’t even
see Santa bc the dangers of germs and energy it took was just too much for
Belle’s weak body. Angels around us arranged for a special evening, Santa came
to our house instead! He sat with the girls and talked with them. Annabelle was
in shivering pain and scared of St. Nick but she watched him from her comfy
chair and pillow. I’ll never forget that evening when Mr. and Mrs. Claus
brought Christmas to our home. I’ll never forget how magical it was for
Madelynne to be able to see Santa and I’ll also never forget how painful it was
as parents to be in the shoes we were wearing in that moment.
We’ve
come a long way since last Christmas. The holidays are much brighter this year.
Although we do not have a diagnosis, we have only a few more answers for sweet
Annabelle, overall, we are maintaining her health and quality of life far
better than I could ever imagine. She is smiling and laughing and playing this Christmas.
She tires easily, she sleeps a lot and then runs spells of not getting any
sleep or rest at all, she has a huge (at least for us its huge) variety of
foods, and then sometimes she cannot eat anything at all. But overall our
spirits and her days are brighter. We have so much more hope for the future
than we did a year ago. Our energy is towards hope and looking ahead, and not
as much praying just to make it thru tomorrow. It’s a good feeling. Equally
exhausting, but we sleep better and smile more. For that I am grateful.
Annabelle
is very excited for Christmas. I wish she would stop telling Santa a different
toy each time she’s asked what she would like. First it was a train, then it
was a puppy, this morning she wanted a Frozen watch. Gracious kiddo!
When Annabelle first got her tubey, it was
painful hard for me to explain to others. I struggled explaining what exactly
the tubey was doing for Annabelle, to her very curious and terrified sissy. Madelynne
didn’t know why we continuously had to hurt her sister to put a straw in her
nose and make her cry. She couldn’t understand how that was helping the boo-boo’s
in her tummy. For other curious children on the playground, they too questioned
and wanted to know why she had a tubey taped across her face. Then came the
time to do the big surgery for a g-tube. Our conversations changed, our fears
and things we had to be careful around shifted. Instead of being careful not to
pull the tubey out of her nose, now we have to be very cautious around her
stomach. The conversation was so hard. Even when trying to explain to adults
just what the purpose of a tube was for, when after all, “she eats, I’ve seen
her drink formula. Why do you need a tube to do it for her?” Then a nurse
provided me with this amazing book, it was called “There’s more than one way to
eat”. I read it to Madelynne, along with Annabelle that didn’t quite understand
at the time. It answered so many questions and really brought to perspective
what we were doing by tube feeding. It helped family and friends gain a
perspective and respect to our world.
When Madelynne started Kindergarten this year,
Annabelle asked why she can’t ride the bus. Mady and Belle both came to the
conclusion that it was because Annabelle has a tubey. They both think she
cannot eat food, because she has a tubey. They think she can’t play in bounce
houses because she has a tubey. I had no idea that this tube would become the
blame for everything Annabelle is limited from in life. It’s not the feeding
tubes fault she cannot do things, it’s her disease and also her undiagnosed
disease, not the tube! I found another book by this author, “My tubey goes to
school”. It’s amazing. I bought it not for Annabelle going to school, but for
both girls when Madelynne went to school. They now understand that tubey’s DO
go to school and a feeding tube has (mostly) no limitations to life, it’s just
a different way some kids eat.
The conversation and struggles do continue.
Annabelle is finally becoming more aware that she’s different and it’s
heartbreaking. She asks where other people tubeys are and if they’re sick. If I
tell them that someone is sick with a cold, her head drops and she asks if they’re
in the hospital (bc that’s our life). A few months ago, I signed Annabelle up
for dance class, she couldn’t believe it! She couldn’t believe she could do
activities like other kids even though she has a tubey! I strive to make her feel
included and associate everyday life apart from her feeding tube. Though for
Annabelle, her tubey is very much part of her everyday life and she does feel
very different. I expected this to come much later, not at 3 years old.
So several months ago, I noticed the author of
the Tubey Books posted her newest book idea. I couldn’t believe it! The pure
genius of this wonderful lady, and fellow tubey-mama. She requested pictures of
real kids with feeding tubes to create an entire book of “Real Kids, Real Tubes”.
It contains pages after pages of children just like Annabelle who are living
everyday life with tubeys. Kids swimming, going to school, having surgeries,
eating different ways, different types of tubes, etc. There is nothing more exciting than finding an opportunity to make your child feel included in this big, big world. That's exactly what this book is aiming to do, and it's delivered :)
The book came out last week and I cannot begin explain the excitement I felt and the butterflies when I saw my daughters beautiful little face on the FRONT COVER of the book! There were thousands of entries of photo submissions, and hundreds upon hundreds that weren't choosen to be used, but Annabelle's pictures made the cut. MULTIPLE pictures even! It's precious. The entire book is so heartwarming and meaningful to Annabelle and our family. It's the absolute perfect tool we needed to continue building her confidence as she pushes forward in a world where she feels 'different'. I loved it, please check it out on amazon :)
http://www.amazon.com/Real-Kids-Tubes-Tubey-Photograph/dp/1492212288/ref=sr_1_1?ie=UTF8&qid=1418667074&sr=8-1&keywords=my+tubey&pebp=1418667118064
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