As I sit here and write… I know it could be worse but could also be better…. I know my pain is little compared to others but also some have no clue…. I face everyday wondering how I can help better my child… I wonder why in this world it has to be so hard for her… I dream of the day she can wake up with no pain… I pray the doctors can one day figure it out.
The past couple of months have not been the best. I am now living in a funk and have became a not so pleasant person. I cover up my emotions because I do not want to rain on someones day.
EVERYDAY, my sweet little lady wakes up gagging/ crying. It breaks my heart knowing she is in pain and no one can figure out why. After we get through the morning spell, we hop in the car and head to therapy. Car rides have now became just as bad as the morning time. She gags and turns blue like she can barely catch her breath. I stay stressed the entire time because I am trying to drive while my daughter is having trouble. We have done a couple different tests and spoke with a couple different doctors. So far we do not have any answers.
We face many doctors and are told many different things. While Talynn has been having some issues these couple months we go to appointments and are told some things you really do not want to be told. I have been told that “there is no need for Talynn to be seen by endocrinology anymore unless she develops thyroid issues or if she reaches the age of puperty which as we know is unlikely” . I have researched everything I can find on Bohring-Opitz Syndrome and I am not the type that lives in denial, so yes I know what the average life expectancy is however I do NOT need someone reminding me of this. I need doctors to worry about the present and HELP my child.
I know this is all over the place (but this is how my brain works now)… I think of children who have lost their mother at such a young age, I see children whose cancer has came back, I see people who are trying to have children and cannot, I see moms who are not getting sleep due to a newborn, I see children who have reflux issues… All I can think is that no matter how big or small it maybe, it is still a struggle everyday for each of us and at the end of the day we all have one prayer… “God I know you have a plan for us, so please help us through these hard times.“
Mommy of BOS ❤