Today I had a follow up post-partum appointment with my Doctor. It was at her old office by the hospital since she was on call (they have since moved locations) and the location brought back so many memories of being pregnant with Reagan. One of those very vivid memories is of me and Wes at a prenatal appointment and Wes asking the Doctor very bluntly what were the odds of our baby girl being born without any medical issues. He told her that you hear so much about the odds of down syndrome, birth defects, etc. But, what is the percentage of babies that are born completely healthy. The answer - 99%. The odds were in our favor, or so we thought.
I also remember being so nervous at the ultrasound when I was pregnant with Reagan and breathing a sigh of relief when there were no markers for Down Syndrome and that she had all 10 fingers and toes. I had it in my head that those were the worst things that could happen. I was even more relieved because I knew that I was not the kind, patient woman that could be the Mom of a child with a disability. I have always been amazed at those Moms and marveled at their strength. I now know that there are worse things...2 words, Rett Syndrome. As my husband describes them, they are the most awful words he has ever heard in his entire life.
Here we are 2 years later and trying to find the meaning of the diagnosis and why our beautiful little girl has to face these daily struggles. It must be so difficult for her to want to tell her parents want she wants or needs but to be unable to vocalize it; to love walking around outside and feel the wind blowing in her hair but get frustrated when she falls often; to not be able to control her hand movements enough so that she can play with the toys that she once loved.
But, in the end I must remember that there are definitely worse things that happen every day to children and that every day must be lived to the fullest because we don't know what will happen tomorrow.
Abby's first visit to Boston for the IGF-1 Trial
9 years ago
Well, I've been behind on checking the blog so I made a mass catchup today ~ yes I should be working instead of crying in my coffee...but so be it!
ReplyDeleteI mentioned to Jeremy how I felt like You & Wes were given a raw deal when we first heard the diagnosis. You finding Keith (your Dad) later in life & Wes losing both of his parents too soon... Jeremy's response, that I think of often, "God was preparing them to deal with this (Rett Syndrome)."
Jeremy has a cousin with a special needs child ~ they have never received the official diagnosis but we see "Emily (6)" frequently when we go home to visit family and continuously hear of her strides forward. His cousin survived a car accident in high school that killed her sister, and her Dad died months prior to her giving birth to Emily... she is in therapy a few times a day, has learned to run when the Dr.'s noted she would never walk & she began crawling upside down like a crab. She spoke her first word this year "Momma" after years of silence ~ she was previously prepared to acquire skills to help them raise Emily & this month they were blessed with a 2nd child as well.
This story & yours has me thinking that ~ Yes, some people are capable of dealing with extremely difficult situations and maybe they are prepared as they go along the road of life. This post of you being pregnant with Reagan and ya'll asking soo many questions early on... to me it's a sign. I didn't ask any questions or take any special test and instead hoped & prayed for the best. I admire your strength!
I'm so excited Reagan has found a toy she enjoys & that the "Stay at Home" Mom is working out wonderfully with both girls...we all have rough days (hence, wine). I'm so happy that you are updating this blog on a regular basis ~ it may help a future parent as they learn of their daughter suffering with the same disease. Anytime you need something call... don't worry about putting us out or feeling guilty ~ anytime.
Hugs to you & the girls!! Hope ya'll have a great day.
~Gwendo~