Let me start off by apologizing to the few that are following this blog. I guess I got a bit overwhelmed and it seemed that every time I tried to write, tears would block the screen. Jackie has been through so much in this past year, tests and doctors and more doctors, only it seems we never come away with any answers. Since I wrote last (over a month ago) Jackie has been braced for her scoliosis, diagnosed with Bertollotti syndrome and we have discovered that she has 4 bulging discs in her lower back. The doctors insist that they are not bad enough to cause the pain in her back and legs, mommy disagrees :). She has been treated with 2 different hormones for "menstrual" bleeding and then taken off of them after they didn't do anything. Now our primary doctor is sending us to a hemotologist to rule out a bleeding disorder (that is tomorrow.)
I requested a copy of our original brain MRI only to find out 4 years later that she has colpocephaly. This is a common disorder with ACC patients however the two do not always go together. I did not even know that she had it and we have been going to PT trying to stretch and loosen muscles that will probably never budge! Of course, we will continue PT if only to stay where we are at.
In the last 6 months, Jackie has progressively lost her energy. She explains the best that she can, that her legs "go numb" and she is "too tired" to play with her sisters outside or even go up the stairs sometimes. We have tried vitamins, protein, extra sleep at night, even naps during school. Nothing seems to make a difference. And once again, the doctors don't have any answers.
Our last neurologist appt 2 weeks ago, they told us that Jackie is suffering from "migraine variances" and at the onset we should give her advil.
That about does it for our recent medical issues, so sorry to seem negative but I wanted to get it out of the way :)
Despite Jackie's absolute exhaustion, we celebrated our angel and God's amazing grace as Jackie was inducted into the National Junior Honor Society last Wednesday evening at a candle ceremony where Jackie was one of only 4 8th grade students handpicked for this honor. (YES, WE ARE SO PROUD!)
That evening was a HUGE reminder to me and I hope it will be to you too, that just because a doctor may tell us that our child has a disorder, does not mean that they cannot reach for the stars and grasp at the moon. I know our story is a little different because Jackie was diagnosed at 10. I never treated her any differently than I do my other children and always pushed her even when others tried to discourage me and try to convince me that maybe Jackie just couldn't do it. We still don't treat her any differently, she has the same responsibilities and chores at home and we expect the same out of her at school as we do her sisters. Sure, it may take her much longer to accomplish the same thing my 11 yr old can do in 5 minutes, and maybe she doesn't do it the way that I might, or maybe she will walk downstairs and forget what I asked her to do. But at the end of the day she feels good about herself, and we know that teaching her again how to load the diswasher, or reminding her 5 times to feed the cat, will make her tomorrows just a wee bit easier.
So even though I may feel like I am banging my head up against a wall sometimes trying to get to the why of our latest medical mystery, I thank God at the end of every day for Jackie's latest accomplishment, another A on a test, an afternoon that she may go play outside with her sisters for 15 minutes, and most of all the amazing spirit that He blessed my angel with. That even on her worst day, she rarely gets angry, she knows that tomorrow is a brand new day and that no matter what mommy and daddy love her more than she can understand and that God is always with her, through every needle, every day that is a struggle, every time that she gets frustrated.
If you walk away with anything after reading this, if your child is 14 like Jackie or still growing inside your belly, please do not let anyone ever tell you that your angel cannot do something, instead, give them every means to try to do it and the encouragement to keep trying. There is nothing better in the world to us than when Jackie accomplishes something that she, and sometimes others, never thought she would be able to do!
Thank you for reading, and as always, please feel free to send me questions, comments, and anything in between. I pray that Jackie's story can bring hope to those of you that need it, encouragement for some that might doubt tomorrow and maybe answers to your latest medical mystery. I promise to write more often, maybe not better, but more often! God bless you and your angels!
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