Gracie had her MRI today. She did well going under and waking up. After recovery, we had time to get everyone lunch before heading to the last two appointments for the day. Madi stayed with Grammy (Ricky's grandmother) so it was all of us minus her. She really needs to be active and these appointments are very long and boring so it made it much easier to have her off and occupied. We got to PM&R and she wants both kids back in braces for their feet. Those braces might as well be a four letter word, we ALL hate them! She also wants Gracie to have her shoe built so her foot can fully touch the floor when she walks until she has her surgery done. Basically its a mini high heel but more like a wedge attached either outside or inside her shoe. She will hate this because it's going to make her so different. She notices all of those types of things :(
We did get really great news while we were in the appointment, the MRI results were posted in her file and her spine is NOT tethered and she will NOT need surgery on her spine as of now. This is the best news we could have received today.
We did get the name of the syndrome she has and after looking that up tonight, I am thankful it isn't a really bad case she has but I'm also just sad for her. Certain things I hoped she would grow out of doesn't seem to be the case for her. I am happy to know that she doesn't have any form of down syndrome even a slight bit and the "abnormalities" I've always wondered about in her nose and eyes are apart of the syndrome. It's so strange that we have 4 kids and only 1 is affected by a genetic disorder that either Ricky or I carry and that neither of us have any of the symptoms. It all makes sense now with all the orthopedic issues. Like I said, after researching, I am thankful it's only this bad. I guess the most devastating part I feel for her is just the normal things of growing up... being a kid, wanting to be accepted, etc. I know how cruel this world can be and I also know that in reality, I cannot save her or protect her from everything BUT I will do everything in my power to do so. I worry about her confidence being physically unable to keep up with her peers and as she gets older, her confidence in her appearance- just looking different. And of course I think about her as an adult and I just really hope she can find love and someone accepting. I know I'm jumping the gun thinking all those years ahead but I always worry for her and Brody as adults. I always have. I know that she is a very special little girl and not just because she is mine. I know that she has a big purpose in this world. God spared her life here on earth for a good reason. I hope that her God given smile never leaves her face. I pray she finds a good group of friends throughout her schooling that love her just for being Gracie. I just hope and pray about a lot of different things when it comes to her. She is such an old soul. I love that little beauty queen.
I turn 28 in a couple weeks. It's been a really hard 10 years. I feel so old. Not age wise but just life experiences. I often wonder what it'd be like to just live carefree. To not have my mind racing a million different thoughts 24/7. To be able to sleep at night. To not feel like I'm in a constant war for my kids. The absolute only times in 10 years I've been completely "free" is at the beach as stupid as that sounds. Being there no matter the length of time instantly lifts every worry from my shoulders. When I leave there is a great sadness and I load all our problems and worries back on my shoulders to carry on with my "work". The past four years have been the hardest in my entire life and the hardest most challenging and rewarding job I'll ever have. It's a lot. Ricky and I have been through a great deal. I wish I could accurately put it into words. It's like constantly being on high speed ahead. Never any downtime and I don't mean because we have four kids but feeling like your fighting for your life nonstop times 5. It feels like you are fighting to not drown. And then there are the huge goals I set for myself and those around me. It's a lot but I know and I mean I really know this little family of ours is destine for greatness. This is our life for a reason. If nothing else, in about 20 years, Ricky and I will have lots of money from the years of mastering budgeting with four kids and we'll vacation for weeks at a time on all those beautiful tropical beaches. We'll occasionally come home to Ricky's ranch where he can play farmer. Until then, let's hope we find our dream home or land today (we are looking all day).
KP
