“A wait and see kind of thing…”
I would be a one rich gal if I had a dollar for every time I have heard this statement over the past 22 months.
In case you need a quick refresher.. Here is where we last left off…
That was 9 weeks ago. In these last 9 weeks we have seen 8 doctors (that i can recall off the top of my head, I may be leaving some out) we’ve been to 3 clinics and had many 2nd and 3rd opinions. I feel like we are to a point now where I can better explain where we are and where we are going. So, without dragging on every detail (there are a lot of them) I am going to do my best to catch you up.
In a nutshell this should sum up my sweet Dixie.
Dixie has been diagnosed with an “unnamed” neurological (brain) disorder. We know that this neurological disorder is central not peripheral. This means it is stemming in the Central Nervous System. We have been told if you have a neurological disorder that this is the system you want it to be in. Plus side to having an “unnamed neurological disorder” is this means she does not have some horrible brain disease or disorder (like one already out there and named) Downside.. We don’t know what this disorder will look like in the future (a wait and see kind of thing <— see.. There it is). So, what does this neurological disorder mean for us? Well, right now it is affecting Dixie's muscles. If you were to see her chart it would say something like this.. Neurological disorder stemming in the central nervous system causing muscular weakness. The specific issues we are dealing with are vocal cord paresis (reason why she aspirates and has to be fed through a feeding tube), it is currently affecting the muscles in her eyes as well (reason for glasses), and it is also affecting her legs, specifically "left side weakness" (reason for extensive physical therapy and orthotics in her shoes). Secondary affects to the main problem are that her lungs are slowly being damaged (due to her vocal folds being weak and providing little to no protection to the trachea and lungs). We saw pulmonary 2 weeks ago and were relieved to find out (after an X-ray) that even with the severity of her aspiration that her lungs are appearing to fight this thing very well. There is some inflammation so we have started an inhaler twice a day to try to keep the inflammation at bay. The word "tracheotomy" has been thrown around multiple times but we aren't there yet (and may never be) and for that I am thankful. It will be a wait and see kind of thing (there we go again). Obviously our main concern while we "wait and see" is organ protection and at this moment in time we feel like we have everything under control with the measures we are able to take to keep her safe on a daily basis. So, there's that. We also still have a a diagnosis of an "unnamed" genetic disorder. Her chromosome test came back normal but we have every reason to believe that there is a mutation in one of the "normal" chromosomes somewhere. At this point there is no reason for us to go poking and prodding for a name for her genetic disorder because we are 99% sure it would only be that.. A name; and not change our course of action. We also still have the diagnosis of Raynaud's disease or phenomenon and severe dysphagia.
So, what does the future look like for her (and us)??? Well…. It's a wait and see kind of thing. Above everything else these brilliant doctors have told me, this has been the hardest statement for me. I have been so frustrated, sad, mad, confused and every other emotion that goes in between. Then, one day it hit me like a ton of bricks. Do you know what tomorrow holds for you? Or is it a "wait and see kind of thing"?? If I were a betting woman I would say we all live every day not knowing what tomorrow may hold. In my times of frustration, sadness, anger and confusion I have to remember that even though we could have been given some big prognosis or course of action, life still happens and there is only ONE person who knows what the future holds for Dixie (and it isn't someone wearing a white jacket.)
Now, what will we do while we “wait and see”?! Good question.. Unfortunately Dixie is in a league of her own. Meaning, our team of doctors don’t have any other patients with these diagnosis’. All we can do is follow up follow up follow up. We are being watched VERY closely. We see some kind of doctor (ENT, cardiology, pulmonary, neurology, genetics) once a month. There are tests and procedures put in place to see if we are getting better or worse. So far, so good. There are decisions for Will and I to make along the way as well.. Dixie has and will continue to receive a good amount of radiation during these tests and it is up to will and I to weigh risk vs. reward on the timing of them etc. No one, even the doctors, really know what the effects of the radiation received will look like on grown up Dixie. But it is also the only way for us to judge her progress. Double edge sword. We will have the GTube (feeding tube) for as long as the eye can see right now. I did my math the other day and If everything went perfect it could be until at least 8-10 years of age. So I’m calling that “as far as the eye can see”. We will also continue in therapy (we are currently 4 days a week).
Obviously our prayer is for complete healing. And now that we know there are no medical procedures to “fix” our baby, I don’t think praying for complete healing is that far fetched. It’s a “wait and see kind of thing” remember. Crazier things have happened.
On another note that I don’t think I have touched on.. Even though Dixie has a brain and genetic disorder, somehow by the grace of God she is cognitively NORMAL. This one, really throws the doctors for a loop. But, we just smile! We’ve never had any doubt in our mind that she could defy the odds. She really is, one of a kind.
So, how has life changed for us as parents or a family with a “special needs” child. I feel like EVERYTHING has changed yet things remain the same in so many ways. Our life is VERY scheduled… It’s like having a never ending newborn as far as feeding is concerned. We live life in 4 hour increments.
People stare… A lot. I pray that we teach Dixie and others that we are not defined by our differences instead we celebrate them. I don’t mind talking about our story. Just ask me. I’m not fragile. Protective, but not fragile. I don’t think any special needs mom is fragile. So talk to me, ask me about it.. You never know I may be needing to talk about it
Sometimes I feel very alone. Not in my home, home is a safe place.. Believe it or not the hospital and therapy is a safe place too. But in a world surrounded by “typical” children with “typical” parents that have “typical” problems, it can often get lonely. If only my biggest issue were goldfish vs. bunnies. However, I have some pretty awesome friends. I have been smothered in love by a group of amazing women that make me feel “typical” in every sense of the word. They embrace us, our schedule and our bag of medical supplies. They help distract while I feed in the most laughable places, they show up, they help with the boys and they never make me or Dixie feel like a burden and for this I am VERY thankful and humbled and blessed.
I’m tired. We have to watch Dixie like a hawk. I bet you never realized how easy it is for a toddler to access every open or unopened drink in the room in 2.5 seconds. Whew. Exhausting. With every cough we hear at night we jump straight up to make sure she isn’t choking. We try not to let fear overcome us while also being realistic and safe. We are tired, not sleepy…tired.
I could go on and on.. I found this article written by a special needs mother and if I were to change the “he’s” to “she’s” then it would be like she took the words right out of my mouth. I feel all of these things daily..
But, At the end of the day, my life and my problems are no bigger than yours. It’s all relative really.. We are all just doing the best we can in a world full of unknowns. I have SO much to be thankful for and I honestly can’t imagine what my life would be like any other way. I am the mother to an AMAZING little girl. Her strength and resilience at a mere almost 2 years old is inspiring. Her brothers, well, they are pretty awesome too. They are kind and gentle and patient. They are growing up in a circumstance beyond their control and yet they, like Dixie, amaze me every day. And that husband of mine, he isn’t to be left out. There is a reason God brought us together and this parenting journey we are on is one of them. He is the yin to my yang. He thinks of questions I don’t, he worries about things that I don’t and vice versa. He listens and he prays. God has given us one heck of a story to tell, I may never understand why this path was chosen for us. Though it is dark and confusing at times, I have honestly never been happier in my life. Our home is filled with love and we learn something every single day. That whole “don’t judge a book by its cover” saying has never felt more close to home. We are (or try to be) a little softer, kinder and more aware as we face this “typical” world together.
And you, my friends…. I honestly have no words. We have been shown so much grace throughout this past year. Each and every one of you reading this has surprised me beyond anything words could ever express. I will never be able to show enough gratitude. If anyone knows me you know I’m often burning the candle at both ends. I’m HORRIBLE at Thank You notes (it’s not something I’m proud of). But I hope if you didn’t “hear” one word of this update I hope that you “hear” this…
I see you. I feel you. I hear you. I am thankful
for you. I appreciate you and I love you. We know now this journey will be long and I am
grateful that you care.
Soooo… hopefully I was able to clarify a few unknowns for you, or at least fill in some
missing pieces. As always we hope that you will continue to send a little prayer up for us every now and then. We need them, we feel them.
You can donate to Dixie’s Medical Fund here.
P.S. Just like marriage and parenthood, unfortunately “special needs parenting” doesn’t come with a handbook. I have been so lucky to have people cross our paths with advice and knowledge. If you happen to be one of those people with any advice or resources that we should be utilizing etc.. please shoot me an email (email@example.com) There is SO much out there that I am just now learning or unaware of.