Hmmm. . . What to write? I feel like I have a lot on my mind (imagine that) but here I am sitting here and nothing is coming out. I am on vacation . . . we are on vacation. I think this might be our first real vacation as a family. No doctors, no conferences, no procedures, nothing. Maybe that is why I am having a hard time writing. Things have been good lately though. This trip has been good for us. Carter has been so happy.
Today, I found myself dreading the thought of going back home on Saturday. Back to reality. I got Carter’s new crossover stroller/wheelchair ordered and it should be waiting for us when we get home. Tuesday starts on with our normal doctor’s appointments. I guess I can only hide so long.
We went to dinner tonight. We went to Dick’s Last Resort. If you have ever been there, you know how they treat you. Well, when we first walked in one of the guys looked at Carter and said “what, so you can talk? Then why do you have that thing in your mouth? (Referring to C’s pacifier). I actually told my son to lift up his shirt and tell the guy to leave him the hell alone. Yep. And he did it. And the guy looked shock. And they left him alone. Point taken. I do get so tired of adults especially looking at him weird or making comments about his pacifier or his stroller. Seriously. Do I look at them and question them about their vices? The fact that Carter needs a stroller cannot be changed. His pacifier however, is a different story. I figure, one day, he won’t want it anymore. Maybe when he goes on his first date! Really though I don’t understand why people care so much. Why are we so fast to judge others? Should we be looking at ourselves? Is it our job to judge others?
I am thinking that we need to leave the judging to our God. Romans 14:13 says, “let us not therefore judge one another anymore: but judge this rather, that no man put a stumbling block or an occasion to fall in his brother's way.” I have learned something through all of this with C. I have learned that you shouldn’t judge. You never know what is going on in someone’s life. You never know why they do what they do, why they make the decision they do, etc. I don’t understand why we have gotten to a place where we think it is acceptable to constantly criticize and judge people. Why can’t we just see people for their good? Why don’t people strive to help others, to support them, to care for them? I guess I could question this forever.
I guess I have rambled enough. We are good. I am good. Vacation has helped. I like being renewed. I will be ready to go back to reality ready to fight. For my son. For his right to be himself. For his right to not be judged.
In control. . .
I have been thinking a lot about control. Scott and I have also been having many discussions about what exactly that means. I FULLY believe God is in control. However, at what point does God allow our decisions to affect his control? Take something as our decision not to have another child. We learned last week that our decision has probably been a really good one. We are going to be going through genetic counseling in the fall to learn more about C and his diseases. Basically, we make genetically messy babiesJ So, all that being said, we would never say well, God is in control, if he wants us to have a baby we will, so we don’t need to worry about birth control. Right?!? But I also know that no matter what type of “protection” we use if God wants us to have another child, we will. During me talking and wrapping my brain around this, Scott says well, it is as simple as the man and the flood. You know that man stuck in the tree during rising waters, who has everything from a boat to a helicopter try to rescue him. When he dies he asks God, “why didn’t you save me?” God replies, “what more do you want, I sent you a boat, helicopter, etc.” Hmmmm. . Something to think about.
So, what it boils down to I suppose is God is in control and he also controlled our making and during that making, he gave us brains. He also, I believe, crated every person with a reason or a purpose. This weekend has been weird because we have been thinking about an amazing little boy that God created, whose life on this earth has been really short. However when I think of Matt, http://www.prayformatt.blogspot.com/, I see his purpose and I really believe that he has exceeded any expectation God had for him. I have been in ear shot twice of people I don’t even know talking about Baby Matt and his journey. I cannot believe that one little boy has touched so many. But then I do believe because that is what he was sent here for. How many people have learned about our Maker because of him? I suspect it is more than you would imagine.
This leads me to my next thought. . . (Yes, I am rambling but I haven’t had much sleep and I have been pondering a lot lately). I have started praying that Carter’s journey and my journey as his mommy will show people that God is in control and that He has a purpose for everyone. We were given a child who is sick but I don’t see that. I see that we were given God’s perfect child and we get to raise him in His glory. God is in control of our family and has led us every step. Yes, He also gave me a brain though to make decisions for him and to take care of him but He also has a hand in everything. And I also fully believe that Carter has a purpose. I pray that part of that purpose is to lead people to God. I see my amazing son and I think he can do anything and I pray that that means leading at least one person to his God.
So, it's been a while. . . well it seems like an eternity but really only a few months. Writing is my outlet but it is also the first step of me admitting the truth to myself. If I put it in writing, than it is true. If I have enough courage to write it in black and white then I have the courage to face whatever is going on. . . that I have the strength to accept all things good and bad, relishing in the fact that all things are controlled by MY sovereign and loving GOD. This is me trying to, I suppose, cope with the last few months. Carter as far as his EE has been progressing marvelously. . . better than any one expected. So, for this, I give thanks and believe me I am so thankful for the grace and healing of God. It seems however, that his journey may be leading us down yet another, unexpected road.
Tomorrow, we start down a new and different road. We begin the work up of diagnosing Carter with Mitochondrial disease. While I hear what the doctors are telling me, I don't listen. I see my child. He is amazingly perfect. I can't bring myself to a place where I can accept that he may have something that could take his life early. I get that he has ALL the symptoms. I get that when I read the description of Mito, they are describing my son. I suppose I have already come to terms with it in a sense but the reality will not hit me until I know for sure. Until I see it in black and white.
I talked to Dr. P 2 weeks ago, he says, "so far, I have not misdiagnosed even one child with Mito by looking at symptoms alone." Wow! Amazing! I am amazed by his abilities and thankful that parents have someone like him. He then says, "I think Carter needs to see a Neurologist." WAIT. . . I am one of those parents. But Carter has all of the symptoms except for mental delays. . . so maybe, just maybe, they are wrong. . . I will hold on to this hope no matter how small it may be. And I will push ahead. I will talk to the doctor tomorrow. I will listen and hear him. I probably won't believe him until I see a Doctor in Cincinnati but at least I am starting down the road.
It is amazing, people have always told me I am a natural care taker. . .I agree. I will do whatever it takes. The last five years, while, intense, have been "easy." I take what I get and deal with it. However, I have been able to hold tightly onto the fact that I will see my baby as a grandpa. What if that changes? What do I do? I already hear myself, and it scares me. . . "Scott maybe we should look for a one story house. . .something we can use a wheel chair in." "When Carter gets officially diagnosed, we need to think about moving to Ohio." "Maybe we should get a yard trampoline, to help Carter's muscles." I don't like that I have to go there. I don't like what this all encompassing disease has done to my son. I don't like that so many EOS families have to deal with Mito everyday. This is not just a "food disease". . . this is a whole body disease.
We just had Carter's ISP meeting. I know I was there. . .it was at my kitchen table but at times I felt like they were talking about a different child. How to get oxygen in, when is it time for a full wheel chair (not just the special needs stroller we are using now), how much in home nursing care does he need. . . Is this my child? Is this my life?
At the end of the day, I have to realize that it is. I can honestly say that I wake up thanking God every day and go to bed thanking him too. I know and am comforted in the fact that he is in control. I feel amazingly blessed that for some reason, I was given Carter. I will not wish for something different I am just scared. My mind goes places that I don't want it to but it is reality. So, I guess, I will deal with it.
