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.
So, this was posted on another blog that I read. I just wanted to share it with you. I have never believed in abortion. . . ever. Once I had my amazingly perfect little boy almost 5 years ago, that belief depend. I can not believe that 90% of Downs babies are aborted. What? Because you strive for worldly perfection, you commit murder? I remember when I was pregnant with Carter and they wanted to do the Downs test. I was so upset and I told my doctor that I did not want it, that it didn't matter to me. That was the day I found out my doctor was pro-life. She looked at me and said, "jen, this will help us prepare for the future and your babies birth. . . not to end an imperfect babies life." I had the test. http://www.washingtonpost.com/wp-dyn/content/article/2008/09/09/AR2008090902519.html?referrer=emailarticleAs a side note, after we learned of Carter's dx, we decided we would probably not have anymore children. Not because they will most likely get the disease too but because we knew that we wanted to enjoy and embrace Carter as much as we could. I was telling a friend about our choice and her husband said, "well, can't you do genetic testing and if they have the disease, get an abortion?" Huh? Are you telling me that Carter is so imperfect in your eyes that his life should have been ended before it began. Needless to say, we are no longer friends. AND we are enjoying our little boy and our life to the fullest. We have an amazing life, an amazing child, an amazing marriage, and an amazing God who chose us for worldly imperfection. . .
No, I am not talking about a lipstick wearing soccer mom or even a lipstick wearing pig. . .
A few weeks ago me and my boys were enjoying our usual Starbucks when a woman approached me. She told me that she was trying to conduct a research study and asked me of I would be willing to participate. Even though I was a little annoyed because she was after all interrupting my latte and conversation, I took pity on her. I guess I felt a little sorry for her because I remember hours of hopelessly and helplessly asking people to please participate in my research study when I was in college. After all, my plan was to go on to to get my Master's in psychology. I became very involved in research so that I could officially have my name published in the APA journal before I finished my undergrad work. Long story short, I did a lot of research and subjected many people to my endless surveys. So, here I sat in Starbucks filling out her survey. It asked things about how much time you took getting yourself ready in the morning, how important it was to you to get ready for the day, etc. At the end, it asked for a phone number. Hmmmm? I should have known then however, still giving her benefit of the doubt, (maybe it was to contact me later for her study, right?) I gave it to her. By that evening, I started receiving phone calls from this lady who was not a psychology student but rather a Mary Kay consultant. I have been dodging this ladies calls for weeks and subjecting Scott by making him answer her calls. He finally told me the other night, I need to tell her I am not interested. So, Thursday morning, I am hanging out with my little man and the phone rings. What do you know, it's her!?! After listening to her little advertising jingle, I tell her I am not interested. O.K. so this lady has been calling me nonstop for weeks, she is not going to go away easily. I tell her, "no, I am not interested. I do not have the time either. I have a special needs son who requires all of my time." She says to me, "oh, I understand but you still need to wear makeup." Huh?!? I say, "you have a special needs child too?" "Well, no but I do have a child." I tell her, "come live a day in my life and then we can talk makeup." Guess what? she has not called back since;)
On to politics. So, I have a friend who actually reminds me a lot of me. She is very opinionated and very strong. We get along really well and she is becoming a great friend. However, she has one flaw, she happens to be an Obama fan. Hehehe. Seriously though she is just as passionate about Obama as I am about McCain and she knows how to have an educated debate. She makes sure to educate herself on the man that she thinks should be president (and the one she doesn't) and doesn't blindly say "we need a change" without even knowing what needs to be changed. We had a long debate about our views and why we like our candidate and we were able to see the other one's points. It was amazing to have a real conversation with someone who is educated about politics. After our discussion, I was so enlightened by our talk that I told some people about it and you know what, I heard some crazy stuff, all of which I agree.
There is a reason or actually multiple reasons that I will vote for McCain. Things that I am passionate about will steer my vote (mainly health care and abortion). This is how people should be voting. I am getting so tired of all these people my age ( I guess we are the new generation of voters or the young vote) saying "we need a change." Seriously? They don't even know what they are talking about. After talking with quite a few older people, I now know why so many people think young adults are dumb. . . mainly because we are! Don't tell people you "want a change" and that you should "Barrack the vote" when you don't even know the three branches of government. Do you even know who the vice president is? Speaker of the house? Seriously, do you know the parts of government? Do you know that not one man (the president) is responsible for everything that goes on? Do you know that we have a little thing called congress and everything has to go through them? The president is NOT the end all say all. Of course we need a change. By law we have to have a change. Bush can't stay in office any longer. He has served his time and has gotten a lot accomplished. In light of 9/11, think about this, in seven years, have we had another terrorist attack? Obviously, our government is doing something.
Whether you like Obama or McCain is a personal decision. But don't walk around campaigning for someone when you don't even know the basics about the government. Figure out what is important to you and to your beliefs and vote accordingly. I have more respect for my Obama loving friend than I ever have because I know that she will vote because she is informed and has made her decision according to her passions. I will even still be seen in public with her even if she does keep wearing her Obama button. . .
So, as I sit here typing, I am wondering why. This has been something I have been thinking about doing for quite a while now. Mostly, because I have a lot to say but also because sometimes I feel lost in my world. You know how you always picture your life going a certain way. . . well I did that once. I knew since I was little what my "calling" was. I was going to grow up and be a mommy. I knew in high school the man that I was going to marry. I knew we would have four kids, I would raise them and when they went off to school I would go back to volunteering for something I was passionate about before I had them (like when I was in college).
Well, here I am seven years in to marriage with the most perfect man I could have ever married. Yes, I married my high school sweetheart and he is the love of my life. He is definitely the man that God created uniquely and specially for me. So, check one on the score board. I have fulfilled my calling of being a mommy. I have an amazing, strong, smart, almost five year old who gives me strength and meaning everyday. So, put another point on the board. This is where it stops. . . I have one baby who actually does fulfill my life more than I could have ever imagined but as he has taught me, just when you think things are "supposed" to go one way, God reminds you that he is in the drivers seat of this crazy thing called life.
I recently told a friend of mine that I feel so lost sometimes because this was not supposed to be my life. What? I have an amazing husband, an amazing son, amazing friends and family, and ultimately an amazing life. However, I never in a million years dreamed that God would put me on a one way road taking care of a special needs child.
You see, almost five years ago, I had a beautiful, healthy, 8 lb. 12 oz. baby boy that was the picture of health. He was so beautiful. I looked at him and knew that he was my world and that he was absolutely a gift from God. He was the one especially chosen for me. So, anyway, on to the road of my life. . . for the first 10 hours, he was amazingly perfect. Because of a rough delivery, he had to spend a few days in the NICU but what the heck. Anyway, 10 hours into this wonderful thing called motherhood, I knew something was wrong with my baby who was violently projectile vomiting across the NICU. And so it started. . . this journey to get me to where I am today. My world is my son, Carter Andru.
I have blogged about his journey on his caringbridge web site for the past few years and will continue to do so but now, this is my turn. I am taking this small moment of selfishness. I need a place to share my personal battles in life and in being Carter's mom (but without being Carter's mom). Maybe I have become slightly jaded but I assure you, my faith has never wavered one bit. It irritates my when the "normal" mom's who have no understanding of a day in my life, say, "you know you are so special because God gave Carter to you and only you. He knew you could and would take care of him." Yeah, that is easy for you to say because you are not the one up at all hours of the night trying to help you half coherent child fight a fever because his body is literally attacking itself. You don't have to travel every two months half way around the country to get medical treatment for your child. You don't have to take on insurance companies, clean tubes, or worry about aspiration pneumonia. You don't have to wonder everyday if your son's body will eventually give up and allow cancer to grow. You don't have to worry about delays or mitochondrial disease.
However, all of that being said, I do not feel sorry for myself. I do feel extremely blessed because I get to wake of every morning to a beautiful little boy who is stronger than any other person I have ever known. I get to steal his kisses and hear his sweet little voice tell me he loves me. I get to go on this journey with him. So, I guess, in reality, this is not my life but our life.
