Megan update and a diagnosis

Good evening everyone. I pray this Holiday week has you being so very Thankful for all your wonderful blessings. I am going to just go ahead and warn you that this one might be a tad long. Our family is facing something pretty difficult right now. When Megan was in the hospital back in October a test came back showing signs of Mitochondrial Metabolic Disorder. Megan has every symptom basically so it pretty much explains everything. The bad thing is that it is not what you want to hear. I will be honest and tell you that I really don’t know how to write this email right now. I debated on sending one out right now but I know that we really need prayers. There are many things that go into this disorder. It ranges from severe to not as severe. It can affect their major organs. They can go from being fine to very sick, which she has done. It has to do with the chromosome that releases energy. It explains why she is so tired all the time. When they catch something it can seriously compromise their health. What’s tough is that they usually put kids on a special diet with protein in it and as you know Megan has an allergy to protein. It is kind of hard to explain everything through email though. When I first heard about it I was almost relieved because I knew what was causing all these problems. Now, I get less and less excited every time I think about it. Actually I get upset and nauseous but I am dealing with it. Most children do not have normal lives and some do not survive. The next step is to do a muscle biopsy on her to make 100% sure and to find out how severe it is. The problem is that originally they wanted to wait until she was a year old to do this test. However, they might move it closer. She has to go to the neurologist on the 5th of December and will talk more about it then.

I would just like to share a little insight with you guys on Megan. Most of you know that we have two boys, Jimmie and Ian-Thomas. After we had Ian we were both pretty set on just having our two boys. I never had a sister so I didn’t really feel the need to have a little girl. I think I was almost relieved when I found out Ian was another boy. Anyways, it was Christmas of 2004 and we were at my parents house Christmas Eve. My mom and I stayed up really late that night making food and most importantly sampling the food we were making. We had such a blast. I remember thinking that night how nice it would be to have a daughter to share that with. It was then that I just couldn’t get that desire out of my heart. A desire that I had really never had before. This feeling just wouldn’t go away either. You see, to me, my mom is the most wonderful woman I know. What a neat, caring, loving and beautiful woman inside and out. I thought if I could have a daughter that would love me even half as much as I love my mom then I would be the happiest woman in the world. A little girl to share the things that only my mom and I can share. I prayed for a little girl so much. I asked God if it was His will to please give me a little girl and if not then to take that feeling away from me. Well, when we found out that Megan was a girl, I was almost scared. I was afraid all of a sudden that I wouldn’t be able to take care of her like I did the boys. What if I was a disappointment to her? Well we may not be perfect parents but by golly this little girl is loved more than you can imagine. To hear news like this, well it is heart breaking. Yes, we are both scared. Does this make me any less faithful? Nope. In fact it strengthens my faith. See, in order to make it through right now, we are really going to have to turn every single thing over to God to get us through this time. The possibility of losing Megan is something that I can’t and won’t accept right now. Have you ever heard the saying “You have nothing to worry about until you have something to worry about” or something like that. That is what we are going to be dealing with for a while. What I am praying is that they are going to come to us and say they are so sorry and they have made a mistake. I would give anything to go back to not knowing what is wrong with her. It was then that I could say that this was just a phase and maybe she would grow out of that. If indeed this is what she has without a shadow of a doubt, then that won’t be able to happen. However, Jim and I will continue to do everything we can no matter what to take care of her and most importantly love her. I don’t really know what else to say at this point. But no matter what we will praise God! I really do believe that God is going to show himself through all of this and we are going to be amazed. I don’t know how but I believe it is going to be incredible! God is still working in all of this and although we are having to deal with some pretty scary stuff right now, I know He is right by our side. And we will be right by her side. We have held her down every time she has had to have her skin burned off, blood taken, shots given, tubes replaced, tests run and doctors looking at her, whispered in her ear to sing or tell her everything is ok, caught her tears, caught her throw up, raced to her to help her when she is choking and when everything is good just held her, looked at her, smiled and said I love you. Watched her crawl, smile, laugh and play with the boys. None of this will change. What ever it takes and only by God still be able to sit back and say everything is great and just enjoy her no matter what. That is the great thing about God. He can take your burdens and all the bad stuff and just help you focus on the wonderful things to be thankful for. You know with this disorder a lot of babies die within the first few days to months. I would like to tell everyone that Megan is now almost 9 months old! By the grace of God Megan is here and is 9 months old. How incredible is that? That is such a wonderful blessing! I never thought this is how having a little girl would be but as hard as these last nine months have been, they have been the best 9 months and I wouldn’t trade them for anything. God has blessed us with 3 amazing children. How awesome is that? I pray I never take that for granted. Please enjoy your Thanksgiving and just keep Megan and our family in your prayers. We love you all so very much! We will keep you guys updated as we know more. God Bless.