Recent Megan update

I have wanted to sit down and write an update for a while now but it seems as though every time I do something comes up. We have had so much going on lately. First, for those of you who don’t know, we were able to get my dad moved 2 weeks ago into an assisted living home that mainly deals with Alzheimer’s so that was such a HUGE blessing. It is such a huge weight lifted off, you know? Just knowing he is in a safe place and well taken care of is so awesome! He seems to like it for the most part.

Now on to Megan. She had been doing pretty well for the most part. She has had her rough days here and there but not too much drama which is just the way we like it. She is still really enjoying her wheelchair. What is so cute and very smart is when she is having a few minutes off and gets too tired she will actually go to her chair and pat the seat to let you know she needs to rest! I tell you, she is a genius! She had a little bit of a rough start with physical therapy last week as she basically fell asleep before we could even start. But once she got a little rest she was ok and was able to complete therapy. She had been doing a lot of walking on her tip toes when she did not have her new braces. Her PT said that was usually sensory related, which Megan has a lot of issues with anyways. Fortunately she has her new braces now and it makes it almost impossible for her to walk that way. We became very concerned about Megan on Friday night. She woke up very upset and was having trouble breathing. See, Jimmie and I had been sick and so Jim and I were afraid she might have caught it, which would have been terrible. She finally threw up and then actually seemed to feel a little better. We don’t want to see her throw up but we think she had some congestion stuck in her tummy and throat so it was better that she got that out. We are both praying so very hard that she does not catch what has been going around our house. She kind of seems to be on the edge of catching something. Praise God nothing has come of it though. Friday we received some test results from when we went to her Mito doctor back in September. Basically they were checking her levels to see if they had improved or if any other issues had come up. It pretty much came back saying not only had nothing really improved but there were a few of them that had become worse. I was going over some of it with Megan’s nurse this morning and she really helped me understand the results and how important it is that she really stays on top of Megan’s issues even what we think might be small ones, because they may end up becoming very big problems. One major area that came back with extremely high levels was concerning her heart. Her nurse is very concerned about this, as was her mito doc so she is going to be extra cautious with Megan in that area. With that said, Megan will be going to her doctor in a month to get a check-up and then referred to a cardiologist. This is something that we have to have done anyways because of her disease but especially with the latest information.

You know, when we found out about the test results, it was almost like finding out she had been diagnosed with Mito disease all over again for the first time. I think it hurt worse, you know? Mainly because she seemed to be looking so good. But that is the scary thing about Mito disease. You can’t always see it on the outside. I asked Jim if it was silly to have thought that maybe they would come back to us and say they were so sorry, they had made a mistake and they have no idea what happened but all of Megan’s levels were totally normal. Honestly, I really thought that! But it didn’t happen. In fact it not only reiterated that she has Mitochondrial disease but it also showed that it has progressed. (SIGH) Now, I am just going to be kind of blunt here and just tell you that it stinks! It really does, no kidding! I was so upset because I wanted so bad to be able to get used to this. But you never get used to test results that aren’t good. You never get used to new specialists, even though you were pretty sure you were seeing all the doctors they had out there. And you certainly NEVER get used to the incredibly hard possibility that you may lose your child. See, you think that Megan is doing some what good but this disease is so awful that on the inside things are getting worse and you don’t even know it!

Now, having said all that, here is the best part of this journey. Two weeks ago I had a very amazing opportunity. My sister-in-law, Lindsey, had been having a rough time. She told me that she felt like she was missing something in her life. She just couldn’t take it anymore. She was tired of living this way. Things were getting totally out of control and no matter how many times she had tried to fix it, things would just go back to the way they were. She said that she had been reading Megan’s care page and updates for a while and she would go back and read them whenever things just got too much. Well, you and I both know that is ALL GOD! I asked her to give me a call so we would talk. Before she called I prayed. I asked God to remove “me” from this situation and let His words speak and not mine. I prayed to be His servant and to please use me. When she called we talked for a very long time. I shared my testimony and some of Jim’s and was able to share just how God has worked in our lives. She asked how we were able to go through everything with Megan and still be able to smile and basically get up every day. Of course my answer was Christ. Not me, Jim, or Megan, it is all Christ! To make a long story short, right there on the phone we prayed together and Lindsey accepted Christ as her personal Lord and Savior! Words cannot even express how excited Jim and I are. One thing Lindsey said to me before we prayed together was “You mean that Jesus can wipe away all the bad stuff I have done?” and my response “You better believe it, only He can do it! He was knocking on your heart! This emptiness and knowing that things aren’t right and realizing that you can’t fix things on your own. That is all HIM! Does that mean that you will never have to think of the person you used to be, no it doesn’t. And believe it or not you don’t want to. Like the song says, Heal the wound but leave the scar. I never want to forget where God brought me from and His mercifulness.” Isn’t it so amazing. God is such a patient God. He was just sitting there waiting for her to answer His call. I am so thankful that she answered and I am so humbled and honored that He used me to be a part of something so amazing. So, no some days are not easy. BUT we all know this is God’s plan and this is His will for Megan and our family. He took Megan’s journey and worked on Lindsey’s heart and now she is not only my sister-in-law but my sister in Christ forever. Having the choice, would this be how we would have wanted Megan’s life to be? Probably not BUT God is using Megan and we have known that from the beginning. Would we change a thing, ABSOLUTELY NOT! You see we have both felt that God’s will is what we want. If only 1 person comes to know Him through this difficult journey, man, what an honor it is to be His servant! So while hearing news like we did recently is not easy, we know we are serving God’s will and we are honored to do so. Lord, continue to use us for Your will. Mold us for your use. You are the potter and we are the clay. We praise and honor You! Amen.

I know we have some of the best family and friends so I am going to as a favor of you all. Lindsey is really excited about learning more about our Father. I pray that if you guys find it in your heart and feel God is moving you to do so, please leave an encouraging pray and or comment on Megan’s blog for Lindsey so she can read them. I know that would really bless her so much. Thank you guys for reading such a long blog. God Bless you all so much!!!

JR