Tonight, while I was holding Noah, he made a huge pouty cry face and held it for a good 10 seconds! The nurse saw it and couldn’t believe it. It looked like he was crying…and though I’m sad that he was sad, it was a good facial expression because he hasn’t made them in a long time.
Anyway, I need to retract my statement about Eve…On the way home last night I actually found myself feeling sorry for her. I realized that she and Adam were the first parents on earth to lose a child, and though Noah is still with us, the pain is there and I can somewhat understand. Imagine the utter pain of leaving God’s physical presence where life was bliss, learning how to live on your own, starting a family, falling in love with two boys, and then one goes and kills the other. No, I won’t give her an earful because she’s been getting that for thousands of years, I suspect, or at least threats of it. Maybe I’ll even give her a hug…
Anyway, Jason’s been contacting doctors at the Mayo, Kennedy Krieger at Johns Hopkins, Duke, and the University of Minnesota to start for further opinions and direction for testing. Some insight has been sent back and so we’ll run some more tests this upcoming week. We are searching in lysosomal storage disorders, and peroxisomal and mitochondrial disorders, just for a start. These are all cellular disfunctions. We know he doesn’t have many of these, but we don’t know if every one has been screened.
Today Em and I decorated her Christmas tree and the house a little. We’re going to get Noah his own little tree for room 313 so he can experience the holiday cheer. Obviously a tree isn’t the meaning of Christmas, we’ll tell him what it’s all about, but it’s his first Christmas and we want it to be extra special. I only want one thing for Christmas this year…
…and I’m praying you get that one thing you want for Christmas.
Hugs and prayers for all of you.
i’ve read and lurked here for months. i’ve sat and wept before our saviour on your behalf. i know that God provides the grace you need for the moment, but i want you to know that my family is daily lifting yours up.
as a mother of three little boys, i ache that you are experiencing what you are- yet rejoicing with you at the growth you have found.
thanks for sharing all the layers of emotion… we will continue to pray.
May you be blessed beyond you can imagine this Christmas. The Joy you have in the Lord is a gift in iteslf. I continue to pray for you and your fam! Keep up those expressions Noah! Love Steph
Adrienne, I came across your posting because of a mitochondrial news alert I have on my computer. I just wanted to let you know that there are some really great organizations out there to help cope, understand and have hope. One is called the Mitochondrial Disease Action Committee http://www.mitoaction.org; another is the United Mitochondrial Disease Foundation http://www.umdf.org; yet another is the Muscular Dystrophy Association of America http://www.mda.org. Also, very importantly, you can go to the firstname.lastname@example.org to get insight from other parents. This is extremely helpful for us. How is little Noah doing? There are great docs available to help as well. I can speak w/you more further if you wish — you can post a message for me at the mito@yahoogroups listserv. Good luck to you, Suz
GOD IS ABLE and more than capable to give you your heart desires. Rest in Him and Know that every need will be met according to his riches in glory. Phillipians 4:19
You and your family are remarkable and you can see the love and grace that is on your lives. Keep the faith and always look up for your redemption draweth nigh.
God Bless you and Your Family