Praying for the BIG miracle

I have been thinking about this post since Thursday, Reed has been unofficially diagnosed with Vanishing White Matter Leukodystrophy.  They were not able to officially diagnose him with VWM because Reed's case is still inconclusive. They were able to find one gene in Reed's DNA that had a mutated recessive gene but not a second mutated gene you have to have two mutated genes in-order for it to be a disease so after further testing they found a different gene that has a mutated recessive gene.  So in Reed's case he is the only patient that they know of that has been "diagnosed" with VWM Leukodystrophy that doesn't have two mutations in one gene.  (hard to explain and understand and I am sure there is more to it then i understood)  The doctor said that because of the FDA and the test that are available that was really all the further we could get with Reed's case.  He said that there are different regulations in Europe and that the world specialist was in Belgium and if they choose to they could ask for Reed's DNA and try and zero in further but it would only be for research because there really isn't anything medical wise we can do.  He said it would only be helpful to know further information if we were planning to try and have more children because it would make the process of getting pregnant with a child that doesn't have the disease easier because they could remove the mutation.  He said that without the information there were other ways but knowing the information makes it easier, obviously at this time that is something that is not on our minds and we are focused on Reed and caring for him.  

So what is our next step well we don't have one, we live in the present, we care and love on Reed as much as we can we make sure he doesn't hit is head or get sick with a fever.  We show him as much of life as we can and we pray for that biggest doctor of them all to give Reed a miracle the Lord is the ultimate healer.  We go back to see the doctor in 4-6 months but really it is just a check to make sure nothing major has happened.  

I am struggling these past few days; struggling with not letting my brain get the best of me, struggling with living in the here and now and not the future, struggling with not being jealous of other families and kids Reed's age, struggling with the why, the what ifs, the this isn't fair.  I watch and see Reed so badly want to play with the kids and he does and tries so hard and I just want him to not struggle to be able to run and jump with the his friends.  These are all internal feelings, Reed is a very happy and strong boy who dives right at things and doesn't let anything stop him he pulls mommy and daddy right along with him when he wants to go somewhere but can't easily. So we live for today, for the joy of this day right here and we pray for tomorrow and what adventure comes with it.  We pray for a very slow progression of this disease and we pray for the ultimate BIG miracle.