Tuesday, July 31, 2007

DOCTOR'S VISIT

Sunday after church, Alex and I left for Birmingham. He had an appointment with a new doctor on Monday morning. We had a nice trip up. Had a fine supper at Cheesecake Factory....o.k., we had some dessert, too. We then stopped by Barnes and Noble to see what was new, bought some books and mags, and headed to our motel. We both were tired, so we climbed into bed and looked at our new books. Ian came over to visit when he got off work at 10:30, but he could only stay for a short while.

We got up in time to partake of the breakfast at the motel, then headed downtown to the Kirklin Clinic. Didn't have to wait long for the doctor. We both liked her very much. She read Alex's previous reports, and studied his MRI scans. She was very thorough and knowledgeable. Her finding were not much different from what we had been told before, however. She said basically what we had been told by other doctors. His disease is progressive and there is no treatment. She did , however, stress to Alex that he MUST get into an exercise program to strengthen his muscles and prevent them from atrophy, as well. She wants to do some follow up nerve conduction tests on his leg muscles as well as another MRI on the neck and spinal cord. Because there are several types of cerebellar atrophy, it would be of benefit
to us to know exactly which type he has. Then IF there is a breakthrough in research, we will know immediately if it would be appropriate for him. She had nothing to offer us in the way of help for his pain. She said that unfortunately, the pain goes along with some types of the disease. It is real and excruciating she says, but there is no treatment other than what we are already doing. They did a series of blood work while we were there, and we will get the other studies scheduled ASAP.

This is not the news that we were hoping to get. As far fetched as it seems, we hoped to hear that was some great new idea or treatment we had not tried yet. But, I guess we both really knew it was a long shot. This is a hateful disease, and it strikes as it wills. There is no rhyme or reason...it just is. She said that he has had it from birth. You know, that is scary, he had this disease for 12 years and we didn't even know it. Even though he started having migraines at age 4, we never dreamed it would escalate to this. I suppose it's good to be in the dark about some things. But, now that we know he has this, we want to know everything, and that is not possible. There are far greater and more learned minds than ours who study this area of the brain, and THEY don't even know. That, however, frustrates me even more. It's bad enough to watch someone you love suffer, but to not be able to understand and grasp the workings of this cruel thief is beyond despair.

I know that there is one who knows...and understands. God knows why He allowed Alex to carry this burden. And He, alone, knows the outcome. I know and trust in the wisdom of God. I know and trust that in this universe He created, he knows Alex by name and by heart. He holds his soul in His hands and He will give him the strength to deal with it. Because we believe that NOTHING can happen to us without God allowing it, we believe He has a purpose for Alex to fulfill on this earth. God has allowed Alex to have a brilliant mind in spite of the effects of the Cerebellar Atrophy. He expects Alex to use the gifts he has given him even though it may be harder to do than for the average man. However, we also believe that whatever task God gives us, He will equip us with all we need to carry it out. Now having said all that, it's only fair to say this, "IT IS NOT EASY!" It is so much easier to lay in bed and try to sleep and get away from it all...to let the world go by and not join in...to get angry that you have to deal with this. So I ask for your prayers, for this family. We want to help Alex in any way we can...but it comes down to him. He has to pull from his own strength and willpower to get through this trial. We can lend a hand, and offer support and encouragement...but it ultimately is his call. He is not angry, I do not want to give that impression. But he is not as forceful in fighting back as we would like. And it is probably not even fair for me to say that, because it is not me, and I can only try to understand how he feels. But, I love him with my whole heart and I want to best for him. And, I want the Father to look at him one day and say, "You did a good job, Alex." Which is what we should all strive for.

6 comments:

Musicaljean said...

Oh, Tonja, this just rips my heart out. What you experience with this dear son of yours and the attitude you have about it, in spite of the pain and frustration, just leaves me in complete amazement. For sure He will say to you one day, "Well done, daughter Tonja."

Dianne said...

I agree with Jean. I couldn't have said it any better myself.

justabeachkat said...

Tonja

I've literally been gone ALL day so I was happy when I returned home and I saw you had written a post. I was so hopeful that you and Alex had received good news. I'm so sorry the news wasn't any better than you've received before. It's easy to say "I understand your frustration" when in actuality there is no way to fully understand exactly what you've gone through. I just want you to know that I care, deeply, and will continue to pray for Alex and your family as you work through the issues of this terrible situation. This doctor might not have had the answers you were looking for, but in time, God may provide the answer through another source. This is what I pray.

Hugs to you sweet friend,
Kat

Lynne said...

It's so hard to deal with a child, whatever the age, who is hurting and you know you can't do any more to help. The depth of your faith amazes me. You, and your family, are incredible. Prayers are going out for all of you.

Iris Godfrey said...

Continuing to pray.

RealEstateGirl said...

There's nothing more to add to what our dear friends have already said, other than it makes my heart hurt!

Love and prayers your way, my friend.