Tuesday, November 24, 2009

Days Like This

This is the title to one of my favorite Van Morrision songs and describes my life in a nutshell recently. Except in my case it would be minutes or hours or days like this. I must admit that I have been on quite the emotional roller coaster since our eye appointment last Friday. One minute I am in the pits of despair imagining the worst and then he will look at me or track a toy and I will be rocketed to the highest of highs only to find myself in a free fall a minute later when he then acts like I am a ghost. For instance, today I came home from lunch crying because I was just so overwhelmed by everything and when I got home my mom was holding Perron and he was so precious and interacting so well and my worries momentarily went away. I just wish that one of the hallmarks of CVI was not that their vision appeared transient....one minute fine,the next minute gone. It is torture trying to determine if he is making improvements and he is just progressing slowly or if it is just the in and out quality of CVI vision.

For those of you who do not know me, I am both a control freak and a knowledge seeker by nature. So my way of feeling in control of this situation is to try and learn as much as I can about CVI. I have read medical journal articles, I have read blogs, I have contacted vision therapists, I have reached out to special education professors who specialize in training teachers for the visually impaired, I have emailed mom's who have children who have this diagnosis. I have done everything I can to arm myself with knowledge. I have to be prepared if I am going to be able to advocate for the kind of care Perron needs. I truly believe that we have caught this early enough and that is brain is malleable enough that intervention at this stage is critical. Although we have to wait until December 23rd for the testing, I want to make sure that not one minute of that wait is wasted and that we are prepared to move if the diagnosis does turn out to be CVI.

Obviously I pray that I will never need all of this information I have accumulated. I pray that I can go back to only having to worry about the normal mom stuff. I will admit in my lowest moments my mind does wander to the what if's....what if he never is able to see.... what if he can't live on his own when he grows up...what if kids are mean to him because he is different.....but I quickly snap myself out of it. I can't focus my energy on that. Worrying about what if's like that will do me no good at this point...or ever for that matter. In my moments of weakness, I question God. Why has he made this journey so hard for us, what did we do to deserve this kind of heart ache, is he trying to tell us that we never should have had children in the first place. I have lived under constant stress for too long...the stress of infertility, the stress of a very difficult pregnancy, the stress of having Perron be premature and in the NICU, the stress of him being a difficult baby, and now the stress of being faced with a child with the potential of a life-long disability. However, I know that rather than question God, I have to trust. I have to trust that he is with us, walking this journey alongside us. I have to believe that he has plans for us that I might not understand right now. Trust that he has the ability to heal Perron and heal my hurting heart. I have said this before and I will say it again. I believe in miracles. God has proven that he listens to our prayers. I hold proof of that in my arms every day. I have to believe that he will listen to our prayers one more time and know that he alone can carry us through this dark time.

Like Van Morrision said, "I just have to remember there'll be days like this."

1 comment:

  1. Someone shared this verse with me when Blair was in the hospital, and your post just reminded me of it -- it's the "all circumstances" part that really touched me. Now, looking back on that two months, we are still thankful, because God blessed us and changed us so much through that time. I too see evidence of a miracle everyday and know that God is holding you in his hands!

    Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.
    I Thessalonians 5:16-18

    Lots of love and prayer for y'all!