Tag Archive for: Wolfram Mom

Move Forward and Keep Fighting the Fight

Barclay and I are moving forward! As parents you want to do everything possible to provide the best life for your children.
Raquel TV

Easier said than done when one of them has a life threatening disease.  If you pray hard enough for the strength to just move forward, somehow, the good Lord will provide!

This past weekend Barclay took Raquel to Best Buy and bought her a TV for her bedroom.  He mounted it on the wall next to her bed and with it’s swinging arm,  she can move it right in front of her face.  It has been at least nine months since she has watched TV.  After her dad installed it, her eyes light up and she was so excited to sit and enjoy the TV like everyone else.  She just wants to be like everyone else.

This week I  had a meeting at school with about 12 other individuals from Raquel’s school to discuss her progress. It was a bit overwhelming to walk into a conference room and see all these people sitting around a huge conference table to discuss the needs of you child.  I am very grateful that Raquel attends such a great school district and I am even more grateful that Barclay and I are accepting the fact that Raquel has special needs.  Her needs keep us fighting; fighting for change, and fighting for a CURE!

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You’ve Got To Have Hope

Jack GebelLast Saturday was my 7-year old son Jack’s first football game.

The whole family went, including my brother J.T.’s 16-yr old son Shane who was visiting from San Francisco. We were all excited to go and watch these miniature NFL athletes. Raquel said to me, “mom why do I have to go, I can’t even see anything. Please let me stay home and I will play on my Ipad.” It was the first time that I noticed that for the last year I had been enabling this kind of behavior. I was not putting my foot down, telling her that she needs to get outside, enjoy everything around her, even if she can only hear the sounds, it is still worth it! A little tough love was thrown her way and she ended up going.

That event brought me to today. I had to make numerous calls to Raquel’s low vision specialists and vision rehabilitation services at her school, calls that a parent does not want to make. Raquel’s eyesight has dropped 3 lines in the last 6 months. One of her teachers even told me on the phone today, “I waved to Raquel and she didn’t wave back and she was not that far from me. Has her vision gotten worse?” It is the beginning of school and as a mom the only calls you want to make are simple ones: “Hey I need to pick Raquel up at back pick up, or what time do I need to volunteer”, not calls like “we need to discuss how my child is going to adapt in her classroom because she can’t see farther than 8 feet in front of her.” As I sit and write this blog, tears fill my eyes and my heart sinks to the pit of my stomach. My child is going blind and there is not a damn thing I can do about it (at least not in the present moment). I want to feel sorry for myself that my child is not like everyone else. This situation stinks and I want to go bury my head in a pillow and cry and cry until I can’t cry anymore. But then, I get that little nudge inside, whether it is God, my parents or my angel telling me, “don’t give up, make due in the moment and fight like hell for this child”, and that is exactly what I am going to do. I may have tears now, but I have hope. Hope that the Snow foundation will make a difference in Raquel’s life and the lives of other children that have to endure these hardships and that hope my friends, is what keeps me going.

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