A HUGE wake up call.

Yesterday, we heard very sad and upsetting news. A young lady who had achondroplasia passed aways in her sleep. She had led a parent discussion group at the last LPA regional conference we attended. I must admit I did not know her personally but her passing is very upsetting to me. I can't get it out of my head.

For me, this was a huge wake up call and reminded me that Anaïs is not "just short". It is not as simple as that. She does have increased health problems/risks, she does have sleep apnea and she does need us to do everything we can to keep her safe. It is our #1 job and responsibility as parents. When you have a child with special needs, part of you tends to "forget" about all these things and we just get busy "living our lives". I think to a certain point we have to because if we keep thinking about the "what ifs" on a daily basis we would drive ourselves crazy and I know I would start living in panic mode. You just can't do that...you have to live your life and let your children live theirs. But what we CAN do is to do everything in our power to keep them safe and happy.

We know Anaïs is supposed to sleep with a CPAP machine because of her sleep apnea. We have had the machine for several months but until now we hadn't been successful in making her sleep with it. She would cry, pull it off and scream "NO" and I must admit that we stopped trying after a while and just told ourselves that it was too hard and impossible to have her keep it on at her age. With the tragic passing of Erin, I realized that this is not an option...she just HAS to wear it no matter how hard the fight. So tonight we tried again after several months and to our surprise she did good. At first she said "no" and cried but this time we didn't take it off. Jeff held her and reassured her telling her it would help her sleep better. He always knows how to reassure her and calm her down , he seems to know how to do that with all of us.
Then we put her in bed with her baby doll and favorite books and stayed with her for a bit and she listened to us when we told her she would be ok...ten minutes later she was asleep.
Tomorrow we do it again, and the next day and the next day... We do it because we owe it her and because she deserves us to fight for her. I think we're on the right track...
My sweet little girl...we love you so much.