Well, the other day Dray turned 12. This has been bittersweet for me. I think a parent of any child, average or special needs, laments their baby growing up. Remembering the innocence of their childhood, how carefree they were, and how they just adored their mom and dad. BUT, for me it's more than that. Every year that goes by he understands more and more that he's different. He sees that other kids understand more, converse better, joke around in a different way, and can organize their life in such a way that they get praise from adults and peers for both simple accomplishments and also now for big accomplishments as well. He has been telling me how hard his life is because he had LKS as a child. He tells me that everyone thinks he is bad and he is always in trouble. When I hear him say that I feel awful, because I feel like I don't give him a break. I need to be more loving, accepting, and lenient of his weaknesses. I probably could learn to do that better and I strongly believe in reevaluating and trying to see myself objectively. I want to change, evolve, and do better. But, there is always that side of me that feels that I should not let him make excuses for not being responsible, respectful, and a hard worker. I feel strongly that he can try better to remember and stay on task and that I can demand that of him (within reason). I absolutely want to see him overcome and have faith that he can. Tonight I tried to have this conversation with him (one of many) and tried to keep the conversation concise, simple, and to the point. I left not feeling confident that he understood, or felt any drive to do better. I was frustrated. I picked up my phone and saw a new email from a mother of a daughter, in the beginnings of this scary disease, and she poured her heart out about her sweet little girl. She told me she had read this blog and appreciated the truth and the hope that it brought her. But, she also told me about sitting over her little girl at night and crying and praying that she would be ok. Now...these nights I remember, because I had many of these sleepless nights of tears and prayers for my little boy. This email brought me to tears because it brought many overflowing emotions of remembering those scary beginnings, remembering the worst part of it all - the unknown of any outcomes, and also bringing me back to this moment right now and the reality of it. That I have a 12 year old boy that has had a very scary diagnosis, and here he is alive, healthy, loving, active, learning, growing, speaking to me, and a beautiful part of my life. I need to be more thankful to be where I am and I will always try my very best to remember all of those mothers and fathers who are in the scary beginnings, the unknown territory with no answers yet, and those who's children haven't had such a great outcome. They are the reason I write and have put all of these things we have experienced out there for everyone to see, good and bad.
So, I hope I have done that!! In the end...we love these children with all of our heart and soul. They are precious. Just a last few updates on what we are doing righy now - as an end to this post ;) Dray still needs speech therapy to help him understand sarcasm and story telling/comprehension, and following conversations. He takes Ritalin for ADHD. Judge if you will, but we must as parents make tough choices. I talked to as many doctors as I could to make the best decision possible. Dray's neurologist, several pediatricians, and his speech pathologist have all told me that it is in his best interest to have him be able to focus, not stick out in class, have less frustration from him, his classmates, and teachers. So...there it is! We have started in on school classes for next year on navigating 6th grade and learning to socialize better. Also, he has 2 hours of tutoring Monday-Friday. I always hope I'm doing enough to help him...it never feels like I can give him enough!!