I pray daily that he will get better and that his life will be one of joy that he remembers. Not the rages, not the crying, not the teasing or the daily chaos and screaming because his shoes feel funny, or he can’t do a stunt on his scooter, or whatever the catastrophe for the day may be. I pray he will be a strong, independent, self sufficient, loving and caring person. I pray he will always know how much his mom and dad love and adore him, regardless of his tantrums and anger at times. I pray he will always know he can depend on us to help him, love him and do what is best for him.
Zack with sister before Prom
He is such a loving and caring child, so sensitive and loyal. He adores his sister, his family, his dogs and friends. I pray one day that person will come to stay and the demons will forever fade away. I pray that I will always be strong enough to support and help him, to be understanding when need be and tough when the times dictate. I admit I am scared, terrified of what his future may be. I am so afraid he will grow up sad, depressed, lonely, and self loathing despite our best efforts and despite any new treatment that may come along. I want so much for him, for both of my children to be happy people, to enjoy life and enjoy the gift that is life. I want to grow old with them and enjoy them as I have enjoyed growing up with my parents.
My heart hurts daily when I allow myself to think about what his future may be, and what I pray it will not be. I only hope with such early intervention he will have the best possible scenario living with his challenges.
I do not allow his problems to be an excuse for his behavior, for the mean, nasty and rotten things he can and does say. I do however believe it is an explanation, one some people may not believe or accept. I, on the other hand know who and what the real Zack is. He is a charming, bright, funny, charismatic, loving child who gets lost at times. He is my heart, my love, my life. He is a treasure and a blessing, regardless of any difficulties
We are so lucky. On days when I feel like maybe I am not strong enough to raise this child, and when it gets too stressful, I remember how fortunate we are. So many people have far worse circumstances, and huge obstacles to overcome.
My mother made a print for me that sits at my bedside that says it all so clearly for me. It reads:
No child is an accident, for every child is given to the mother God intended.
I do believe that.This child has made me such a better person, a stronger person, willing to stand up for truth and what is right, not backing down when I know something is wrong, being determined and persistent, never taking no for an answer and never giving up. I would not be this person I like if not for him.
2009 Update: Zack has been involved in a year-long Clinical trial with the National Institute of Mental Health for pediatric patients with OCD, who have been unresponsive to traditional meds, as he has. We were flown to their campus bi-monthly in Bethesda Maryland. This has proven remarkable for him it has not only helped his OCD but his depression and anxiety. I finally got him placement in the proper classroom setting called LD Neuroscience for kids with neurological disabilities at the end of the 2009 school year. After a long almost 3 year battle with the school district. This proved to be a great move for him and he was able to bring up all grades to A/B honor roll as well as regain some self-esteem and dignity. He has also been working closely with some great therapist that come to the home several times a week. He has more stable days than not,something I was not sure would ever happen for him, for us. There are still some rocky roads, chaos, unstable times, but they are not as frequent. God is good.
2010 update: Hillcrest High School for 1 (this is the second) years now, another bumpy, shall I say Mountains to climb. He has not been very stable, spent a lot of time home and taught at home as his functioning declined so while in school. As is the case with illness of the mind days are counted minute by minute.
2011: I can say now, after a very rough start to the 2010 school yr, we found a medication that is helping the real Zack shine once again. It is HUGE. School is not calling me daily. REALLY HUGE !! He feels good,”normal” he says for the first time ever. He has some goals in place, driving and spending as much time with the church as he can. Playing basketball on the church team and going on outings. Oh, and the launch of GoodBoyRoy last January, also such a wonderful way for him to show his Gift and talent. He has enjoyed seeing people wear his fun designs, the cool t-shirts for cool kids.
It has been wonderful to see his self-esteem slowly appear. So, we stay hopeful and optimistic in that he will have all his dreams come true (the “hot wife and 3 kids”) as he says, his own cartoon series and Good Boy Roy to be known world-wide. One thing will never change, the love we have for him, the courage he has, the wonders I know that know that await him, and that I will never give up on him and always believe in his abilities. He is now, (2011) the most stable for the longest, consistent time he has been in his entire life and it has been the best gift for us to be able to enjoy him and he to enjoy himself. He does still have quite a bit of anxiety, brain lock and frustration, but it is manageable for him, and for the most part not becoming overpowering in the classroom. I am daily thankful for this time, for his happiness and for being blessed with this dear, wonderful boy.
2012 update: As expected stability is only short-lived, school is a challenge, a constant roller coaster of trying to maintain, keep up, manage. He is sent home often, I am “on call” at all times, required by the school. His mood swings a constant mystery. He is driving, yes, he passed his driving test.
Many question his ability to drive, is it safe, is he safe. We felt like driving would give him one more achievement to add to many that help him feel like a regular kid, and knowing that HE is aware of his moods, not driving when he is frustrated. We found him a cute little truck and bought if for his 17th birthday. It really looks like it was made for him. Each day as I see him in it I am still so amazed that he can, and does, and this is my baby, growing, learning, overcoming.
Good Boy Roy continues to grow, bit by bit, as we continue on this dream and hope of making it a household name…a mix of The Simpsons and Life is Good. Some great Media has come his way, really too many to mention here, but one of my favorites is this article in Town Magazine
So, as always, living the life we do, loving a child with so many complicated issues, we live not one day at a time but one minute at a time. Let go and Let GOD.