To my dear beloved special Dovi,
In all likelihood, you will probably never read this letter. It will take a miracle for you to ever learn to read. I have learned to stop expecting miracles. I am still waiting for you to call me “Mama.” It might never happen either.
This Shabbos is a very special day. It is Totty’s and my seventeenth anniversary. Five years ago, on our twelfth anniversary, something incredibly special happened. I’ll never forget that moment as long as I live. After 9 months of pregnancy and 13 endless hours of labor, a writhing, screaming, gorgeous, pink, healthy 7 pound little boy was thrown onto a blue sheet that had been draped across my belly. I cried for five minutes straight. I couldn’t believe that after struggling with infertility for 9 years, and struggling to raise a head-strong preemie for almost 3 years, I was granted a second chance at making things right. A little brother for Chaim. It was incredible. Totty and I looked at each other and I commented, “How amazing is it that on our twenty-fifth anniversary we will celebrate this baby’s bar mitzvah?” The future was bright and exciting, the possibilities open and endless.
Little did we know.
You were the perfect baby in every respect. Blonde, blue eyed, always smiling, always happy. You nursed like a champ for 2 years. You rolled over at five months, sat up at six, crawled at nine, walked at thirteen. You had first sounds and first words. I was super careful to discipline you correctly and try to ‘raise you right.’ You were my Gerber baby, my wonderchild.
And then, when you turned 18 months old, everything imploded.
It started innocently enough - stimming, staring up at the ceiling. Then came loss of words, loss of sounds, loss of eye contact. We all know the rest.... a one-way trip down a dark tunnel so endless, so deep, so dark and awful.
It is now three years later. Totty, Chaim, and I are battle scarred. Our days and nights revolve around your needs. We struggle to keep afloat as a family, to keep the normalcy of the house flowing - and failing. Because of circumstances that you did not choose, such as your severe ADHD, we are forced to employ a lot of outside help to meet your needs while balancing the needs of our family. It kills me every time we send you to respite for Shabbos. But we have no choice, and we know you love it there.
This Shabbos, you will be celebrating your fifth birthday - not at home, but at respite. My eyes are blurring with tears as I write this - I can barely see. I will be thinking about you all day - your beautiful smile, your inimitable charm, your hugs and cuddles. I will be thanking HaShem for the small gains you have made in the past year; you are a different child than you were at your fourth birthday. Your receptive language skills have grown by leaps and bounds and your social interactions have improved. We have had to adjust our dreams and expectations of you, and we love you exactly the way you are. Our love for you will never diminish, no matter how difficult life gets sometimes. At the same time I cry for the loss of what could have been and for what will never be. I look at you and cry about your inability to express yourself, your inability to interact with your peers and your inability to occupy yourself constructively in ways that do not include ripping papers to shreds or jumping on and off chairs. It must be really difficult being you and my heart goes out to you.
Happy birthday, my little special tzaddik, my special neshama, my love. May it be a beautiful day, and you should enjoy it in your own happy, innocent way, the way only you can.
Your loving Mommy
Wow. You are so special. Tears in my eyes.ReplyDelete
Mazel Tov and Happy Birthday!ReplyDelete
May you merit to see lots of nachas from him and from all your sweet kinderlach. Keep up the good faith and believe that good and wonderful days will come your way bezr'H.
This is likely an impertinent question, but why on earth do you need so much outside assistance with your son Dovi (special ambulette to take him to/from school, Res Girl to watch him for 1-2 hrs a day, weekend respite, Shabbos respite AND/OR Res Girl on Sundays too, etc) when you are a stay at home mom whose other, older child is in school all day? And Dovi is in school or at therapy for most of the day, five days a week?ReplyDelete
It seems curious as, well, when do you spend time with Dovi? Why do you outsource virtually of his care when you are at home with no other children to care for or paid employment outside the house? What do you do all day, as it appears you do not care for any kids five days a week?
That ws actually a good question. The reason why Dovi needs so many resources is because his extreme hyperactivity / impulsiveness / energy level make it almost impossible to care for him myself. He is a whirlwind. The moment he steps through the door, every piece of paper in the house is ripped, food is flung on the floor, he is in every room and on top of every surface. I can only handle him for about an hour at a time without help. When I dont have help in place for him, within an hour I'm on the floor in tears and my husband walks through the house to find it in absolute shambles. He is very difficult to care for/handle his behaviors, while at the same time doing other things like cooking dinner, cleaning up, washing laundry and paying attention to his older brother. Dovi is SO FAST, he can run out the back door and down to the backyard while I'm in th bathroom for sixty seconds. And on Shabbos we cannot use the DVD player so his day is long and endless. He has the attention span of a fly, so in five minutes he goes through sixty minutes worth of activities and I'm at a loss at how to entertain him / keep him in one spot for another hour or two.Delete
I spend time with him 1) every morning, 2) every evening, 3) Friday afternoons, 4) Shabbos when he doesnt have respite or volunteers. And after an hour or two, I am just physically nd emotionally depleted. And the house is a wreck.
there is a LOT I havent written on the blog that goes on behind the scenes becuse I am reluctant to write personal information on the blog but there are other underlying reasons why we need so much help with him. However, this summer he will be away for a little while and I am going to take some steps to ease the burden on my family and try to make him easier to handle. I am going to rearrange his room and organize some things so he can spend more time playing in his room instead of running up and down the hallways and ripping paper. I am also going to revisit his medication and try to find the right cocktail to reduce his extreme ADHD.
I might send you a private email/message to clue you in on some of the other reasons why I need so much help with him, which I don't want to write in public.
Okay, you dont have an email address or profile, so I'll just have to leave it at that. But there will be a long blog post later this summer that will explain a lot of things I can't discuss right now.Delete
I don't know you and have no idea if you have a special needs child however I think your question is accusatory and unfair. Caring for a special needs child is greater than a full time job and is not only physically draining but emotionally draining. Having help is a necessity. Needing breaks is like needing life saving drugs. It doesn't mean you don't love and want to spend time with your child. It is the only way to actually be able to. I commend any parent who recognizes that they are a better parent to their special needs child when they have the proper support in place. I challenge you I try it before you judge Dovis mom.
Miriam you are very sweet for coming to m defense but I wasnt offended. I get this question asked all the time by clueless people, on my facebook wall, even my own home health aide chided me for relying so much on outside help... Dovi is so challenging we've considered applying to group homes (they all have long waiting lists and dont take such young children) so our only other option for our family to survive and continue is to get as much help as possible. I dont expect anyone who hasnt spent half an hour with Dovi to understand :D. Miriam if you're on Facebook send me a friend request, there are some priceless videos of Dovi you have to watch which I dont post here :DDelete
Sorry, but I, too, found her comment really offensive.
Yes, it was out of line, but I dont expect anyone who doesnt know Dovi to get it - the kid is a whirlwind and a tornado. They have to spend ten minutes with him and they'll go running for the hills with their tails between their legs. I dont expect them to understand :). But yeah, it's not nice being judged.Delete
Is their any way a mother with a 6 year old Autistic boy a can contact you? if so can you email me you contact to firstname.lastname@example.orgReplyDelete
This post is really, really moving.ReplyDelete
Five years later. Dovi is about to turn nine. It was quite moving for me to reread it.ReplyDelete