I’m calling this blog, Jenni. Maybe because it’s her thirtieth birthday? I don’t know. I always have such deep, emotional thoughts on her birthday. Don’t get me wrong, I am not shirking my motherly feelings toward Kimmi and Nicole, but with Jenni, it has been such a long and emotional road.
On a good day, she acts like a 3 or 4 year old? She comprehends everything around her, she just can’t get the words out. (In fact, right now, she is watching ‘Couples Retreat’ in her room). Believe me, I have been waiting for 28 years for her to speak. What I would give to have her carry on a conversation me with. But I will gladly settle for her laughing and smiling and hand gestures that she constantly does for me. I have learned over the years HOW to ‘read her’, and know when something is amiss! (Boy do I)! When she was a baby I used to be thankful she ‘only’ had Down’s and was grateful she had two older sisters. I figured with my other two girls under age 4 when Jenni was born, it would be helpful in her development. And it was. With them being close in age, and me hauling Jenni to her infant stim classes in another town for the first three years of her life, I had high hopes for her mental development. There is NO handbook when you give birth to a baby who has a mental (or physical) disability. (Or a handbook for a normal baby- I really HATE that term). Heck, we didn’t even know she had Down Syndrome when she was born. I suspected it, but it was never said out loud until she was a week or so old. At the UCLA genetics clinic I was hoping beyond hope and praying my ever loving prayers that we would be asked ‘Why are you here? She is normal!’‘ I remember that 2 doctors in white coats came in to the exam room, one wearing a camera around his neck. (Huh?) Before they even looked at this sweet little 6 week old baby with a round face and chubby cheeks, one doctor started rattling off a list of things about HER: the back of her neck is flat neck, her muscle tone isn’t there, she has no fingerprints, she won’t walk until she is 4, won’t be toilet trained until she is 5 or 6, and on and on and on. I pointed out that she DID NOT Have a flat neck. Or that she had poor muscle tone. Or that she had NO fingerprints. Finally, they looked at her and said “Oh you’re right. Her neck isnt’ flat. She isn’t like a ragdoll and she does have fingerprints”. Right then and there, I could foresee what life was going to be like. If these two genetic specialists just spewed a list of ‘things’ that my baby supposedly had wrong with her (and didn’t), I already had lost faith in the medical profession.
Jenni rolled over on her own at one month, sat up alone at 6 months, creeped along (holding furniture) at 11 months and walked alone at 13 months. NO words though, just cooing and smiling. She was toilet trained at 3- even night time diapers went by the wayside. She progressed along pretty well……..just couldn’t express herself verbally. As the years went on, there were huge discrepancies beginning to appear between her age and her overall mental development.
She had a lot of good times in her later school years: Proms, dances, girl scouts, and girl scout sleepovers. There were some not so great moments as well that happened over her school career- and we never found out precisely what happened in those unfortuante circumstances. We have some good ideas though. (When she was 6 she came home from school with a split lip, teeth knocked out, skin on her nose torn off, blood on her sundress but NO adult saw anything? 3 adults in the classroom and 4 children and NO ONE saw anything?)! Gets my blood boiling again thinking about it.
I’m not going to say it was easy watching kids younger than her pass her in speech and development. It was very hard. I saw my three nephews, born 6 and 9 years after her zip on past her in every way. And now my own grandchildren, especially Carter, who is 5 1/2 years old asks ME questions (what’s new there) about Jenni. “Why doesn’t she talk? Why does she watch movies all the time? Why do you take her to the bathroom?” All logical questions. As long as Jenni is happy (she is), and healthy (she is) and keeps on smiling and laughing and using her hand gestures to keep me informed as to her moods, then that makes me very happy and content. She’s kept these old bones of mine feeling years younger because I have a perpetual preschooler. And I wouldn’t change her for the world!