No parent ever wants to hear a doctor tell them their child isn’t normal, even if you know the fact long before that day comes.
Even yesterday at the doctors office, she sat on my lap, snuggled into my coat and sucked her thumb and looked at me with those bright, blue eyes. As the doctor talked, I stroked her blond hair and she would giggle when I tickled her neck. The news wasn’t good, but it was no surprise either. After some testing, Lillian (who will be 2 next month) is currently at the level of a 9 month old. That’s more than a 50% delay, which is severely delayed and borderline mental retardation.
While most kids her age are heading into the ‘terrible twos’, Lillian can barely crawl, can’t walk and has no verbal skills. She does not say ‘mama’ or ‘dada’ or ‘baba’ or anything. It’s also unclear if she even recognises her own name and certainly doesn’t understand any kind of commands.
There is no diagnosis for her, yet. Over a year of testing blood, MRI’s, Ultra Sounds, EEG’s, EKG’s have found no abnormalities, all of the major genetic disorder tests have come back normal. And while Lillian has made, significant progress over the last year, she hasn’t closed the developmental gap any and that gap will only get wider as she gets older.
The next round of tests will be another MRI, some more blood work and a visit to a geneticists. We had hoped, that her delay was due to a complication after birth, but it’s looking like that delay was more a symptom than a cause (she spent over a month in the NICU and several days on a lung by-pass machine and had heart failure as an infant). But until they actually find something, give a name to her problem, we still have this small sliver of hope that she will close the gap and be a normal happy kid.
Happiness, isn’t an issue for Lillian, she is always happy. The look on her face when she sees me get home from work, warms my heart even on the toughest of days. She has particularly bonded well with her older sister, Sophia (age 6) and the two of them do everything together, watch TV, eat, play games, play with toys, take a bath, even sleep together. Neither of them can sleep alone these days without the other one present! Sophia goes above and beyond the call of a sister, no matter what she does, she wants her sister present. Sophia would take Lillian to school every day if she could.
Having a ‘special needs’ child not only puts an emotional strain on the family, even with a supportive extended family like we have (grandma and grandpa live upstairs and have done more than their fair share with Lillian). Because Lillian has no real physical issues, we don’t visit the doctors very often other than for normal check ups and follow-ups (and the occasional ear infection). But Lillian gets in home therapy (for free) through the Albany County Department of Social Services.
She currently has 6 half hour therapy sessions a week. It doesn’t sound like a lot, but it is. It is problematic with a work schedule and if it wasn’t for the support of our extended family, my wife would not be able to work part-time as she is now. I give grandma and grandpa a lot of credit, they have really embraced the role of watching and caring for Lillian on the days my wife works, even opening their home in retirement to what seems like the endless line of therapists. Having all these therapists means that there is nothing spontaneous in our lives. Everything becomes calculated, planned and dull.
At times this gets overwhelming and it seems like everything suffers. Having a child like Lillian, puts strains on a marriage. My wife and I can no longer do the things we used to, because Lillian is to heavy to carry comfortably for long. Even the activities like birding, we are forced to do from a car, which isn’t a bad thing, you can still find good birds, but it kind of takes the exercise and outdoors aspect away. Plus there is the financial strain, not that we have to buy Lillian anything special (her needs are generally met for free either through the County or State), but my wife can’t work full time and I work for a non profit and small Museum, which isn’t going to make anyone rich. Trying to maintain a family of four on less than $25,000 a year is tough, but again thanks to the support of our extended family, we always manage to scrape by and that’s enough for now.
Part of the meeting with her developmental doctor yesterday was to talk about getting Lillian into a Center based program. She is clearly benefiting from the therapy she is getting already and nearly everyone agrees she would benefit if she got more. But we can no longer provide that type of service at home, its just too much for us, Sophia (who won 2 second place trophies at her first ever karate tournament last weekend, but likely hasn’t gotten the credit she deserves with her sister around) and the grandparents. Everyone has put their lives on hold to make sure she can get as much therapy sessions as possible. The thought of her having to go to the Center for the Disabled, at some level pains the heck out of all of us. On a more realistic level it is a break we have been all looking forward to. The thought of being able to go anywhere during the day when we are no working, is very appealing. No planning, no canceling or changing of plans when we can’t find someone to watch her and to know she is in a safe learning environment, with very qualified professionals which can only help her live as a close to a normal life as possible is very appealing as well. We all love Lillian very much and would like nothing more than to keep her home, but that is no longer in her best interest or ours. She is not difficult to care for, but as she gets older, heavier and bigger it is becoming more a challenge. Even though we have had help since the beginning, it still takes a lot of courage to ask for more, even if it means going down a road you never wanted to.
But as depressing as it all sounds, she is a lot of fun. She is such a snugly kid, its ridiculous sometimes. She will happily watch a baseball game or TV with you for hours, happy as a clam. And while the doctors like to point out all the things she isn’t doing, we like to focus on what she can. Her favorite cartoon in Curious George, the only cartoon she will eagerly watch and get excited about. Barney, Arthur, Seasame Street (in particular Elmo), Dragon Tales and Spongebob Squarepants (ok her sister gets the TV every now and then, but Lillian doesn’t mind). Lillian knows her away around our house and knows where Sophia’s room is. Even if we try and punish Sophia by sending her to her room, within seconds Lillian is off down the hallway and will sit right outside of Sophia’s door until she comes out (or lets her in).
One of her therapists recently brought her a new walker so that she can get moving again (she out grew her infant one). Once she gets that figured out her and her sister will be back to running through the house at full speed, playing tag.
Yesterday we started putting up our Christmas tree (after choking on the prices of real trees ($50 bucks for something that will last 3 weeks?!!!) we went back to our fake one). Lillian was beside herself with everything involved in Christmas. Her eyes were as big as apples as my wife and Sophia started getting all the decorations out. She was in her glory, laughing and getting tangled up in the tinsel, watching the lights and crinkling paper.
But thanks to this blog, I’ve gotten a chance to vent a little and while I’m sure I’ve been depressing, I’m really not. Those looking for cheerier posts, won’t have to wait long, got two good snow storms on the way and the Christmas Bird Count season is about to begin, so there will be lots of trip reports and pictures, plus the Mitchell report is due out soon about steroids in Baseball and I’m sure I’ll have a thing or two to say about that.