As the year comes to a close, I am doing what lots of people do…reflect. So, I’m prepared to grab a glass of wine and some quiet space and jot down a few of the lessons my awesome kiddos have shared with us this year. Here goes nothing.
1) Turning 3 years old is a big stinking deal. In the disability world, when you’re 3, your status with the County DD Board changes. Your status with the public school system becomes an option. Your status with the Cleveland Sight Center changes. Your “0-3 is KEY!”
Early Intervention status evaporates. Your mom will assemble, complete and submit mountains of paperwork on your behalf. You will be assessed by a whole host of new people. Your mom will walk out of your IEP (Individualized Education Plan) meeting with her head spinning after receiving a 42-page IEP for your school needs. You will change classrooms. And you are even going to ride a bus (a small van, really, but still) to each school.
In the disability world, when you turn 3, your mom will quickly realize that changing status with your team is harder than she anticipated. Baby Jude turned 3 in December. And I feel a tad lost without the team he had – Donna (The Wizard of Calico as I call her), Help Me Grow Tim, Cleveland Sight Center Brenda, who taught Jude how to see with his eyes and who taught me how to see with my heart and cheered me on to pave the way for Jude these past few years.
I know his new team is fabulous and much time, effort, care and concern went into both teams coming together to write the plan for the next 12 months. Like I said, turning 3 is a big stinking deal.
2) Jane makes a stunning “blonde.” Hair has been a constant battle in our house. Jane has an extremely tight grade of hair. Always has. When she was a baby, her hair only grew in as tiny, tight, coarse patches on about half of her head.
Her Dad lamented that “she has a half-fro not an afro!” We have tried every product on the market – and products not on the market, like natural Shea oil straight from Ghanna. We have cycled through a half dozen or so hair stylists with varying levels of success. We have laughed, cried, battled, researched, read books to her, listened to “I Love my Hair” by the black Sesame Street character ad nauseam.
Hair has always been a battle. Now that we’ve found a great African hair braider, we seem to have a much better handle on the issue. Jane brings up hair conversations far less often. Until she dressed as Carly Simon (I get how strange that may seem as a 5 year old’s costume choice) for trick or treat.
Jane became very, very attached to the Carly wig. We finally came to a negotiation. Jane is permitted to wear her “weekend blonde hair” for a little bit after school on Fridays – just for fun. Not to cover up her gorgeous natural hair with awesome braids and beads. To me, Jane was stunning even with a half-fro.
3) Generosity is everywhere. We are very blessed. From Polar Express tickets with the book, to gift cards, to a total surprise Christmas Eve dinner, we have been showered with love and generosity by family and strangers alike.
And when I was given the chance to pay it forward a little bit on Christmas morning, I did. I heard that a dear friend’s tree had toppled over just as she and her two little boys were celebrating Christmas. I sent Vance to her house with OJ and champagne in hand – mimosa’s for Mama and manly muscles to right the tree.
4) Getting a 2 or 3 year old to keep glasses on seems an insurmountable feat. But after the amount of time, effort, paperwork, fittings and doc appointments that went into getting these spectacles (twice in fact, courtesy of puppy devouring the first pair), I’ll be damned if Baby Jude doesn’t learn to love these specs.
5) Parent teacher conferences crack me up. Sitting in ridiculously small kindergarten classroom chairs is an asinine concept for adults. Holding the conference with my kiddo in the hallway is an asinine concept. Jane heard every word. Which is ok, because I was planning to tell her everything that we chatted about anyway.
But then she quoted back my own words of, “It’s ok Mrs. B. I had my first parent/teacher conference for Jane at 9 months old and she was getting kicked out of another daycare. There is nothing my kids do that will embarrass me or make me defensive. I will appreciate your help, though.”
Jane followed it up with, “Man, how bad was I as a baby? No one gets kicked outta daycare. Couldn’t they have just sent me to the hallway?”
I love Jane logic. Next year Jane and her supersonic hearing will be across town for conferences.
6) Akron Children’s Hospital is a one of a kind outfit. Amazing docs, therapists, nurses, staff. When I can make one call and get a next day appointment with a high level specialist, when the sedation team meets ahead of time to find the best way to get an IV into Jude as an order is called in with his name, when the front desk gal in OP Therapy intentionally feeds the fish in the lobby while Jude is there to entertain him (he’s obsessed with bubbling fish tanks), when the news that a fave occupational therapist is moving on kicks me in the gut as a major loss, I know that the facility has an amazing team of pros there. Akron Children’s Hospital is amazing.
7) Looking for a job is a full-time job. I have always known this. But I have been painfully reminded, recently. You see, in my professional life I have gotten an interview for every job I ever applied to. I have gotten a job offer for every interview I ever attended. Until now.
I’ve been out of work for well over two years, attending to Baby Jude’s intense schedule of therapies, doctor appointments, surgeries, sleep, aspiration pneumonia – you name it. I don’t regret those years – at all. Putting family first is the right thing to do.
But it sure is a kick to the old ego to have a hard time landing a gig, especially since my professional experience is in recruiting. I can write a resume with the best of ‘em. I can interview with the best of ‘em. Explaining a 2+ year gap that ends with a conversation regarding my 3 year old son with multiple disabilities, that piece I am still polishing.
8) Looking for social activities that Baby Jude is cool with is another full-time job. The carousel – thumbs down. Chuck E Cheese – his own personal hell. Pump It Up – a fate worse than death.
But he has learned to accommodate for some of his sensory overloads in smaller, quieter social situations. At a kid’s birthday party, he will seek out a small space that is fairly contained and bring a train there to entertain himself into a train-induced, coma-like state.
At home, he’ll hit his ears, close his eyes and whisper to me “too much!” That “too much” is Baby Jude/mom code for “take me to my room and turn on the fans.”
Gone are the days of batting his face with his right fist and slamming his head into anything and everything. Now he finds small, quiet ways and fans to get through an over-sensory situation. Color me impressed with him.
9) Little girls don’t wear Tinkerbell undies forever. This Christmas my sister asked what she needed in a gift. We answered “the basics, socks, tights, undies, comfy clothes.” Aunt Maggie hit the nail on the head and delivered.
Jane is a well dressed, warm footed little lady now. But, I have to admit, when I opened the packages of size 6 Hanes “hipster style” undies in bright bold colors and didn’t see a Tinkerbell in the bunch, I got a lump in my throat.
As proud of Jane as I am, and who she is becoming, I was not ready to let go of something as simple as little girl Tinkerbell undies. But Jane was so excited to have “big girl” underclothes that she wore all 3 pair in one day. At the same time! I guess she is still my silly little girl.
10) Potty training boys is more difficult than girls, or so I’ve been told. Potty training a boy with cerebral palsy (causing major chronic constipation), sensory issues, developmental delays and the rest of Jude’s mixed bag of tricks appears like a crazy challenging task.
Nevertheless, asking for the green light to start training is at the top of my list at his 3 year old well baby appointment next week. I might even get sassy and throw in the “can we start transitioning to a toddler bed before the APS Mobility Assessment or should we wait” question. Exciting times.
11) Just Jane Time is important. We made the decision this year to seek out some additional “Just Jane” things to do. Away and aside from all of the things Jude has to and gets to do.
A dear friend (who happens to be an incredible art therapist) spent about an hour a week with Jane over the summer. Just Jane time. I dropped her off at Shenan’s. They crafted, talked, giggled, swam, snacked and it was all about Jane.
It was a perfect marriage of me stealing an hour or so to get Jude to whichever appointment, knowing that Jane was in loving, expert hands and getting some Just Jane time. Jane and Shenan will be lifelong pals – and Jane might be a budding artist.
We also started her in piano lessons (soccer, karate, tee-ball, Little Gym, ballet – all a bust). Piano is taking off. She adores it. She practices, and even asked for a keyboard at Christmas.
The coolest part is that her piano instructor was also her (and Jude’s) foster mother. Mrs. Elise. One of the kindest, gentlest, most Godly women I’ve ever known. Our family is lucky that it was Mrs. Elise who lovingly parented our kids first.
And Jane is lucky enough to get some Just Jane time sitting on the piano bench right next to Mrs. Elise, her very first full-time parent.
12) Everyone gets tired. I am not proud of it, but there have been a handful of 2012 moments when I lost perspective. When I felt a little self-pity party was warranted. When I was less of a friend, wife, sister, mother, neighbor than I should be.
But those moments passed quickly. Just looking at the faces in my house, the faces of my family, and the smiles of Jane and Jude, can turn a pity party into a full blown celebration anytime. They are gifts from heaven.
And it is solely because of them that I am able to look around and remember how grateful I am. How prayer, infertility, adoption and special needs have made me. And how hopeful I am, even when a little tired, for their lives, their futures and their successes. How hopeful I am that I get to be the one to comfort them in their disappointments.
I am hopeful for all of it.
Happy New Year all.
Grateful, Prayerful & Hopeful.