A Change Is Gonna Come

Got to love Aleck and his Daddy in their navy blue sweaters.
Got to love Aleck and his Daddy in their navy blue sweaters.

For many people I know the beginning of October is their favorite time of the year.  There’s so much to do, like apple picking, football games, and getting ready for Halloween.  There’s so much to enjoy, like pumpkin flavored everything, apple crisp, and apple cider.  As the leaves change their colors on the trees we change our wardrobe, our daily acitivities and schedules, as our days get shorter and eventually colder.  In our household the beginning of October this year is marking just a few too many changes for my sometimes fragile psyche.

Unfortunately our leftover health insurance from Craig’s old job ran out on us on October 1st.  Thankfully we got the letter on 9/29 that Aleck was approved for All Kids insurance and they are still working on our paperwork for our insurance as well.  However, our old insurance was pretty spectacular which is why I only complained sometimes how we paid through the nose and through our other parts as well to keep it going.  Working with All Kids is uncharted territory for me and I’m kind of fearing the unknown right now.

What we do know is that All Kids doesn’t cover in home therapy and neither does our secondary insurance which brings us to another big change right around the corner.  Aleck is turning 3.  Or is it, “Aleck is Turning 3!!!!”.  All depends on how you look at it.  Of course I’m excited for his birthday, we are getting him excited about it as well, and I’ve been storing up unopened toys and little items here and there I know he’ll love just so that we are ready to give him a great day.  Dinner has been planned for the night of, a trip to the Brookfield Zoo for a few days later, and everyone knows what they are getting him for our little family only dinner party.  The perfect party for our little man and he gets to share it with his cousin who’s birthday is only 3 days later.  “Good times all around”, as my sister in-law likes to say and she’s kind of awesome.

But with this exciting time comes the end of Early Intervention and I’ve been basically dreading this since we started the program when he was two months old.  Aleck’s OT and I have examined it from every angle and with what we’ve got going there is no way to pay for in home therapy anymore and truly, that’s O.K.  Luckily we were smart and luckily when given the opportunity we established a relationship with the RIC since hospital therapy is covered.  All we need to figure out now is whether to do 4 sessions a week at the RIC or 2 at the RIC and 2 at Shriner’s since they now offer outpatient therapy as well.  In the end his therapy is going down from 5 sessions a week which is what we’ve been doing since he started preschool, to 4 sessions a week.  I’s not a huge loss and we are already on the right path to continue his treatment without missing a beat.

However, we are going to miss our team, a lot.  We already miss Aleck’s old PT Ali who was integral in getting Aleck on his feet and walking.  I can’t even tell you how exciting it was that the first time Aleck took steps on his own was just an hour before she walked through the door for a regular session, it was liked he timed it perfectly.  Now we have Katie who used to work with us when we were inpatients at the RIC and she’s been out of this world awesome too.  She’s got the perfect personality to deal with our little “threenager” (Thanks Becky Barak for that term), and she’s got the knowledge to fill in the gaps and take him to the next level.  Aleck is definitely going to miss playing “peek-a-boo” with our nutritionist, Kathleen.  I mean, if someone has to come to my house every two weeks to weigh my child thank god it’s someone who brings warmth, comfort, and light with her everywhere she goes because otherwise I would have kicked her out a long time ago. Looking at that scale is like having a mini heart attach twice a month, yikes.  Personally I’m going to miss our social worker, Faye, a ton.  She’s been part aunt part therapist to me for 2.5 years and I swear I’ve climbed down from that ledge many times because I knew she was coming or because I got a text from her cheering me on. But more than anyone else we are going to miss our OT, Kate.

Just imagine: you’re a new mom stuck at home with a screaming non-stop crying infant who throws up on you everywhere; who’s got some new painful splint or cast on every single week; who makes it so your only outings are to the hospital for marathon casting, splinting, and adjusting sessions; who’s doctors have given you the worst prognosis they could possibly put together; who didn’t smile until he was 6 months old.  In those situations it was practically impossible to make a phone call, to have friends come visit, to make time to play or be with any of my friends so I found myself crying on the shoulders of orthotists, nurses, case managers, and especially our OT Kate.  She entered our house on a cold December day early in the morning and brought such a warmth and light with her, literally since the first toy she really played with Aleck were these light up easter toys, and smiled at me to let me know that everything was going to be all right.  Her shirts were soaked with my tears as she listened to all my fears, all my worries, and everything else that was troubling me at the time.  She shared with me, slowly but eventually, the details of her life and her own struggles and we recognized in each other a kinship, working together on Aleck’s care, and forming a bond that will stay with me for a lifetime.

Eventually Craig is going to find a great new career and eventually we are going to have great health insurance once again, so eventually Kate & Katie will return to our household and to our team since I know we are determined to keep them in our lives.  (And Ali, Faye, and Kathleen…we’ll hopefully never lose touch with you either)  Thank you Early Intervention, thank you Holly, Amanda, & Catherine our caseworkers.  Thank you to Stephanie our feeding specialist, and of course thank you Ali, Katie, Faye, Kathleen, & Kate.  Aleck turning three looks more amazing than I could ever imagined and it’s all thanks to you.  oxo



2 Replies to “A Change Is Gonna Come”

  1. I’m stealing the term threenager! I’ve one one of those at home too!!! We need to get the boys together next time I’m in town! Happy birthday Aleck!

  2. I don’t want to be angry, because I know from experience it does not help you. The insurance crap just makes me so mad. We have to be thankful for at least having SOME kind of insurance. And thankful that your little guy can still get some therapy at least. I KNOW you guys will be totally OK, and can sooooo do this! Just look at everything you have been through! You guys will work it out. Love to all of you. Stay strong my dear.

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