Snap Shot

Last week thoughts were swirling as to what to write but the week took over and I'd like to share to help others catch a glimpse of a special needs family life and to help those who live in not feel alone.

A couple of Mondays ago I called to schedule Ada's annual MRI to check up on her AAI. The woman who answered decided to be defensive and snotty by defending her statement that I needed to fax the order in before making the appointment. I didn't ask for an explanation and was more than happy to fax (but, seriously, how inconvenient is that?) that so I'm not sure why the defensive attitude. I had Greg fax it at work and they called the next day fifteen minutes before they closed for the day, and the day Greg left for four days, so I decided to wait until that Monday.

Ada riding a plunger at Urgent Care after she stuck the plunger part on her face.
Sunday after being a single mom for three days I realized that the winter blues were hitting me. Not like other years but it wasn't definitely there and Ada wouldn't stop acting obstinate. At the ice rink waiting for her sister she licked the pole of the glass windows of the bleachers and then look at me and say "hey mom, look." Um, yes, I see you licking the pole so many have touched and thanks for taking your shoes off and refuse to put them back on.

Monday I called the MRI office back and they informed me that the machine we need is broken so they will call me in a few days. Those days came and went and they never called so I will now have to call back once I can spare a moment where someone isn't trying to grab the phone and talk for themselves.

I also had to fit that MRI phone call in between the phone call that was never returned about signing up both June and Ada for speech and occupational therapy evaluation. Thank God, for efficient pediatricians who did give me the prescriptions for those visits and had the correct diagnosis written on them. Insurance companies won't cover speech or OT if "down syndrome" is the diagnosis. Unfortunately, when I called the insurance company I realized that paying for Ada's therapies is outside our budget this summer because she will be going to a special needs camp to keep a better routine for her. June's are covered because her hearing loss is covered by a supplemental insurance we have from the state of Michigan.

Ada was miserable for four days. Barely moving and asking me often to "hold you."
Oh, but why wouldn't you have time to do all that, Ann? I mean, isn't Ada in school? Why, yes, she is but she now has hand, foot and mouth disease and an ear infection. I've slept with her for four nights now as she moans miserably because of the pain in her throat. She came home feeling miserable Thursday and I had to rush from my one day of nothing but calls to make going on.

There was a mix up with the special needs camp, so Friday I was filling out forms last minute and in a hurry so we could apply for a scholarship before the deadline. That left me running to the camp office twice in one day in-between June's IEP and my time I volunteer in her classroom. Greg worked from home that day to watch Ada because she had come home the day before sick.

Maybe this is how everyone's lives work but every time I think of working more than part time, a week like this happens and I realize this isn't the season for me. I want to be the one doing these things and being available. Right now, I believe I am the best advocate for my kids in meeting their needs even though some days its hard. I will continue to look for the good and be grateful.



Comments

  1. A friend and I were just talking about how exhausting it is when you need to do a lot of appts. Her kids are in therapy, one has two different kinds. Mine are simpler but every fiber of my being rebels at the phone calls/appts/bill and referral tracking. You are not alone! And you are carrying a heavier load than most. Prayers for you and hoping for rest for you!

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    Replies
    1. Totally! My body resists those phone calls! Thanks for the prayers!!!

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