Point of Grief

When you first find out that you are having a child with special needs, you go through a grieving process. This is where you come to terms with the fact that you are not going to have the child that you expected. Each person grieves differently and eventually, they come to accept this new future to one extent or another. But what people don't realize is that the grief process continues. And yesterday, it hit Mommy....she has therapy fatigue.

We have a busy schedule and it all revolves around my therapy sessions. You see, here is my normal weekly schedule:

Monday: Therapy Playgroup
Tuesday: Music Therapy/Kindermusic
Wednesday: OT Therapy and Speech Therapy
Thursday: OT Therapy and Therapy Playgroup
Friday: Doctor's Appointments when scheduled

All of this therapy is starting to take it's toll on Mommy. Yesterday she realized that "typical" kids get to just enjoy time at home (or daycare) with their parents and do things with pretty laid back schedules during their first few years after birth. But instead of having this same experience as most parents, Mommy had the epiphany that she is a "Therapy Mom". Kind of like the "Soccer Mom" that you hear about but only, we're not heading to the fields. We are going to playgroup sessions, therapy appointments, doctor's offices, hospitals, and clinics.

It's exhausting. For example, yesterday Mommy drove Jonah and I to St. Joe's Hospital South Campus for my OT appointment at 9am. This is after 2 hours of preparation, last-minute diapers changes, breastfeeding Jonah, packing bags, and trying to get me to eat my waffle. She also had to fit in her shower, brush her teeth, and putting on a baseball cap (doing her hair just takes too much time somedays). After we finally get to my 9am therapy session at 9:10am, she had to participate in my therapy session, take notes, and juggle Jonah at the same time.

After my 9am therapy appointment, it was off to my 10am Therapy Playgroup (aka Sensational Toddlers). This is a great group but it's also full of kiddos and parents. Mommy struggled the whole hour and a half just trying to keep track of me and take care of Jonah at the same time. She got a little frustrated during arts/crafts time because someone grabbed me and took me to a painting table then left me alone. She then had to hold Jonah with one hand while trying to help me paint (or more appropriately trying to keep me from painting the kid sitting next to me). And how do you clean up a wiggly, paint-covered toddler while holding a crying baby with one hand?

Anything that needs to be done happens after my therapies and is planned accordingly. Mommy schedules all of my therapy in the morning so we can do other things in the afternoon that need attention. This includes grocery shopping, laundry, lunch (don't get her started on this one), and doctors appointments. Yesterday, it was a doctors appointment. So we rushed home after Sensational Toddlers and Mommy pretty much force-fed me my lunch. I'm having a little issue with eating right at the moment so it's not a fun time around our house.

After lunch, before heading out the door, Jonah and I got our diapers changed. Except I pitched a fit and managed to pee all over the floor and Mommy while she tried to get me cleaned up. I had lots of lentils in my diaper and they were stuck everywhere. Mommy had to peel each lentil off of me (down there) and I wasn't about to sit still for her.

Now you might wonder how lentils ended up "down there". Well, that would be from the sensory table at playgroup. This is a large table/bin filled with different things so we can experience lots of different textures. Sometimes it's shredded paper or maybe it will be filled with water. We never know until we get there. Yesterday...lentils. And I got put in there with only my diaper on. So that is how I had lentils in places lentils should never go. It also explains why Mommy was late to her doctor appointment. She had to clean the lentils off of my "down there", mop up the pee from the carpet, hold me down to get a diaper on, and then change Jonah who wasn't the happiest camper at the moment because everyone's been screaming.

After the doctor appointment, Mommy also had to run to get stuff for Down syndrome Outreach, approve stuff at the Copy store that has been waiting to be printed for 3 weeks, got the grocery shopping done, and get a prescription filled.

Exhausted yet? Wait! There's more! Mommy then went home and made me dinner, fed a very fussy Jonah, and stamped all the newsletters for Down syndrome Outreach. She also did two new ads for the office, got us kids in our pajamas, and then by the time Daddy came home, we all went to bed.

Now Mommy realizes that all parents are busy but she is convinced that parents of kids with special needs have it particularly rough. We deal with all the normal parenting issues such as teething, piles of laundry, numerous feeding times, diaper changes...but then add therapy sessions, doctor's appointments, medicine schedules, and more.

I guess this is just one more little moment for Mommy where she grieves that she isn't having the parenting experience she thought she'd have. So instead of a fairly carefree parenting experience, we deal with:
Learning new signs. Are their germs on that play toy? What is our therapy schedule today? How can I get my child to vocalize? What therapuetic benefit will this toy or activity provide my child?...and so it goes. But Mommy doesn't only grieve for herself. Jonah goes to each session too. And even though she tries to pay very close attention to him, we are at the therapy session to focus on my development. We try to include him in all of our songs, etc. But he's not getting the childhood experience that most babies get. Another point of grief.

So Mommy lets us take naps at seperate times so that she can have "Jonah-only" time to make up for this. She doesn't get a break but Jonah gets his own special time. All of this is a reminder to Mommy that she is in a continual process. That this isn't the parenting experience she had dreamed of. Normally, she goes with the flow and each situation can be made into a funny story (aka the lentils in my diaper will be funny...later). But today, she's just tired. Now it's off to practice my new things learned from speech therapy.

And before we go, to all those single Mommy's out there. You are amazing.