I woke up this morning, clearly on the wrong side of the bed. I haven't been sleeping well recently. Which may not be surprising, but to me it was since I was on a "great night of sleep" streak for about six weeks.
I growled out of bed, got ready and heard what sounded like blocks tumbling down the wall. "AJ's up," I announced. I walked in to see a smirk-faced boy sitting on the floor amidst a million puzzle pieces and the container they go in-on top of his head.
We commenced the morning routine, which currently includes three medications. His seizure medicine goes down with ease. I'm the luckiest Mom on the planet that this kid has no qualms about taking medicine everyday. Twice a day. The second medicine and its mondo syringe to dispense it is met with minor whining from AJ and anxiety from me. I prep the mondo syringe with his antibiotics and prep a small syringe with his favorite-Tylenol. He loves Tylenol and Motrin. "This first, then this one, " I say. I give him the antibiotic one mL at a time, slowly counting down how many we have left. "All Done!" I exclaim. He swallows, then giggles as I pick up the syringe with the red cherry goodness.
AJ plows through his oatmeal and downs his milk. I groan noticing the oatmeal on every inch of his pajamas, face, and hands. If there is anything that I hate cleaning up, it is definitely oatmeal. He successfully wears his cochlear implants for a full five minutes before flipping a coil off as I am putting his braces and shoes on. I lose it. Tears, begging sweetly to be a good boy and wear his ears. While we make our way down the stairs for "the morning swing" he enables his shoulder to rub off the other coil. I watch the time closely while he swings, take him to the bathroom, and come upstairs. He commences the giggle-fest that has somehow become routine when putting on his jacket. It makes rushing nearly impossible and makes getting his jacket on even more impossible. We get to the driveway where he corkscrews, I let him fall, and he laughs. Some days he sits, today I was thankful he stood back up.
As we drive to school I watch him like a hawk in the "AJ mirror" attached to my visor. We arrive at school, where he flips a coil off as we walk in the door. I get in the car and feel the uncontrollable tears coming. I pull out and turn left onto a different street so I am not the mom in her car bawling in front of school.
By the time I arrive home I am no longer crying. The worries? They linger. The thoughts start running on their hamster wheel. School is not going well. We're four days post double ear infection diagnosis. His ears are fine. He's been "hearing" for a month after a ridiculous hiatus for who knows how long, this was not what we needed. Oh, I have to write that appointment in my calendar. How long will this last? I have to get him back in the pool. When is he supposed to see Dr. M? Make a plan for spring break. Schedule therapies for spring break...
The sun suddenly breaks through the clouds and I can feel its warmth through the window. I run around the house, opening the blinds and windows. How bright it is when light is allowed to shine in! I go outside and spend some time with the pooch and his Frisbee. He is happy, I am warm and suddenly feel better.
I find myself all to often wrapped up in the special needs that have special needs in our life as a family. It consumes a massive amount of time. And a lot of my own personal energy. I don't like to drag through a day but sometimes I do. Raising a child with special needs is different than raising a typical child. Until you do it, you really don't know or understand. I have wasted plenty of precious energy on trying to convey that message. I am needed more. I am needed in different ways. We are needed, often, indefinitely. You give more of yourself to your child than you ever dreamed possible. And yes, in a different way than parents just give themselves to their children. I'm not discrediting you typical parents out there. No, I am simply stating that my role as a parent is different.
Trapped under the fine print that comes with having a special needs child, I don't often see the sunshine. His needs-sometimes they make me angry. AJ doesn't. The needs do. The compound idea surrounding special needs can drag you down. I spend so much emotional and mental energy on what my child has needed/needs/is going to need that my physical energy suffers for it and I'm often a mess when my husband comes home. I'm thankful its not every day, but recently, yeah. It's happened a lot.
Time is precious. And while I cannot force or rush my child, I don't want to waste time either. I've had little bits of sunshine creep in here and there. I love his morning smile and his excitement during baths. I love how he cuddles me now, when for years I prayed he would do just that. I hate how tired and frustrated I am at times and how the first thought in my head is often therapy related vs. ice cream date with my son related.
I know too much to enjoy him sometimes. That makes me sad. I'm not an expert on cochlear implants or cerebral palsy or anything else he has going on. AJ is a special needs jambalaya. I need to know a lot in different areas, which is often frustrating to me. I feel like I have no focus. In essence, I do. AJ is my focus. But when it comes to his needs, its multiple choice.
Spring might just become my new favorite season. I'm not sure. I'm sure fall will suck me back in with its apples, pumpkins, and crisp weather. But for now, I'm welcoming Spring. Spring's rebirth and renewal. Spring's sunshine.
