Posted in Government/Legal Matters Related to Special Needs, Recreation/Leisure and Special Needs

Blog #41~Back to the Future

Blog #40~Back to the Future

Candles blown out, presents opened and heads resting on pillows.  Another birthday week celebrated.  It’s was a big one for Al the 5-0 and Nick now 19 years old.  Only a day apart separates them. On the night of his birthday, Nick had crashed in his room, but he woke up and crawled in the king bed next to me.  I hesitated but pulled the covers up and nestled my cheek next to his.  I should have walked him back to his bed, but I wanted him near me. I needed to feel his warmth and hear his breath against my cheek.

Flashback to 19 years ago, Nick was held in ICU under oxygen and monitored.   I didn’t get to hold him or nurse him that first night.  I barely knew him. Small, helpless, holding on, I had no idea if he would be okay.  I wouldn’t be able to put my arms around him that night and it crushed me.

And so on the evening of his 19th birthday, I took in his breath and felt his limbs stretched long like a mature adult. I gazed at his features, the almond shaped eyes and tiny nose.  Similar they were, as if I could close my eyes and transport myself back to 1994.  And for a moment I did, to the time when I was in fear for my son’s health and whether he would be okay as the two nuns entered my room to hold hands and pray.

Exhale, I am back to the future. Slapped into what I should face.  But I don’t want to.  It’s an ugly web that is snagged with red tape. The maze of bureaucracy is daunting. First it was filing to continue to be Nick’s guardian (yes when he turned 18 we had to file to become his legal guardian since he can’t take care of himself.) Second it was to apply for SSI benefits that he qualifies for. Third, when your child turns 19 then you must contact DHS to have them switched from child Medicare benefits to adult. I only found out about this snafu the night before his 19th birthday, yikes!  I still don’t think I have my mind wrapped around any of this.

And on top of this, Nick is graduating high school in May and moving into a transition program until age 22.  I can’t say that I am ready to face the future after that.  Where will he live? Will he be taken care? Is he going to be safe and happy?  I attended a transition fair last week on the eve of Al’s 50th birthday.  I filled up my goodie bag with flyers, free pens, pads, cinch bags and sage advice. I came home and hit the wall, overwhelmed and that is where I stopped; until tonight.

After dinner out with Nick’s grandparents we came home to celebrate the birthdays. It is cold.  The heater went out sometime over the weekend. We kept our coats on as we gathered around the kitchen island.

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As I lit the candles on the chocolate cake for Nick to blow out, I had a flashback. While we cupped our hands around the steamy cups of coffee I spoke.

“Isn’t this ironic, here we are with no heat in the house.  It is just like when Nick was born and the ice storm had knock out the power. We didn’t know what we were doing while Nick lied there in ICU or whether he was going to be okay.  And poor Hank was so scared of the fireplace; that’s all we had to heat the house.”

Al pointed out something I had forgotten. “Mom you had the oven and heaters blaring on the stove top to keep it warm, remember?”

Oh how we were lost, Nick in ICU…. No power, and a new diagnosis of our son having Down syndrome…There is more to the story….. But you are going to have to wait for the book 🙂

Back to the present, I sit by the fire writing and try to stay warm.  I pictured little Hankie just 19 months old and scared standing at the staricase immobilized, pointing to the fireplace saying, “hot.”

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Birthdays bring a time to pause and reflect back and also look to the future. I don’t have any answers on Nick’s transition plan. In a way like Hank, I have been immobilized. I am trying to push the webs out of my face, and walk through but I feel a push and pull. I need to look to the future for my son.  He is 19 and like his brother Hank who is 20 and a sophomore at NIU, there is a need to let him spread his wings. But Nick knows no fear or evil.  I can’t help but feel like I am the only one who can protect him. That’s what is in my noggin this week. For now I will continue to pray for strength to fight my way out of this tangle.



Baby nick 🙂