May 15, 2006

Yesterday, Mother's Day, was especially memorable. Danny presented me with a necklace he'd made and breakfast in bed. Matthew wrote a card that made me melt. Then, together with my mom (picked up from the rehab facility), Jon's mom, and my Aunt Edna, we all went to lunch. And, to top it all off with a surprise, my sister's baby arrived three weeks early - Miles Freilich, named for our dad. Congrats to Sara & Steve in Providence!

I haven't had much energy to blog these past few weeks because we've just been so emotionally and physically exhausted. We travel up to Hopkins every Monday for a clinic visit and bloodwork. Over the past few weeks, Matthew's also had a follow-up spinal tap and MRI. Thankfully, there have been no surprises.

I hope I'll get to the point in life where I don't dread Mondays. The Hopkins visits are completely draining. It's partly the anxiety of having to undergo the medical tests and await the results. But it's also the stress of dealing with the impersonal clinic environment and the indignity of being processed like a number. We are fortunate to be under the care of some extraordinary, caring professionals. But, too often, we have the experience there of being ignored, treated rudely or, in the worst cases, severely disrespected. It usually takes us until Wednesday to get over the Monday experience. To help us cope with Mondays, I've taken to wearing an amulet - a special pair of earrings which Jon gave me years ago. They're silver and stamped with the Native American sign of a bear claw. It's an inside joke between Matthew and me. I'm the Mama Bear protecting her young. Watch out!

Our major preoccupation these past weeks has been Matthew's hearing loss. We've been active on many fronts: going back and forth to the audiologist to get the best possible hearing aids; getting second opinions about possibly ameliorative treatments and cochlear implants; starting aural rehabilitation therapy/speech reading (formerly called lipreading) and practicing these skills at home; submitting paperwork to the county school system to have Matthew's educational needs assessed (although we have every intention of remaining at JDS); researching products (like vibrating alarm clocks and amplified phones) to make Matthew's life easier; and networking with all kinds of hearing loss professionals, community folks, parents & teachers who can serve as resources for us. Special thanks to those of you who have helped us in tracking down and following up leads.

Matthew's doing an amazing job of adjusting to his disability. He's had ups and downs, but on the whole is accepting his loss and is determined to move on. He is working hard to catch up on his classes and pass 9th grade. We have appointments with three different tutors, each twice a week, plus additional visits in & out of school for tests. It's a demanding schedule and it feels like we're on the road all the time.

One of the highlights of the past few weeks for Jon and me was watching Matthew stand up and talk, by invitation, before the local Make A Wish chapter. He spoke about his experiences over the past year:

"I've overcome my fear of needles (ha!), met some famous people, and been spoiled rotten. But also I've learned an endless amount about myself; I have a much better confidence in my own strengths and I'm more grown up now. Also I have learned a ton about my family, my friends, and about human nature."

He also talked about how he decided upon his own "wish":

"My mind dipped into different visits with Red Sox players, famous musicians, and lazy days on sunny beaches... After a couple of weeks, I came to the conclusion that I did not want to meet anybody famous because I had no assurance that it would be a good experience. I didn't want to go on a trip because I figured that we could always go on a trip when we felt we needed one. Also, all this hospital time put me way behind in schoolwork and I didn't feel like I could really afford to take time off. I realized that I did not want to pick something that would just start and be over with before I knew it. I wanted something I could have and use over time, maybe my whole life. What if I could have a recording studio in my basement?"

In fact, this was the wish that he requested and Make A Wish delivered last December, just before Matthew entered the hospital for his bone marrow transplants. Now that he's home, he's enjoying learning how to use the system. Thankfully, even with his impaired hearing, he's still able to play the guitar and sing.

Danny seems to be doing well. He's busy with school, soccer and baseball. The weekends are chock-full with his practices & games, and we all love watching him play. He's especially looking forward to tomorrow when we all head to Camden Yards to watch the Orioles play our beloved Red Sox.

Jon & I are very tired and very nervous, but just happy to be all together and well under one roof. That's the news for now...