If you were to read my blog about bringing up a child with special needs, you might think that I seem pretty well-adjusted. I am… now. If I had started writing it when my son, Max, was first born, it would be an entirely different blog. It would be a blog filled with anxiety and all sorts of dark thoughts. It’s taken the passage of time for me to get to this better place, but I also happened upon some things that really, really helped:
• I aired my concerns. With friends, with other parents of kids with special needs, with people in support groups, with a therapist. Now we have blogs, but there’s nothing like having a real-world conversation to get the grief out.
• I’d force myself to remember that even if I felt sorry for Max, he wasn’t feeling sorry for himself. He didn’t know that he was having trouble picking up the rattle or toy truck because his hands were tight from the cerebral palsy he got due to a stroke at birth; he just knew to keep trying.
• I’d think about how much worse things could have been. This was a total shift in perspective, because for the longest time all I could think was, Why did this happen to us? But when I’d consider the far more awful things that could have happened, I’d suddenly feel a lot better about the present.
• I found ways to savor my son. I’ve written before about how my fears about what the future held for my Max would sometimes overshadow the fact that I had a delicious, adorable baby. So I’d snap photos of him. Lots of photos. I’d order prints and meticulously put them in photo albums. I made photo murals and hung them around the house. I’d order photo calendars of Max for my husband and family. I had a photo gallery of Max in my office. The photos brought in the joy of having a child, the joy that can get so easily squashed by all the medical drama.
• I looked for the best possible experts. I researched doctors and talked my way into appointments, shamelessly throwing myself at the mercy of secretaries. I made sure Max had experienced Early Intervention therapists. If someone wasn’t working out, I’d go to bat to find a replacement. I fought the insurance company to pay for more therapies. And we tried alternate stuff, too, like craniosacral therapy and hyperbaric oxygen treatment. I was determined to give Max every possible chance at succeeding in life. Taking action was helpful for me, too; I felt like I had some control over a situation that seemed terrifyingly uncontrollable.
• I forced myself to quit paying attention to major milestones. No more looking at the developmental books, no more updates from BabyCenter. I was only torturing myself by comparing what Max “should” have been doing.
• I learned to celebrate Max’s small, everyday achievements, like grasping a spoon or saying a new sound.
• I also learned to hunt down the happiness. If I was bummed out, I’d get in touch with one of Max’s therapists and talk about the good things he’d been doing. That always gave me a lift. A little wine never hurt, either.
• I finally got to acceptance. It came slowly because it kept head-butting with hope-my hope that Max would completely prove the doctors in the NICU wrong. As time went on, and it was clear Max had challenges, I readjusted my hopes. I was no longer looking for the miracle; I just really and truly hoped that Max would keep on improving. And he has. As our saint of a neurologist has always said, “Don’t look at books, don’t look at medical records, don’t look at charts. Look at your child, and what he’s doing.”
And that’s how I have gotten to this place. If you regularly read my blog, you know I still have the sad moments. I cry on occasion, including when I write posts like this that take me back to the early years. I still have a streak of denial; I have Photoshopped the drool out of photos. I have freakouts about Max’s future. But I have come a long way, both in years and in my mind. I’ve learned. I’ve adapted. I’ve adjusted.
I am a mom of a very wonderful kid who has some challenges, a kid whose smile heals me every single day.
Ellen blogs daily at Love That Max.