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The Help I Never Wanted

It's rush hour in New York, and I'm in a crowded train. The doors slide open and there's a blind man standing in the entrance. People swarm past him as he thrusts out his walking stick and makes his way into the car. A woman jumps up. "Take my seat," she says, and he does.

As I watch him, I wonder what it would be like to be blind and have to rely on others for help like that. Then it dawns on me: I am a person who relies on others for help like that, the guidance I get along my journey of bringing up a child with disabilities.

I'm mom to Max, 7. He has cerebral palsy, due to a stroke at birth (yes, babies can have strokes). Doctors told us he might never walk or talk, that he could have hearing and seeing problems and mental retardation. As you can imagine, my husband and I were pretty devastated. I am a person who likes to take charge of things and make them happen. Control freak? Sure, you can call me that. But here was a situation where things felt out of my control. My baby had irreversible brain damage.

I did what I could: I immediately enrolled Max in my state's Early Intervention program. He got out of the NICU after two weeks and at one month old he started getting physical and occupational therapy. He began receiving speech therapy at around six months old, aquatic therapy at a year. We also tried alternative therapies, such as craniosacral therapy, hyperbaric oxygen treatment and, last year, stem cell therapy at Duke University.

Therapy was a whole other world. Typically a person who always liked to figure things out on her own, I was suddenly dependent on these experts to tell me what my baby needed, to teach me to do the exercises that helped his tight limbs loosen up, to give me the hope I so desperately craved.

I also needed support like never before. Mentally, I was drained. I didn't admit it to myself at the time, but I was depressed, too. Having a new baby is never easy; having a baby at risk for serious challenges can feel like water torture. I'd watch him with an eagle eye 24/7, terrified that I'd see something "bad" emerging. I was filled with anxiety. I could discuss it with my husband, Dave, and friends, to some extent, but I didn't feel like anyone really understood what I was going through.

I was so grateful to my mother and sister, who'd come over on weekends and pitch in. They'd care for Max, hold him, and give me time to go for a drive or wander aimlessly around CVS (it's amazingly therapeutic). They'd bring me little treats, like chocolates I loved. They helped. For once, I was glad to accept it.

As Max got older, the help kept on coming. From his therapists. From our team of doctors. From friends, who'd share resources and a listening ear. From the blogosphere. And from the amazing Friendship Circle, in the form of both Sunday morning Torah Circle and the teens who came to visit us through Friends@Home.

Sometimes, their moms would give me looks of pity when they dropped their kids off at my house which would get to me—I never wanted to feel like a charity case. But I knew they meant well. And it was all for Max, who's had the time of his life doing FC activities and playing with the "big" kids.

As Max has developed, I've developed, too. I've learned that taking help doesn't mean I am weak in any way; it only makes me stronger. It means I can be a better mom to Max. And most important, it does Max a world of good.

Like that blind man I saw on the train that day, I am a person who needs some help.

And that is OK.


Reader Comments
Latest Comments:
Posted: May 11, 2010
Help I Never Wanted
I gave up my life and cared for my elderly mother who had Lymphoma. I was used to helping everyone else but with my mother I had to take a step back and evaluate what it meant to receive help from others for a change. I resisted at first then realized the blessing that others received by helping me as well as the blessing I in turn received. What a journey...my heart reaches out to you and I give you kudos for all that you have learned thru the process of what to many people would be total devastation. Now you are an inspiration!!
Posted By Cindy Leavel, Beaufort, SC/USA

Posted: May 6, 2010
Help
The bottom line is Max has got what he needed and as a mom you are the one who tokk initiative and did the right medication for MAX. Truely amazing work. You are most satisfied mom in the world right now.

But I must say, your beautiful country who cares for their citizen and all advanced medication in place can take care of all medical attention which is required by the citizens.
Posted By Shailesh Kumar V, Kolkata, India


 



By Ellen Seidman   More by this authors...  |   RSS Listing of Newest Articles by this Author
Ellen blogs daily at To The Max.

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