Minefields

This time of the year is an emotional minefield. Back to school time and Hillary’s birthday. The stores are packed with cute outfits for an almost 19 year old to love, but I’m looking at the stretch pants, wondering if they’ll stretch enough to go up and over the diaper easily. I’m looking for t-shirts without a wide neck or scoop neck. I look in the misses department and find the styles suitable for her are in fabrics that are better suited for me. It’s simply the reality that we have, but it still cuts emotionally. It was easier when she was smaller to find appropriate clothing for her. She can still fit into a girls extra large, but it would look silly on her. I try to keep her relevant to her peers, giving her the dignity she deserves and the chance to blend in as much as possible. I don’t want her to be known as the girl who dresses funny. Recently I came across a company that makes waterproof clothing protectors that look like a shirtfront. I prefer these for school and outings instead of bibs. Again, her dignity is important.


Then there is the matter of Hillary’s birthday. One more emotional mine field for me. What do you get someone who can’t tell you what they want, and who’s hobbies include playing with her bead curtain, slinkys that never wear out, and a tether ball toy? New toys end up collecting dust, as she has no interest in them. CD’s perhaps, but honestly she seems just as happy with the radio as with a CD. Books on tape (or CD)? Maybe, but truly she seems as happy with the radio as with a recorded book. She enjoys the gifts all piled on her tray, brightly colored papers and gift bags all crinkly with tissue paper and ribbon. Her interest, however, wanes once the gift is out of the wrapping. Sometimes I’m not sure what I am giving the gift to her for, Hillary’s enjoyment, or my conscience? I don’t know what the answer is. I just know that occasions such as these unbalance me emotionally. I’ll still invite family and some friends over for a birthday party; we celebrate everyone’s birthday that way. Another year survived is certainly cause for celebration with cake and ice cream, music and laughter. I’ll take some goodies to her class at school so they can celebrate with her as well.
 I’ll get through this emotional minefield just as I do every year.
At some point in time I’ll learn how to deal with it a little bit better, I’m sure. For now though, I’ll muddle along through back to school and birthday shopping, and recover my equilibrium in time for the next minefield on the calendar--Christmas.

She Rides the Bike

At night while she sleeps she rides in her dreams. Her friends and family cheer her on as the scenery slips by in a blur. She feels so free. Pedaling, pedaling looking around, taking it all in. Occasionally she stops to catch her breath, to accept compliments, to have her picture taken but then she is off again--pedaling, pedaling……….




I imagine this is what my daughter, who has Aicardi Syndrome, dreams about as she sleeps peacefully snuggled into her bed. Weekdays start too early for her comfort, as is the case with most teenagers. Once up, she’s happy to be off to school. She’s well known in the school, and sought after as a companion. She enjoys learning, and loves the noisiness of gym class, and the halls during the change of classes. Assemblies and field trips are a special treat. She’s competitive and likes to win. Ensconced in her wheelchair she goes through her day. But a couple of days a week, she gets to ride the adapted bike during physical therapy. It’s hard work for her, but she loves it. The freedom of propelling herself around the halls of the school must surely be a relief. She goes slowly to be sure, and needs help to keep her hands on the handlebars. Occasionally she needs a push to get started but makes a valiant effort to keep going, looking around the whole time. In warmer weather she goes outside for a ride. How different everything looks from the seat of the bike! Even the breeze feels different, for instead of being only on her front and the back of her neck, it wraps around her torso and legs and feels more refreshing. As she goes around the school, those who see her call out her name and cheer her on. She knows she’s accepted and valued as part of the community. At the end of the day she is tired, but happy.



My daughter cannot tell me how she feels with words, but I know by the look in her eyes and the expression on her face. I don’t know for sure what she dreams about. I like to think that in her dreams she rides the bike…….

A DIFFERENT DRUMMER

"If a man does not keep pace with his companions, perhaps it is because he hears a different drummer.  Let him step to the music which he hears, however measured or far away." -- Henry David Thoreau

     I hear a different drummer.  Sometimes I think that I hear a different instrument!  Sometimes it's cymbals, sometimes a triangle.  Occasionally the beat and sound are similar to other's drums, but often the beat is different.  Waltz-like when others are rocking out, disco when others cha-cha, march like while others ballet.  Every now and then the beat of others drowns out mine and I dance along with them, although not quite in time.  No one seems to notice when I'm slightly out of step.  When my dance is different, then they notice--often they don't understand.  It can't be explained.  Need not be explained, simply accepted. Maybe it is accepted, but I'm too caught up in the rhythm to notice.  I like my beat and my dance.

     Take my views on children.  While other mothers were crying into their tissues on the first day of school, I was smiling, waving and saying, "a few hours free, what shall I do?"  My children were going to be home in a few hours, so why should I cry?  Perhaps because of my unique experiences of motherhood I understood sooner that when normal things happen, it is good, it is to be celebrated and not mourned.  Even though I do miss my oldest, she is growing up according to "plan".  Teach her well, help her to do her best, and send her on her way to becoming independent with a few guiding words and helping hands along the way.  This is the way of the "normal" world.  I also have the other end of the spectrum, the child who will never leave, never be capable of self-care or true independence.  Still, she needs to have some separation from me so she can realize her greatest potential.  Here again, I am not like many of the other mothers I have encountered.  I do not hover, micromanage.  I ask only that others do nothing to hurt my child, and allow her to build a relationship with the world as best she can on her own terms, and help her along the way.  The best I can do is to give those who are with her when I am not the information they need to keep her safe and healthy and happy.  She also hears the beat of a different drum.

I Try

I generally try to focus on the positive things that are part of my life.  Sometimes, though, I feel like I need to acknowledge the not so great things.  Lately I've been feeling like those not good things are intruding themselves into my thoughts too often.  So here I share some of the less good, dare I say crappy things that are part of my life with Hillary.

18 + years of one-sided conversations with my child, trying to decipher her cries, grunts, moans, squeals, and whimpers.  Some days I try everything that's worked in the past, checked everything I can, and still am left guessing.

22 years of changing diapers. (I'm counting the few years from my first child in that number)

Constantly worrying that the insurance will deny coverage of supplies or treatment for my daughter, and the fight that will ensue over phone, fax, and mail.

Hearing people us the "R" word and knowing they find nothing wrong with it.

Trying to get my daughter in her wheelchair into buildings and trying to get through crowds with her too.

Meeting friends or going out with my husband only after making sure my daughter will be or is cared for--she can never be left alone.

Knowing that there are people who refuse to work with my daughter.

NEVER having a day off from my main job of caring for my daughter, even if I'm sick or injured.  I've even put her on the bus, gone and had surgery, gotten home before she got home from school, and still fed and medicated her at bedtime.

Tomorrow I'll go back to focusing on the positives, and I'll appreciate them so much more after acknowledging the negatives today.  If we never felt sad, how would we know how good happy feels?

Filling Out Forms

If there’s one thing I can’t stand doing (there are actually many things I can’t stand doing) it is filling out forms pertaining to my daughter. It’s been almost 19 years and I’m sick of answering the same questions over and over. Many of the questions get the old N/A in the blanks because they don’t apply to Hillary’s abilities. The past couple of months I’ve had a number of forms to fill out, and I kind of feel sorry for the people who have to read them because I’m not taking care to write legibly. I’m losing patience for this stuff!

When Hillary was an infant, there was still a lot of hope that she wouldn’t be too far behind her peers. Even with her diagnosis of Aicardi Syndrome we felt that her chances of being only moderately developmentally delayed were at least 50/50. HA! Always the optimist, we went from specialist to specialist, filling out forms, convinced that someone would find something that could be “fixed” and she would begin catching up. Even though her pediatrician kept warning, in his kindest manner, that the gap would get larger the older she got. I loved Dr. Berger, he was always so supportive. That is a subject for another day.

By the time she was about 6 months old it was apparent that things weren’t going quite as well as we had hoped, but with a referral for Early Intervention Services, all things still seemed possible. More forms! All those questions about birth weight, length, my pregnancy, apgar scores, milestones, likes, dislikes, etc, were answered in my best handwriting. Then there were the “intake interviews” where you get to sit there with your child talking to the staff of therapists, nurse and social worker and answer all the questions again in person. Fun! As things went along and we found out about different assistance programs, (known in the political arena as “entitlement” programs), there were more forms! These generally included requests for financial information. As if it’s not enough to constantly report your child’s shortcomings, now you have to look at your tax forms. I was (and still am) always torn between hoping we qualified and being afraid we’d qualify. It’s a double edged sword.

Of course, I would be remiss if I didn’t mention insurance forms. They’re fun, too, but in a different way. They don’t usually need much detailed information, but every now and then they want to be sure that our daughter is still disabled. I wish they would have just looked up Aicardi Syndrome, but I suppose they have a policy or something about checking to make sure they’re not being scammed.

When Hillary turned 3 it was time to get her into the local school district. Yay! More forms and another round of interviews with social worker, therapists, teachers, and learning specialist where we went over the same information again and again. Then we had to look at programs, and once we decided where we wanted Hillary to go there were forms from that school. And so it continues.

Lately we’ve been applying for programs available to our daughter once she turned 18, and taking her to a new doctor and wheelchair clinic. I confess that sometimes when I’m filling out forms it’s late in the day (evening) and I’m a bit punchy. So it was that by the time I started filling out the doctor’s form I was not in the proper frame of mind. Questions such as: “Were there problems during your pregnancy?” and “When did your child first roll over?” just about did me in, and when I saw the one asking for her apgar scores I kind of went crazy and wrote the first thing that came to mind which was “I don’t remember, it was almost 20 years ago!” And honestly at this point I don’t believe it matters. It doesn’t matter now why Hillary is the way she is. Just treat the current problem and be done with it. I do understand that the doctors need this information in the interest of science and not missing anything, but for this parent the point is moot.

So that’s the latest thing about being the parent of a special needs child that’s bugging me. I wonder, why can’t they just have one universal form that I could fill out once, update occasionally, and e-mail to the doctor or agency that needs it? It would save me from being hit in the stomach with everything she is not. I prefer to focus on who she is