Road to Diagnosis, Part One

     When I had my first baby, I was hypervigilant about milestones. What to Expect the First Year had a permanent spot on my coffee table, and it was probably the only book I read that year. That may have had something to do with the fact that I had new-mommy brain, which severely limits the ability to remember people's names, much less follow plot lines. My now 8-year-old Ben, being the typical All-American kid he is, hit them all at exactly the right times. I found comfort in that, and spent my energy freaking out about other things, like recording bowel movements in a journal, which I've saved for him. I'm sure he'll treasure that someday.

     Every day, I would rush to pick Ben up after my half-day of teaching, to nurse him so that he wouldn't have to drink from a bottle. I would ask my in-laws, who were kindly providing many hours of free childcare weekly, to only feed him one pumped bottle during his four-hour stay at their house, reasoning that I nursed him right before I left, and would do so again when I returned. Even if he was crying. Even though they had a good supply of frozen breastmilk for such an occasion. Control freak much?

     When I had Mary, things were different right away. She had to return to the hospital shortly after her initial homecoming, for dehydration and jaundice. It was thanks to their lactation consultant that we discovered that Mary had a shortened frenulum (the thing which attaches your tounge to the bottom of your mouth), and couldn't nurse properly. She had it clipped the next week, but she had fallen victim to nipple confusion. I still blame the special care nurse for that one - when a mommy says wake me up for a feeding, you do it. You don't say, "Oh, you needed your sleep." You don't give a bottle full of Enfamil to a breastfed newborn. You wake up the frickin' mommy! So, nipple confusion, plus my poor pumping output, meant I now had a formula-fed baby.

     NOTE: I have nothing against formula feeding. I am simply cheap.

      Since Ben was breastfed, I was used to a hungry, cranky baby every two hours. Mary was placid, docile, and super sleepy. Frankly, it was a godsend, considering I had an active toddler to raise as well. Like most second children, Mary had fewer pictures taken, no poopy diaper diary, and I was far less inclined to keep track of milestones this time around. I congratulated myself on being a more relaxed parent, and simply enjoyed my baby. Even though she wasn't progressing much, I reminded myself that all babies are different, and that she would get there in her own time.

     She didn't.

     My mother and sister, both teachers, gently suggested that I should have Mary evaluated by Early Intervention. I balked, because nobody wants to hear that, especially from older, more experienced mothers to whom you desperately trying to prove your competence. Mix in some latent sibling rivalry, and that's a recipe for resentment and hostility. Lord, they were brave to confront me.

     And so, with Mary eight months old, we began our journey to a diagnosis.
    


     

Regarding the Title ...

     When I tell people that Mary is disabled (which I do way more often than necessary, but more on that another time), I get a range of reactions. My favorite has always been "But she's so pretty!", as if disabilities and attractiveness are mutually exclusive. Other times, it's said to imply that Mary's beauty is a consolation prize, which admittedly, it is. Her round cheeks, long blond hair, blue "Disney" eyes (my sister's term), and perpetual smile go a long way towards helping Mary in her interactions with others. Being pretty makes life easier for anyone, and Mary can use all of the help she can get.


      I keep Mary well groomed and in coordinated outfits as often as possible. People comment on what a fashion plate she is, and admire her hairstyles and earrings. Frequently, I see other disabled kids with utilitarian wardrobes and haircuts, and I wonder what their parents are thinking. Yes, my life would be easier if I didn't have to struggle with tangles and scrub out the endless food stains on her clothes, but what fun would that be? If I let Mary go through life unadorned, am I saying that she's not worth the trouble of being dressed well? Making Mary pretty sends a message to the world, and to her teachers at school,  that she is loved and cherished, even if she can't fully appreciate it.

     Or can she? When I took Mary to get her ears pierced at the age of 2 (I know, kind of tacky, but I couldn't resist), I showed her the choices for earrings. Though non-verbal at the time, she immediately made the sign for "I want." She barely cried during the piercing, and I think she was only protesting being held still. And today, if you ask her who the most beautiful girl in the world is, she loudly proclaims "Me!" She chooses her outfits and earrings each day with delight, and claps when her hairdo for the day is finished. She may just be glad that I'm done torturing her tender scalp with a hairbrush, but I choose to believe that she takes pride in how she looks.


     Pretty counts, people.
    

Welcome friends and family (because I'm sure that nobody else is reading this)!

     When I declared my major in college, I deliberately chose elementary education, not special ed or dual certification. In my suburban high school, the kids I knew who received special ed were learning-disabled. As far as I could tell, all that meant was that they didn’t have to meet deadlines, profited from selling their Ritalin, and cheated on tests with the help of their “readers” (OK, Tommy, your choices are a, b, CEEEE, and d, write your answer now!). I did not want to deal with whiny parents who claimed their child had ADD (yeah, I'm old, I predate the H), when really they were just suffering from the withdrawal symptoms of being separated from their video games for six hours a day. As I continued my education, I became more confident that I did not want to spend my days with non-communicative, combative or emotionally disturbed students. Of course, when I actually became a teacher, I had all of these types of students and more,  without the advantage of a diagnosis and the support staff which would accompany it. As a cocky undergrad, I was certain that I could avoid special education at all costs. 
     Then I had my daughter, Mary. And from the time she was eight months old, my life revolved around doctor’s appointments, service coordinators, and in-home therapy.  By the time she was two, a therapist was in my home every day of the week, sometimes twice a day. I was spending hours online, learning about her disability and looking for a connection with other families. Any conversation I had eventually came around to Mary and her syndrome. Like it or not, I was as involved in special ed as anyone could be. 

     The platitudes state that God doesn’t give you more than you can handle, that I was specially chosen to be Mary’s mother because of my strength. I have a slightly different perspective.

     God is funny.

     Only a God with a wicked sense of humor would give me a child that was the antithesis of what I’d wanted for my life. I never saw it coming, like any great practical joke. And before you think I’m a horrible mother, know that I love and cherish my Mary. But I am not one of those parents who say they wouldn’t change a thing about my child. You know, like deaf parents of deaf children who refuse to get them cochlear implants because it’s not part of their “culture.” What a load of crap. I would give Mary normalcy in a heartbeat.

     Yes, normalcy. Just because the p.c. army says “differently abled” or “intellectually challenged,”  I won’t pretend that Mary is just different. I won’t call her the r-word, either, but she is, to put it simply, disabled. It is my job to maximize her strengths and accommodate her weaknesses, not deny them.

     I’m no longer angry about Mary’s diagnosis. I’ve been through the stages of grief, excepting bargaining. I never really got that one. What does one offer God in exchange for new DNA for a child? Jewels? Cash? Animal sacrifice? I’ve accepted it and gotten on with our lives. However, I’m not going to go around forwarding inspirational quotes to my friends. I’m going to be honest. Raising a disabled child is a equal parts tiring, frustrating and hilarious, with a dash of wistfulness for what could have been. It’s very much like raising a normal child, except that people think you’re a frickin’ hero. That’s a nice perk, though undeserved in my case.

     There is a poem that is often given to parents of disabled children called “Welcome to Holland”. The writer compares raising a disabled child to planning a trip to Venice, but arriving in Holland instead. The main point is, you should go with it and enjoy the tulips, even though you were expecting gondolas, and stop mourning your loss. The author is right, but this kind a Hallmark-y schlock drives me nuts. Parenting is trench warfare and paradise rolled together, and I refuse to get philosophical or maudlin about it.

     When I decided to write about my experience raising Mary, now four years old, I knew that I didn’t want to write in platitudes. I’m not here to give advice or hope or inspiration. I like to call my perspective “realistically optimistic.” I leave the door open for possibility, while accepting the reality in front of me. I maintain a dark sense of humor about life in general. Most of all, I don’t sugarcoat.

     I have another child, Ben, who is eight. He will be featured prominently as well, lest I be accused of favoritism 20 years from now in some therapist's office. My husband, Gary, will also be included, as well as a huge number of other important people in our lives.

     I’m tellin’ it like it is, kids. If I offend you, get over it. If you relate to me, then I’m glad you don’t feel alone. If you think I’m a parenting genius, you need to seek professional help.