What My Daughter Can Do

In November of 2011, three women came into my home, gathered around Fiona, who lay on a pink and green quilt several ladies from church made her, and assessed what she could do. Could she track a swirling light with her eyes? Could she turn her head toward the ringing of a bell? Could she lift her head up off the floor at least ten seconds when placed in prone position?

IMGP8151

She was five months old. She could do all these things. But she could not do other things. They took inventory of her fine motor, gross motor, expressive communication, receptive communication, and emotional and social development. Then they spent several minutes tallying up her score. Was she delayed? How delayed? In what areas?

I learned that my five month old was officially but just barely delayed in gross motor skills, and unofficially in fine motor skills, but on-target or advanced in emotional and social development and receptive communication. I was thrilled. Her first grades were, as far as Wolf-Hirschhorn Syndrome went, pretty good. The therapists and I then mapped out an intervention strategy (which, partly due to our governor’s slashing of funds, was minimal, but more on that in a future post) and all professionals and one parent signed the multi-copied form.

Every six months, Fiona is evaluated in this way. Can she make consonant sounds in successive order? Can she push up on her arms, hold four-point? Can she hold her own bottle? Can she sit on her own?

Until last week, she could do none of these things. Now she can sit on her own for minutes at a time. And this has been a great victory—that my 18-month-old can now sit unassisted, albeit wobbly and leaning farther forward with each half-minute, so that eventually she looks like she wants to taste her toes. It’s okay. She’ll get better and better at it.

IMGP9089

But even so, as the months go by, the milestones on the chart in The Baby Book (which I long quit consulting) are farther and farther from her reach. Kids her age are walking, speaking in short sentences, feeding themselves, and on and on.

There was time when I avoided learning what kids her age typically do. One evening at a restaurant this past summer, I held her in a booth, and my husband bit into his steak across from me, and an adorable redhead toddled by. She looked at all of us, smiled, and pointed at Fiona. “That’s right,” her mother said breathlessly behind her—she’d jogged to catch up to her kid. “Baby.”

I avoided doing what I’ve often avoided doing: guessing the child’s age. The little girl smiled and waved, and Justin smiled and waved. She laughed and toddled away. The mother followed, but before they were out of earshot, I heard the waiter ask, “How old?”

Then the mother said, “She was a year in June.”

It was enough to strip away even the simplest of armor I wear in public. I could not hold it together. My face flooded with heat. I looked straight into Justin’s eyes with a raw kind of panic. I wept at dinner.

Fiona was a year in June.

“What’s wrong?” Justin asked, but he already knew. “Her age?”

I nodded. I’d just seen the redheaded version of my child if my child had all of her fourth chromosome. If my child did not have Wolf-Hirschhorn. There she goes, toddling past the kitchen door and toward the restaurant bar and across all the mile-markers that the occupational and physical therapists know by heart. There she goes, marching straight for language and letter-writing and college. There she goes. Out of my daughter’s reach.

This kind of thinking—this evaluating my child based on what she can’t do—it will almost always set me up for sorrow. Even while I feel relatively accepting of her condition, there are still moments that strike me. Now that we live in Vermont, Fiona has had all new therapy evaluations, and last month, the speech therapist assigned her a communication level of an 8 month old. I didn’t know whether to celebrate or mourn. Wow, great for a WHS kid! Or, My God, ten months behind other kids her age. The “on-target” status I’d celebrated a year ago is now gone.

And this month, while reading aloud the three-page report outlining Fiona’s gross motor assessment, her physical therapist announced that she was “at a four to five month level.” We sat on the floor beside the therapist’s huge tote bag of toys, and I nodded. Yes, I knew this. And I pretended I was totally okay with this. I knew my daughter had made virtually no gross motor progress in several months, not the kind you could verify on a report. I pretended that hearing this from a professional was not in any way like swallowing a stone. “She’s more advanced in the other areas,” I said, rationalizing that gross motor was her most challenging developmental category, which was true, but which also allowed me to pretend that stone wasn’t catching in my throat.

Despite how much I accept my daughter’s condition, I expect these reactions for the rest of Fiona’s life. Yes, I rejoice in who she is. Yes, I see the gifts she offers the world. Yes, I acknowledge that these gifts come in a body that’s far different from most kids. But I also know that, from time to time, the reality of her developmental delays and disabilities will hit me. Not like “a ton of bricks,” but maybe like a small stone in the throat. Or sometimes like a whole bag of stones, right on the noggin.

But as Trungpa Rinpoche, Tibetan Buddhist master, once said, “Living with yourself is like riding a fickle horse.” On the very same day that I might find myself disheartened about something Fiona hasn’t learned to do, a few hours later, I find myself delighted because of something small she can do. This is not just a “feel good” exercise, not just an attempt to tint my lenses pink. It’s a better way to approach Fiona. As Temple Grandin, Autism self-advocate, recently wrote in this Take Part article, “Special educators need to look at what a child can do instead of what he/she cannot do. There needs to be more emphasis on building up and expanding the skills a child is good at.”

A few of my comrades on the road to parenting a WHS kid have posted updates about what their kids can do. Though they may look minor to a parent of a typically developing kid, to us they are exuberant lists of accomplishments, hard-earned feats for kids who are missing a hundred plus genes. So here’s a partial list of what my daughter, at 18 months, has accomplished:

  • She can roll all ways, and has been doing this since about 9 months old. She will sometimes use rolling to get herself places or to reach a toy.
  • She can pull herself up from lying down if you provide your fingers, and she has no head-lag.
  • She can bear all her weight on her legs, though she requires support for balance.
  • She can grab things with her feet, and kick with accuracy.
  • As of a few days ago, she can sit unsupported for several minutes at a time!
  • She is 100% orally fed.
  • She eats a variety of pureed foods, and also likes cottage cheese, yogurt, steel coat oats, butter, scrambled eggs, chicken, and mozzarella cheese. She requires someone to spoon-feed her these things.
  • She can feed herself pickles, orange slices, baby carrots, and anything of roughly that size. Depending on the consistency, she can sometimes gnaw off a bite with her front teeth (the only ones she has right now) and mash it enough to swallow.
  • She will gesture toward the food that she wants. When given a line-up of choices, she will study them for several seconds before choosing. She seems to differentiate well between the colors of the food, though carrots and sweet potatoes always throw her off—both orange.
  • She can mimic hand gestures, including clapping and the first gesture of “Itsy Bitsy Spider.”
  • She seems to know the word “Bang,” and will respond by banging on her tray table.
  • She seems to know several other words, though it can be hard to get her to indicate for sure.
  • Though she doesn’t produce any consonant sounds, and hardly opens her mouth to make vowels—something she used to do before teeth—she likes to mimic sniffle sounds and throat-clearing sounds, and I can tell she attempts to mimic the word “poop” when, um, the context calls for someone to use it.
  • She can use a radial palmer grab.
  • She can use an inferior pincer grab on puffs and other small objects.
  • She transfers objects easily from hand to hand, and will adjust them so that she can get them into her mouth better.
  • She lights up immediately when dance music comes on, and she has a pretty good sense of rhythm, which she exhibits by bouncing up and down or bobbing her head. (As I told Justin last night after a wedding reception, she may be missing 120 genes, but the extended Lanier family party gene apparently isn’t one of them.)
  • She will vocalize clearly when she wants something she’s not getting.
  • She can sleep through the night. She can nap for several hours at a time.
  • She likes to play with a variety of toys, especially anything you are playing with.

This is helpful for me—it illustrates Fiona’s progress—and it’s helpful for other parents of kids with WHS, who wonder what their kids might be capable of. But this “can-do” list isn’t quite the end of my post. Focusing on our kids’ capabilities is important, but it’s not the end-note in a life well lived. It’s only the flip-side of what sometimes causes me grief. She can’t do this, but she can do this! Well, what if she couldn’t do those things, either, Heather? Or what if she one day loses the ability to do those things? What if sudden seizures take away the developmental progress she’s slowly but firmly accrued? From time to time, by way of other parents and the medical battles that their kids fight, I’m reminded of just how precarious the health of a WHS kid can be.

So I would like to get beyond doing at all. And just appreciate her being.

It can be tough. Especially before they know about Fiona’s condition, mothers of a certain age—mothers fifty and under who were taught those milestone charts all too well—often ask me what Fiona can do. Is she walking? Is she talking? I’ve gotten this Fiona’s entire life. When she was four months, they asked, Is she rolling yet? At six months, Is she sitting up? (The answers then were no and no.)

Older mothers, mothers in their seventies and over, they never ask me these questions. I like to think it’s because doctors weren’t yet bombarding those mothers with developmental charts, but I might be inventing that. Even before they knew about Fiona’s syndrome, the older women at Justin’s church passed Fiona around and marveled at her sparkling eyes, her aware little expression, her probing little tongue. Oh, look at that! They said, and found new things to squeal over. These ladies delighted in my daughter. And in so doing, they taught me–a very stressed new mother to a daughter with a surprising new diagnosis–to delight in her. To forget about the milestone charts. To forget about the therapists. To just be with my daughter. Human being to human being.

“Here’s a ring,” I told one woman who said she’d watch Fiona while I ran to the bathroom. I handed the woman a small plastic ring. “For fine motor development,” I said, and wedged it into Fiona’s hand. We’d just started therapy, and I was in therapy overdrive. Therapy twenty-four seven. Therapy therapy therapy.

“Hah!” the woman laughed. “For fine motor development!” she repeated, as though I’d just been joking. The other women, half-preoccupied with squealing at Fiona, laughed with her. Who cared about fine motor development when they had Fiona to play with!?

I cherish this lesson.

IMGP9071

Advertisements

10 thoughts on “What My Daughter Can Do

  1. Oh, how I can relate to you. I commend you for taking the time to write it down. I know from experience how important all these milestones are. How most mothers don’t even know, but they do, you know what I mean? This last month or so has been difficult for me seeing my girlfriends who just had babies (ranging from 3-6 months) post about their chubby littles ones doing things that Rissa still has yet to master. At 10 months she is finally determined to roll. She sticks with the left side but she almost has it. I delight in hearing her grunt and squawk as she swings her hips over not realizing its her hands clutched at her chest that is preventing her from rolling all the way over. Over the last week or two she tolerates tummy time much better, like she is interested. Where before she was usually just pissed to be forced to be put in that position. I also know what kind of victory it is to have her eating orally 100%. I felt victorious when she came home from the hospital the first time. Determined to show those doctors that with a mothers patience and determination she would soon be gaining the proper 20 grams a day to prevent any tube feeding. Unfortunately we lost that battle about 6 months ago when I had to go back to work and it wasn’t just me feeding her. We didn’t know for sure if she was experiencing reflux and she ended up hospitalized for a second time due to puenomina. However, I am a firm believer that things fell into the place the way they did for a reason. If I hadn’t needed daycare, aka help, because I had to go back to work I would have never found Jenna, my Rissa Bears “other mother”. I apologize for my rambling…part of the reason I haven’t actually startedt writing yet. But Jenna has been such a blessing for me, in appreciating and sharing the stresses of being a parent to a child that gets the awkward silence when someone asks “How old?”, because at 10 months she still has head lag and poor head control. As always I’m delighted to read your blog, it slows my mind down long enough to write about her.

    • Dear Heather: My name is John Primerano and I am a friend of your mother’s. She sent this to me.. I have known your mother since high school and I am sure you have heard my name as you have autographed your book and your book of peoms to me. You mother has been a tremendous boon to me since we reconeccted two years ago as I have been going through a tough time both professionally and with family. If not for your mother, I don’t know where I’d be emotionally right now. So much for background. I certainly will not pretemd to know , as a parent, what you are feeling besides what you write and I supposse I never will now, But I know one thing: It’s not what Fiona should be doing or what she can’t do, it’s what she CAN. I don’t mean to be presumptuous enough to give unsolicited advice to someone I’ve never met, but your mother means alot to me and I just wanted to say to you, no matter how tough it gets emotionally, keep punching. Remember, no fighter ever lost a fight by being knocked down, only by STAYING down. I’m a great believer in taking on the odds and working with ALL I have, not What I have. I believe you are the same type of person. I keep you and Fiona in my prayers and hope you will look at the glass as always half full, that you can take the punches and counterpunch and never give up or give in. I KNOW you will. Sincerely yours, John Primerano

  2. This is wonderful Heather.
    Justin and you are wonderful and along with Fiona. Don’t worry about being on the charts, just enjoy her always. Play with her and do the things you have to do.Let others help- like church ladies to give you a break.They love her too.
    Love her always and be kind to yourself, she is the best thing to happen to you!
    Love,
    Aunt Louise

  3. That beautiful baby was destined to come into this world, and one of the strongest, smartest, and most caring women was chosen to be her mommy. She is so fortunate for all that you do and all that you are, and her smiles beam with gratitude. Merry Christmas to all of you and thank you for continuing to share your story.

  4. Heather,

    Thank you so much for this post. I am not a parent of a child with WHS, but I am a nanny to one and she has just stolen my heart. I love to read about the other little ones on the WHS website and your daughter is absolutely darling.

    It has been so easy even for me to want to see her do more and sometimes I get so caught up in “we have to do this and this and this therapist just said that and what if I’m not making the most of my playtimes/therapy time with her, etc”. And I get so caught up in wanting to see her do that I forget to see what she can do and forget to recognize the amazing person she is and just letting her be that amazing little girl.

    So thank you. I admire all of you at the WHS site and your children are amazing. My life is changed and so much richer by being a part (even if in a small way) of it.

    Merry Christmas to you all!

  5. Fiona sounds like a wonderful baby. I am so proud of her AND your accomplishmnets. There is no way she’d be able to reach any of them without the help of you and your family. My son, Nathaniel will be two 1/8/13. He still cannot sit up, attempt to stand, hold a cup, or feed himself. Youare very lucky that your precious little one could do that at such an early age. I know he will do it……the question is when??? Time will only tell. Good luck to you and your family.

  6. Good lessons, and as a fellow teacher, I ought to know the importance of being a good student. Yet, Kaylee is twice Fiona’s age and doing half of what Fiona is doing. Practicing the art of that kind of absolute acceptance of the syndrome is hard, almost impossible for me, some days. I finally got past the coping strategy of telling myself that every ‘typical’ little girl was going to grow up to be a stripper, so it was okay if not better that my baby has WHS, but it is a daily struggle for me not to get emotional at seeing children Kaylee’s age who are doing all that I dreamed for my daughter– dancing, signing, twirling, eating, acting with purpose and intention. Much of my inner struggles come from having not just 1 but 2 daughters with these exceptional cognitive, medical, and developmental struggles. All my life, I dreamed of those mother-daughter moments:prom dress shopping, planning weddings, mani-pedi spa days, and long conversations about life. I will not experience those with either girl, and although I know that had they been born without issues, I might not have had those experiences, knowing the possibility is not even there takes its toll. I believed I had been given a second chance with Kaylee to live those dreams…instead, I became more entrenched in a life centered around therapy and doctor appointments. CHOP security guards know my name. I swear, I think that I suffer from PTSD-like symptoms because of the misreading of my amino. Because of that geneticist’s mistake, I was unprepared for the diagnosis. It is different than choosing not to test– you go into your pregnancy accepting whatever comes. Likewise, when you know in utero that issues exist, you mentally and emotionally prepare yourself. I chose to risk an invasive procedure to reassure me that all was okay, so getting a false negative has had implications beyond just dealing with the life filled with specialists and medical issues. Case in point, I write this as I spend my waning days of my Christmas vacation in a hospital, waiting for tests that will reveal nothing extraordinary but are “precautionary”, and because of the system and liability, we are trapped here til they release us, probing her with needles and exposing her to other illnesses that risk her health even further. i wish you could bottle up some of your positivity and send it here to Jersey; my greatest fear is that I will never be able to see past what she cannot do to get to a place where, deep down, resentment and anguish possess control. If making a list would help, I’d do it, but I have a feeling that it would only make me aware of how short a list of accomplishments it is for a 3year old — even a 3 year old with WHS.

  7. Than you for your stories. My grand daughter Grace has WHS she is 18 months and slow developmentally. She is also just lovely. I share your sadness at the things that may never come her way but she is surrounded by love and that is what we all want for out children. Grace is very pretty and able to play with us and although she does not sit unaided yet I am sure that she will, she has had in this last week a new baby sister Rose, who i am sure will teach her more than mere adults can.

    Some days I have a little cry at the sadness of it all, i am sad for my daughter and her partner but Grace seems so happy all the time,,her life will be different but she will achieve things, she has been swimming and to the park, she owns a kitten, her parents will make the garden nice so she will know nature.

    She has stories read to her, toys to play with, songs sung, she enjoys kids television and being danced with, just as I am sure your children do. Many days the sadness hits me but every day I love her.

    Who knows what her thoughts are. I believe that some old souls return to this world as people like Grace just come among us to remind us all what caring and being cared for is like..,,,.loving and being loved. There isn’t anything else really, mile-stones are nothing.

  8. Thank you, THANK YOU!! for this post! I so feel the same way as you described. My son is 14 months, and very similar to your Fiona in description. It is great to read that others feel the same like I do – I cried at his christening last month for the same reason you cried in that restaurant. The toddler was even red haired…
    Thank you again, take care!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s