It may be that when we no longer know what to do
we have come to our real work,
and that when we no longer know which way to go
we have come to our real journey.
The mind that is not baffled is not employed.
The impeded stream is the one that sings.-Wendell Berry
Many of you have been following along with Micah’s journey with Kabuki Syndrome. What they don’t tell you about parenting a child with special needs (or any child) is that it is also a spiritual journey for the parents. I am continually being challenged in new ways to change my thinking, to take a different path. It’s incredibly humbling. I feel we are at a crossroads again with Micah and so I’ve been doing a lot of reflecting lately. I want to share some memories. This is long and far less poetic than I typically aspire to, but I think it is important to share the unedited side of life sometimes, too.
Micah was a planned pregnancy. We used an ovulation test and made a conscious decision on a specific day to try to conceive him. I remember saying to Andrew, prophetess that I am, “Would we be ready to parent any child? Even one with special needs? Because that could happen.” Andrew’s reply was something like, “… I don’t know… I think so. Yes, I think so.” That is still generally how I feel. I don’t know if I am really up to this, but I’m doing it anyway for love’s sake. God may give us more than we can handle at times but He also never fails to give us the love to meet the challenge. But believe me, this moment has echoed in my mind endlessly.
When Micah was born he was a normal size. 7 lbs. 10 oz. The only thing we initially noticed that was different about him was a tongue tie. It didn’t take long before we realized that Micah was struggling to nurse and to grow. For a long time he was in the 0thpercentile for weight, which doesn’t sound like proper English but is a real thing. We thought this was all due to the tongue tie. A different pediatrician might have diagnosed him failure-to-thrive but ours was very laisseze faire. I liked that at the time but now I look back with anguish at all my concerns that were glossed over. Now I know that almost all Kabuki babies struggle to grow and gain weight until puberty.
Despite the struggles, I was determined that this baby would be EBF, exclusively breast-fed. Because Breast Is Best. For months I fought against a dwindling milk supply. I tried every intervention I could, eventually resorting to an excel spreadsheet to help me track all the different things I was doing each day. Bowl of oatmeal for breakfast, check. Fenugreek supplement three times a day, check. Rigorous pumping schedule at work and two-hour power-pumping schedule at night, check. I even taught myself to like beer which I had previously been averse to and drank a Guiness each night while I power-pumped. I attended La Leche League meetings in person whenever I could and was an active member of three or four Facebook breastfeeding support groups. I worried constantly about whether Micah was going to have enough milk for the next day. Micah cluster-fed all night. He literally ate every 90 minutes for the first 10 months of his life. Andrew used to call me the all-night, all-you-can-eat buffet.
When Micah was 10 months old I noticed a sudden drop in my milk supply, which sent me into a panic. I called a lactation consultant, which lead to a very unexpected realization that I was pregnant again. Now I was faced with a real problem in my eyes. My milk was drying up and there was literally nothing I could do about it. I couldn’t believe the cruelty of the idea that I had fought so long to exclusively breast feed Micah and now, only a few weeks before his first birthday (when he could safely have cow’s milk) my breast milk was quickly diminishing. I’ll never forget sobbing in the formula aisle at the Walgreens across the street from my apartment. I felt like such a failure. I truly was such a low point for me emotionally.
But then something unexpected happened. Suddenly, the spreadsheet that had ruled my life was gone. I continued to nurse Micah casually until his first birthday, but I didn’t have to worry about pumping or ounces anymore. When breastmilk was low, he happily took a bottle of formula. I saw for the first time how I had been driving Micah to the point of starvation and myself to the brink of insanity (to say nothing of my poor stay-at-home husband who had to deal with the crying baby waiting for mom to come home when the last bottle was gone.) I am so ashamed to even type that now. But yes, I believed so fervently that Breast Is Best that I let the perfect become the enemy of the good. Formula is good. It feeds babies. And while breast is best, fed is good. And sane moms and dads are good, too.
Our lives with Micah have become so much more complicated since those early days that I thought were more than I could bear. The path from that day at Walgreens to today lies strewn with so many little let downs and some big heart-breaks as we began to notice Micah falling behind and then were told he was much further behind than we realized. It took 3 ½ years to get an actual diagnosis of Kabuki Syndrome, which by that time felt like a huge sigh of relief to at least finally know.
Dr. Bruce Bueller was our first geneticist and a brilliant, eccentric genius. He sadly passed away a few weeks ago barely a year after retiring from practice. When he diagnosed Micah with Kabuki Syndrome he warned me sternly that people were not going to understand this rare disease. Teachers, therapists, and other well-meaning professionals were bound to misunderstand Micah. Because they likely won’t have ever heard of Kabuki Syndrome and so naturally they will perceive him as being like the closest thing they know. Autism, ADHD, or a more common genetic disorder were going to be the only categories the world would have to place Micah and relate to him.
(I could relate to this from my time working in pediatric rehab when the nurses’ report often would just be, “genetic syndrome” without bothering to name the rare and random specifics. After all, we figured, all those FLKs (funny-looking kids) are about the same. I promise we actually meant that endearingly and thought our kiddos were just the cutest. Dr. Bueller himself said he wanted to test Micah for genetic disorders because he is “extra cute,” which is the earnestly nice way of saying “abnormal facial features.”)
Dr. Bueller implored me that it was my responsibility to resist the stereotypes and overgeneralizations. “Teachers are going to see his hyperactivity and think he had ADHD but don’t be fooled, mom. You know what he has. He has Kabuki Syndrome. Therapist are going to see his speech delays and think he has Autism but don’t believe it! You know it’s Kabuki and these things just look similar. When they ask you to medicate, you say no. Those meds won’t change his genes.” This advice has stuck with me over the last couple of years, but tonight I am back in that Walgreens looking at formula except this time, it’s a bottle of risperidone.
We have exhausted every other option including behavioral therapy. We have even been doing the Modified Atkins Diet for the last 3 ½ months which is a still-experimental treatment for Kabuki Syndrome. The irony is not lost on me that my spreadsheet is back and more complicated than ever as I have meticilousy counted every gram of fat, protein, and carbohydrate Micah has eaten for 107 long days.
Yet Micah’s behaviors have just gotten progressively worse. He has terrible tantrums, violent outbursts. He has gotten to the point where he doesn’t enjoy the things he used to love. His anxiety and hyperfixation overwhelm him. His sensory processing disorder torments him with big emotions that he can’t control and regrets later. My six year old rages at me daily. He bites, hits, throws chairs across the room, and says horrible things I won’t repeat for his sake. He obsesses over the details of the timing of daily events such as meals or other activities. One morning I decided to count how many times he asked me when breakfast would be. I stopped counting when we hit 400 before 8 AM.
It goes without saying that I would prefer not to have to medicate my six-year-old. But have I let this ideal of “natural” and “behavioral” interventions become the enemy of other, more medical options that have the potential to make a bigger difference in his quality of life? I don’t regret the route we have taken to get to this point, but I can’t see anywhere else to go from here. We have come to a dead end. It’s a scary place to be. Part of me wants to stomp my foot and shout, “NO!” This isn’t how I wanted it to be. I wanted the best for my child. I tried my hardest to enforce my vision of perfection or at least some version of it. It doesn’t feel fair.
Nevertheless, for the first time in a while I’m actually feeling hopeful that things might start to get better. And I’m hoping that soon I’ll come to see the medications like formula. Because good can still exist in the absence of the ideal.
Stepping Back 