Errol Milner Clifford 2006-2009
Errol Milner Clifford was born with a significant heart defect and a cognitive disability that prevented him from walking or talking. As we grieved the child we had anticipated, Errol’s full-bodied smile and irrepressible laugh turned our sorrow into joy, and taught us that many of the best things in life are unexpected. Inspired by Errol’s delightful spirit, friends, family, and neighbors rallied to support our family’s significant emotional, physical, and financial needs, through countless acts of selfless generosity. When Errol’s courageous heart finally failed him on December 23, 2009 we were left numb with grief. In these dark hours we listen hopefully for the echoes of Errol’s brilliant laugh. This blog is the story (starting from present and working back to Errol's birth) of the life and times of the amazing Errol Clifford.
Monday, October 29, 2007
Cary and Owen planted carrot seeds in the garden this year, and patiently watched them poke through the dirt and grow towards the hot summer sun. Towards the end of August, the young leafy carrots attracted a host of Swallow tail caterpillars. Every day, we would watch the beautiful caterpillars with their rings of green, black, and bright yellow, slowly eat their way down the carrot greens. The caterpillars were bulking up on carrots so they would have the strength to build their cocoons for their slow transformation into butterflies. We decided to bring one of the caterpillars into the house so we could watch its amazing transformation at close range. We read about the process and outfitted a glass bottle, equipped with a branch for the little guy to hang his cocoon on, carrot leaves to get him through the night, and a mini-bar for: you know. What more could a caterpillar want? Owen named him “Calla”. We kept vigil outside Calla’s house to watch him change.
Errol doesn’t grow on a straight line. He seems to take one step forward and then two steps back. A week ago we went to our pediatrician. I was thrilled when she told us that Errol had reached the developmental level of an eight month old. Errol’s being only ten months behind schedule was reason to celebrate! But this week, we took Errol to a different pediatrician, one who specializes in developmental delays, who painted us a different, less rosy picture. She said that Errol has developed to the point of a five month old (we lost three months in one week!) Sometimes I feel like we are moving in reverse, and I think that Errol is never going to grow up. Errol has taught us (forced us) to be patient. In fact, Cary says we aren’t patient at all, we’re just hanging by a thread, in limbo, waiting.
Errol’s big brother Owen is a very special child, himself. One of his most rare and wonderful traits is his active imagination. Owen loves (and demands) stories. It’s one of the main ways we communicate (that and break dancing). In Owen’s mind, the line between past, present and future is often blurred (I get that way after a few too many, but that’s a different story). Sometimes, the subject of the stories is his brother, Errol. “Daddy,” Owen will say, ”tell me the story about when Errol was big and we went to Africa.” Or, “Mama, tell me about the time Errol was bigger and we played together.” Owen’s just saying what we are all hoping, dreaming, and waiting for, but it tears a hole in my heart to hear him anticipating things that might never happen. These are hard stories to tell without choking on the tears.
The swallow tail has sewn himself into his cocoon, which hangs by a thread to the stick in his glass house, in our kitchen. We watch him every day as we wait for him to spread his wings and fly. He’s been in there for three or four weeks now, and we are beginning to wonder if he’ll ever come out of his cocoon, but we haven’t given up. It’s hard to be patient (or whatever it is), but day by day, we are learning to wait.
Friday, October 26, 2007
Humans have an amazing ability to adapt (if we didn’t our species would be long gone).
When Errol was first diagnosed with his syndrome, we were grief struck. The bad news came on my 38th birthday, and Cary and I cried and cried all day. We were devastated. We felt as if we had lost a child (which was silly, because we hadn’t, he was right there, the same kid he had been the second before the doctor walked in with the diagnosis). Still, we felt bereft. And then the next day, Errol was still Errol, (his diagnosis hadn’t changed him), and we were all fine, especially sweet Errol. He never skipped a beat.
There have been numerous studies on the emotional effects of dramatic changes in people’s lives. People who lose limbs (where did I put that damn arm?), for example, usually return to their pre-amputation levels of happiness and satisfaction, after only a few months (not that you should try it). And it’s the good along with the bad. Lottery winners, too, flush with millions of dollars, return to their baseline levels of happiness (or unhappiness) within a few months, just like the amputees. We humans reset quickly and make due. I guess it’s a survival response to a world of full of surprise and danger.
Nothing is for certain, not even a genetic mutation on the 16th chromosome. Last month, when Errol was undiagnosed as having Rubinstein-Taybi Syndrome, we felt like the rug (one that we hadn’t wanted in the first place) had been pulled out from under us. Sometimes the bad is better than the unknown (Celine Dion). The new news stung. We felt like our world (having been turned upside down once before) had been turned upside down, yet again (which despite the laws of physics, didn’t exactly leave us right side up). We were utterly distraught one moment, and then, all of a sudden, we were fine, and still are (Errol never blinked). Because we have to be, and humans adapt, but most of all, because no matter how you label him, Errol is Errol, and he’s the sweetest kid I’ve ever known.
We’re all undiagnosed, in some way, and we all get used to it.
Saturday, October 13, 2007
Errol turned blue (not sad, the color) at school Thursday, not all blue, just a little bit (mostly his face, feet and hands). His teachers are so brave. If one of my students turned blue I'd panic, and probably turn blue myself (actually, one of my students has blue hair - it's an art school - but that's a different matter). Blue babies, as these heart babies are often called turn blue when they overexert themselves: pooping, laughing, running (we’re not there yet), chopping wood. As soon as Errol turned blue his teachers watched him and the clock like hawks (they’ve been told not to panic if he is blue for just a few minutes), and then when they couldn't stand it any more, they called Cary who swooped in and took him to the amazing Dr. Hunsinger, who was as cool as a cucumber and said that Errol was just dealing with a little virus (when kids get the chills from a fever they preserve their core heat by borrowing blood from their extremities, which then turn blue with envy. Voila, Blue Baby.
So Errol's just got a little virus, and he's feeling better already, and looking a lot less blue. Errol is our little blue Zen master – sensei - and today’s lesson was how to be calm. The more time I spend with Errol, the more I learn not to worry about little things, which gives us more room to enjoy big things; like swinging. Errol was feeling so much better that we went to the park today and swung, and laughed, and swung some more, which is a really big thing.
Speaking of big things, here is the current recipe for Errol’s bottle.
4 oz water warm (easy)
2 scoops baby formula (he loves it)
1 packet of thicket (drink thickener. Less filling tastes great)
2.0 ml Axid (anti-reflux medicine)
1/2 tsp probiotics (just like grandma used to make)
1/2 tsp flax seed oil (it's not for the flavor)
1 packet fructalose (makes him poop)
1/2 St. Joseph's aspirin (for the heart)
1.0 ml children's liquid vitamins (for the ladies)
Shake well and bottoms up!
And it all tastes great to Errol, and goes down smooth.
Thursday, October 11, 2007
In college, I could never make it to class or do any work when the weather was beautiful, or when a fantastic new experience beckoned. I believed that life was short (and it had been), that today could be my last (which is true), and that I should spend it joyful (and I did). After twenty three years (give or take a few weeks) of living for the day, I kept not dying (which was a good thing). I realized that, though I could die, at any moment (which is true) probability was on the side that I would probably wake up alive the next morning (so far, so good). So I left my ephemeral days behind and set out to make something a little more permanent out of my days that just seemed to keep on coming. I began to work, adding the days up to something bigger than a day. It felt good, I had momentum. I was an architect of something important. But building has its downside too, and part of the spontaneity and joy was the marrow of my life was slipping away. The days kept adding up, but when you have more of something, each part seems smaller.
And then something remarkable happened: I had Owen (and later, Errol) and something very biological and raw overtook my mind. I felt like my building was done (my biological duty had been completed, the genes passed on) and that I could crawl off and die fulfilled. But, at the same time, because of my love for my boys, I had never felt more of a reason to live. Nature was done with me, but I was only just getting started.
Which brings us back to the start. Now that I was done building, Owen and Errol taught me, once again, how to live in the moment.
At first, a child’s mind is not equipped to think beyond the moment, the present is hard enough. And so that is precisely where they dwell, right between before and after. And how they inhabit the moment! (Which can be awful, when you are sick and exhausted and their bodies have been inhabited by demon banshees, and the moment stretches out ahead of you endlessly.) But mostly there are those glorious moments when you lose yourself in their joy, which becomes yours. You don’t live vicariously, you live. Today, Errol on the swing, laughing until his voice became hoarse. Loving this new sensation of hurtling through the air at full speed. With the wind in his hair (and this, a boy who can’t even crawl!) suddenly propelled into the air, laughing, and laughing, and laughing. It was a rare and beautiful space he pulled me into as I pushed him. And I never would have, without him, been a part of that flow. And then there is Owen who I tickle until he can not stand it, and then I tickle him some more, just to the point of ecstasy. His laughter melds with my own as we howl and roll on the bed outside of the trap of time. These boys bring me the greatest, simplest joy. The most joy of my life since I too was a boy. I am so grateful to them for what they give me. And Errol, dear Errol, as much as he is growing up and getting better, I think (and hope) that he will always live a great deal of his life in the moment. And Owen, sweet Owen, is lucky, like us, to have, beautiful Errol who will help lead us back to that happy moment on the swing, again, and again.
Monday, October 08, 2007
As you probably know*, my son Errol was born with pulmonary atresia, a severe heart defect. It was only through the compassion, brilliance, and heroic work of his doctors, nurses, and therapists that he is alive. The life saving work of Errol's medical allies is made possible by the generosity of the American Heart Foundation.
Everyone knows someone affected by heart disease or stroke. For those I love, I will be walking in this year’s Heart Walk. I have set a personal goal to raise funds for the American Heart Association and need your help to reach my donation goal. We are raising critical dollars for heart disease and stroke research and education.
You can help me reach my goal by making a donation online. Click on the link below and you will be taken to my personal donation page where you can make a secure online credit card donation. The American Heart Association's online fundraising website has a minimum donation amount of $25.00. If you prefer to donate less, you can do so by sending a check directly to me.
Your donation will help fight our nation’s No. 1 and No. 3 killers—heart disease and stroke. You are making a difference. Thank you for your support.
Login to visit my personal web page and help me in my efforts to support American Heart Association - Winston-Salem, NC
Some email systems do not support the use of links and therefore this link may not appear to work. If so, copy and paste the following into your browser:
*Some of you have already gotten this message and made generous donations. Sorry for the repeat.
Here's the good news. Part of the reason that Errol’s geneticist, Dr. Saschi, undiagnosed (yes, I made that word up) Errol with RTS is that he has exceeded many of the RTS benchmarks. For example, Errol is way beyond the RTS parameters on the height and weight growth charts: he's now 50% height and 25% weight (with a few more trips to Bojangles I'm sure we can get him over 50%). There were also a couple of physical characteristics for kids with RTS, which he has now grown away from (wide toes, wide thumbs, etc). I want to be clear, Errol is not typical, he has a profound syndrome (we just don't know what it is) and I'm not naive/in denial enough to think he will suddenly become developmentally typical. But we feel thrilled that Errol keeps making progress and exceeding expectations. And, above all, beyond al his physical and developmental progress, his greatest gift: his happiness, is still in abundance, ABUNDANCE. Just spend an hour with Errol and you'll see.
Sunday, October 07, 2007
Errol is undiagnosed. He is no longer our son with Rubinstein-Taybi Syndrome (our apologies to those of you who were so lovely and generous to learn all about the syndrome we thought he had), now he is just Errol. His undiagnosis has erased a year of what we thought we knew about him. For four days now, we’ve been drifting away from knowing Errol through his ex- syndrome towards knowing Errol as he truly is. From prescription to description. All expectations are up in the air, and surprisingly (perhaps naively) we feel good about his RTS ceiling being lifted (although you never know what it will be replaced with). But who ever knows about anything, really?
This is one of my favorite A.R. Ammons poems
flies hard to
stand in the
lets us loose
into ease and slow grace
You might think our direction is gone now that we don't know Errol's diagnosis, but instead we has been given direction as we dissolve into the grace of knowing Errol as he is now.
Thursday, October 04, 2007
Cary just had lunch with a friend whose child at the Children’s Center has an undiagnosed syndrome. As we talked about their lunch, Cary and I agreed about how difficult it would be to have a child who was undiagnosed, and tha we felt very lucky to know (more of less) what we were dealing with.
The next day, Errol went to visit our wonderful geneticist who originally diagnosed him with Rubinstein Taybi Syndrome. After the examination and tests, the doctor told Cary that she has revised her diagnosis and that she believes that Errol does not have Rubinstein-Taybi Syndrome (and I just learned how to spell it).
Our first reaction was disbelief, distress, and disappointment. To me, the only thing worse than a bad diagnosis (most of the time), is no diagnosis, which is what Errol has. Errol’s identity, our expectations (albeit diminished) vanished. We suddenly felt adrift and discombobulated. I felt like I had been punched in the chest.
That was the first ten minutes. Later, my mood lightened. After all, Errol is not an abstract diagnosis, he is a sweet boy with a serious heart defect, wacky kidney troubles, and a whole host of cognitive and physical developmental disabilities. Nothing about Errol, and how we treat him, has changed.
That’s not to say that we feel happy. The few expectations, the parameters of his life, we clutched at are gone. We knew the percentage of RTS kids who talk, walk, the stories of what they are able to do as adults. We had met RTS kids. All this research does little to inform us of Errol’s possibilities.
But we do know this: Errol has an unnamed genetic syndrome, that is chromosomal, and structural (in other words, the architecture of his brain is formed and can not be “fixed”). And the really good news is that his syndrome is not degenerative, in other words, he is going to grow and get better. To put a really good gloss on it, there are now no limits (good or bad) on what Errol may become (the bar could raise, or it could lower). Which is all the more reason to focus on him, on the moment, and forget the future (easier said than done). We can use therapy to maximize his potential, we just won’t know how far it can take him (but who does).
The bottom line is this; we still have the same son who we love so very, very much (and more each day). His doctors have always treated his symptoms not his syndrome, and we have always loved him, not his identity. We will treat him no differently; emotionally, physically, cognitively, it’s just that we have lost our footing for now. Maybe we will get a diagnosis one day, maybe we will live enough in the moment that we won’t care. Right now, my head is full of possibilities (not all good) and all I can do is hope for the best.