Have you given thought to the change in how the people see ability? When I was growing up, people who had differences, physical and developmental were kept away. They went through school in different classes. They weren’t playing sports at the same venues or in the same dance classes I took. Every one who was with me was like me, and everyone who was not like me was somewhere else. This magnified the all the ways we were different.
When I learned about Obi’s condition and every day since I’ve fretted about all the ways she’ll be different. From her peers. From her brother. From us. All they ways we won’t really be able to understand what she’s going though. All the ways other people will see how she is not the same.
This week I had an epiphany. It was Facebook’s doing. You know how everyone is sharing those Facebook Anniversary movies. Well, watching mine I had the first real moment of realizing how much Obi looks like her brother. Not just in features, but expressions as well.
I’ve spent months and months noting how much she looks like a ‘Williams’ kid. I was so blinded by this ‘difference’ caused by the deletion of 28 genes on chromosome 7, that I was completely blinded by what was happening on the other 22 chromosomes.
Despite the people at genetics telling me over and over that she is more than the diagnosis, despite loving her absolutely in spite of her diagnosis, I have been completely and utterly guilty of allowing it to overshadow other parts of her.
As soon as the light bulb went off, I was reminded of the time after my dad died.
I had this long stretch in which I could only remember him in that moment. My whole experience of him was whittled down to that brief fleck of time that was his death. At some point, (quite some time later), the shadow that had fallen over the rest of my memories of the time we had spent together lifted, and I was able to see that instant as such a small part him and me. Just a blink. Although his death was so present, so looming, I realized I needed to remember all the days he lived to put the one day he died into perspective. After I did that, joy started to seep back into my life.
Once again, I can now clearly see the magnitude of the shadow that has fallen. It’s been a f$#%ing hard year.
Those differences – they take up a lot of time. Appointments, therapies, exercises, explaining her delays, little pity parties – all about the different.
But sweet Obi looks a lot like her brother. She lights up when she sees him the same way he lights up when he sees me. She likes to ‘dance’ with this crazy wiggle then stop and wait for you to do the same. She has my hands. She has so much in common with her dad, her brother and me. We’re more alike than we are different.
I’m gonna make an effort to me more present for those – the alikes. I need to. And more importantly, I think she needs me to.
…that you maybe haven’t given much thought about. This past week we had the 1 year anniversary of Obi’s homecoming after 25 days in the NICU.
We had no idea the journey that lay ahead. Realizing that Obi was not coming along like a typical baby, identifying possible causes and bringing them to her doc’s attention, wading through genetic testing, learning her diagnosis and diving into the steep learning that comes with a complex syndrome like Williams – what a year! I was inspired by this post today on Cheering on Charlie to share some of the thoughts and experiences that have stood out for me so far.
1. It is unbelievably isolating. Charlie’s mom mentioned the same about her micro-preemie experience. In my case, not only are the other cases few and far between, but because it’s a spectrum syndrome, no two cases manifest in exactly the same way. While there are many people who want to help and want to listen, at the end of the day, it’s a journey one undertakes alone. No one else can really know what it’s like. Even my DH and I are experiencing it differently.
2. There is a vague understanding about what her life will be like, but there is no one road map that you can look at and say, I understand how this will go. While this is true for all kids, there is a widely accepted norm for typical kids that is simply absent. Of course no one knows what the future will bring, but I really, really don’t know. It makes living in the moment incredibly important and horribly difficult.
3. There is worry and fear unlike anything I experienced with my typical baby. There is worry about every meal, every sound, every movement. As each and every baby we know flies past her in development, those that are the same age, those that are 6 months younger, the impact of her condition becomes more tangible. What will this mean as the months turn into years? There is fear of tomorrow, next week, the week after that and every week from today until the end of my time, and then there’s the worry for the time after that. It is ever present and unrelenting.
4. Knowing she will always be ‘different’ is a hard pill to swallow. As someone who has always been a little odd, one would think I would have an easier time embracing this. And yes, I have hoped for my kids to be the ones who march to the beat of their own drums. But knowing she will have no choice in the matter, that children may point, that adults may stare or worse, that people will avert their eyes and look past her, and that she will have no ability to fade into the masses if that is her only wish, makes me sad. I have read that lots of individuals with Williams Syndrome are wonderful, bright and loving and people are drawn to them but not being able to picture just what her version of Williams Syndrome will be at 8 and 16 and 23 and 40 – I fear that she will feel her difference and experience isolation and loneliness because of it. I hope I am so very wrong about that.
5. There are moments of mind blowing clarity when I look at my little critter who seemed to defy the odds at every turn. She fought her way into existence. and continues to fight to conquer even the tiniest milestones, ones so small you don’t even notice when a typical baby just sails though them. She proves every day that while, she may be a mystery, she is no mistake. She, just in being, makes me want to be better. If I could have half the fight and determination she’s already shown? Well, I should be so lucky.
Last we I mentioned briefly that I have some thoughts on “Welcome to Holland“. Dana Nieder (email@example.com), over at Uncommon Sense talks about it too, in her post Amsterdam International.
Well that’s all well and good, but from someone who is still at the airport, here are my 10 thoughts. I reserve the right to feel differently about this as time passes.
1. I have been to Amsterdam International. As a hub, people leave there all the time to head to other places. It’s a kick ass airport. Schiphol. I won some money in the casino there. I have fond memories. The experience of learning my child has a lifelong syndrome is nothing like the experience of skipping my boozy self through Amsterdam International.
2. I’m pretty easy going. If I was planning a trip and ended up somewhere else, I’d be a little put out but I’d go along with it. I’m all for ‘off the beaten path’. At this time, I feel much more like I was supposed to go on a a fabulous journey (one filled with hard work, granted…a volunteer-cation perhaps?) and instead I just had to stay at work. There are rewarding things about work – I know that – a job can be very fulfilling. But right now, instead of big bowls of pasta (in the Italy example) or Windmills (in the detour to Holland) all I see is my suitcase on the bed, piled high with research and forms and contacts and what have you. It’s not like being stuck at an airport, it’s like being stuck at customs.
3. There is a lot of waiting. It’s not like your flight has been redirected and you skip off the plane somewhere else, are warmly greeted and you’re free to make your way out of the airport. I feel like they said you’re going to Holland but the airspace is closed so we’re going to land in Italy, put you on a bus and a train and a donkey and eventually, (no idea when, you’ll just have to wait and see, time will tell, be patient) you’ll see some windmills and you’ll know you’ve arrived. The diagnosis is the only definitive answer you get (if you get a diagnosis at all).
4. You have a lot of places to be. In ‘Holland’ there is a ton of bureaucracy. And there is no one to translate it. And you’re on your own. It’s even like the airport has no one working in it.
5. Both these essays leave out second time travelers entirely. If you’ve already been to Italy, and now you’re suddenly in Holland, you can’t help but compare the 2 trips. And let’s face it, Italy is a better trip. Not to say there won’t be ‘great moments’ in Holland, but it’s not gonna be the same. That being said, there’s no guarantee that 2 trips to Italy would be equally awesome.
6. I’m guessing some people never get over it. I don’t think it’s any way to live. I don’t think anyone should dwell on it. But I suspect some people don’t come to appreciate the tulips. I know that’s not me and yet I worry that it is. I worry about a lot of things. The fact that I can’t speak dutch is so minor it’s almost inconsequential.
7. I seem to be the only one who got off the plane. Where are all the other tourists heading to Holland? It sure is startling to find that no one else is walking down the skywalk and your luggage is the only case on the conveyer. It’s very lonely in Holland. Wish you were here.
8. Everyone’s experience of Holland is different. This adds to the feeling of isolation.
9. Did I mention the waiting?
10. Sometimes you need to seek out the people you trust enough to share that your trip, the one that you were so excited about, that you’ve dreamed about…that you’ve pursued tirelessly, is crappy. Because it is crappy some days. It ain’t all windmills and tulips. Most feel the need to be really chipper about the news that you are not where you’re meant to be. They don’t want to be sad. They don’t want you to be sad. If they act happy, then everything will turn out great. Heck, they say, “I’m sure you’ll find yourself in Italy in no time”. But guess what? Chances are when you are first sharing the news, they are sad. You are sad. Everything will turn out some way or another. It’s ok to say “Right now, this change in plans, this flight redirect? It’s craptastic. And I have no idea what I’m going to do about it. So I’m gonna sit here on this plane and figure out how to make the very best out of flippin’ tulips and windmills.”
hmmm, upon re-reading this…I should just stay on the plane a while longer.
Obi is not sleeping well. At least not at night. seems to be related to digestion…or maybe teeth. If it is digestion, I’ve read some WS kids have worsening digestive symptoms at 6 months, so could be WS related. Or, could be typical baby stuff.
Who knows? I do know I look at every little thing and wonder if it part of the WS or part of life. EVERY little thing. I’m exhausted already. I hope this part gets easier.
As in, we’re hanging in there. Because really, what else can you say?
When you’ve just received news that your perfect little princess is, in fact, not perfect after all, that she’s got a genetic anomaly that affects a whole slew of major systems in the body, that the future you’ve imagined is not to be, that it brings real honest-to-goodness health concerns, social stigma, endless appointments and a healthy dose of uncertainty about the future, what the F else are you supposed to say? That you sit in your parked car and weep? That you wake up in the morning and just for a minute before you really come to you forget and then you remember and your heart breaks for her and for you all over again? That you have no f-ing idea if you can handle it?
You can’t say that. It means you have doubts about your ability to parent. It means you admit to others that you’re not certain everything will be ok. It means that you put the diagnosis before your still-perfect-to-you-daughter, It means you’re weak. And you can’t be weak. You need to be strong and then stronger still – for your baby girl and your family and your husband and even more strong for your self.
If you’re not strong you might find the diagnosis takes over. And you can’t let that happen. Because you know if it does you’ll lose your little girl to labels, you’ll lose your marriage to uncertainty and you’ll lose yourself to your new advocate role.
So you need to hang in there. I’m hanging in there. What choice do I have?
Sometimes you just need to let your heart be broken for a bit, before you can starting putting it back together again.
We’ve heard from genetics as I mentioned in my last post.
My sweet, perfect tiny baby girl was just that. And when I was talking to the doc, just before he gave me the news, I looked over at her and thought, I need to remember this moment, because right now, you’re not a patient or a diagnosis. You don’t have a label. You’re just my perfect little baby. You have challenges and good days and bad days but that’s all they are. I need to remember this because there will be times when all I see is what they tell me you are and I’ll need to remember this sweet little critter, my Obi, my little peachie pie. Little chicken. Little Miss. Missie Miss.
I knew while I was still carrying you that you weren’t typical. I knew when I first saw you there was something different about you. I mentioned it time and again to nurses and doctors. To your dad, friends, family. I did my research. I read and dug. I came up with a theory. And I was poo-poo’d. I was told I was crazy, looking for problems that weren’t there, I needed to give you time, you were small, a preemie, coming around, I was told “it’s gonna feel good when you get the results and I can say I told you so”. The docs told me it didn’t fit, it was unlikely. They told me they’d test but they had other theories.
But I have know you the longest. And who knows you better than me? I wish I could tell you I was wrong Peachie Pie. Or that the thing I had identified was trivial or slight.
But it’s not, sweet love. And the challenges you’ve faced are small compared to what lies ahead.
You have Williams Syndrome.
10-20 times more rare than Down’s Syndrome, you have a complex condition caused by a deletion on chromosome 7 that commonly results in heart, kidney, thyroid and calcium issues. It means spacial difficulties, learning difficulties, an increased chance of ADHD, autism, diabetes and a low IQ. With these challenges also come strengths in verbal abilities, an outgoing, friendly disposition and a likely affinity for music. From my very preliminary understanding, it’s a complex syndrome with limited research and limited funding. It’s a very rare condition. And I’m so sorry you’ll spend your life in an uphill battle.
You’ll wage war against physical, mental and social challenges. You’ll battle perception. You’ll battle labels. You’ll find everyday tasks to be beyond your grasp. You’ll always be different but not by your own choosing.
That makes me very sad. Jaw droppingly, heart achingly, sick to my stomach sad. But know this. You won’t have to fight alone. Once this pity party ends (i just need a little time to grieve the things i had imagined for you and for us that won’t happen the way i had planned) please trust, in the very core of your being, that I will fight with you and for you, with every breath until my last.
You may be a 1 in 20,000 child, but that makes me, by default, a 1 in 20,000 mom, and together we will create the most wonderous life for you, your brother, and our whole family.
I just need a minute. A minute or two more. Just let me sit here a little longer before we start the fight. I need to catch my breath first. And I haven’t had my piece of pity party cake yet.
When you learn you’re having a baby girl, regardless of the misgiving you have about the day-to-day ups and downs in the pregnancy, your mind wanders to what the future might be like if it all works out. You get to have a baby girl, a daughter. You get to have tea parties and dance classes. You get to help pick out prom dresses and wedding dresses. You imagine grand babies. You have a dream for her, and for you and her. You have a dream for yourself as a mother and a mentor and a friend.
You have a dream your life would be so different from the one that you find yourself in when you get the call that your followup from genetics has been scheduled for months down the road and you’ll be seeing a different doctor and be followed by a different clinic.
In that life, the one you find yourself in, you freak the fuck out because followups and clinic switches must mean there are results and if there are results, then why the hell do you have to wait 2.5 months to hear them. And then you go all momma bear and ‘make some calls’ which can be loosely translated to “lose your shit” on a number of people.
At the end of these “calls” – which take place over 3 long days, you find there is suddenly an opening for Tuesday, 5 short days away, with the original doc you saw to discuss results, that are, as you suspected, in. And, after that gets arranged, you find your phone is ringing, again. This time it’s the doc himself, with apologies for the mix up and the offer to give you the results over the phone – something, he tells you, they don’t usually do – but given your level of stress over the situation, (ie – because you seem to be losing your shit), he is willing to do in this instance. Of course, you say “yes, thank you” and he asks if this is a good time and if you’re sitting down and you say “yes” and “yes” and then as he speaks, the dream you dreamed of your future, the dream of your charmed life with your charmed daughter (the dream you knew in your gut and your heart was a long shot but you chose to dream just the same) ends. It dies. And a little piece of your heart dies. And a piece of you, as a mother, dies right along with it.
Just like Fantine in Les Mis says, now life has killed the dream I dreamed.
When you set the ball in motion to look to genetics for answers, you learn the answers you seek are like finding a needle in a hay stack.
I posted about our meeting with genetics here.
We knew they had suspicions as I mentioned in the post I linked to, and I started to live as though their suspicions were true.
Still I waited for the follow up with bated breath. I am one of those people who needs to know once and for all.