I have been meaning to write a post about steps to take when you first learn about a new diagnosis. I’ve been wading through these deep waters and feel rather hung-out-to-dry when it comes to finding the info you need start helping your little person access the services they need. That’s a long sentence, but not nearly as long as the roundabout route one seems to take when trying to find info about these things.
Today for example, I got a call from one place that offers a certain program telling me that going to a paid program at their center is considered a duplication of service if I’m also receiving home visits from another center (unpaid) and I need to choose which one I want to continue. This after both centers recommended I get on the list for the other program to increase her access to intervention.
Trying to sort all out all the appointments, interventions, programs, services, and therapists is a full time job.
I will be keeping track of everything I learn and will devote a post to my experience. Still, with every province in Canada offering different services, every city having different agencies and who knows what happening in the US, not sure it will be super useful for everyone else.
I think I’m going to pick the Baby Program at the center over the home visits, just to get me out of the house. Fingers crossed it’s the right decision.
Sometimes, when I get asked too many questions or read too many Williams Syndrome sites online, I start feeling overwhelmed by all the ‘what if’s’ and ‘could have’s’ and the unknown. What lies ahead feels like ‘too much’ when confronted with all the possible things that could be an issue as time passes.
I find, at these times, I cope by trying to focus on one little baby thing that Obi is doing that seems like a regular baby thing. I listen to a gurgle. I coax a smile. I watch her pass a toy. I try to forget how late these small moments are compared to typical babies, how few gurgles and smiles I get, how slowly the toy moves. I remove expectations from the equation.
I make myself let it all go and I really really do enjoy the moment.
I’m so grateful for these little flashes. They are so precious to me, more than they were with the boy. With him, I remember the milestones. Smiles, rolling, teeth, sitting, pulling up etc. Each of these ushered in a new phase for him, and for me – new toys, new games, new challenges. New triumphs.
No, for her it’s the quiet ‘nothing’ moments I love. They are boring. Everyday. Typical. They run between the raindrops of her WS. Almost like a barely visible thread that knits all the parts of her that aren’t her diagnosis into a beautiful reminder that she is so much more. And that I, as a parent need to be more than a ‘special needs parent’ and that the world needs to know her as more than a WS child.
Right now, it’s easy. But I’m beginning to understand it will be my job, no matter how the syndrome manifests, to make sure the world continues to see her that way.
Missing milestones is a messy business. Obi is behind. This certainly comes as no surprise. She’s a preemie. She has Williams Syndrome. She’s been doing it from the start. Or not doing it, I suppose – whatever ‘it’ is on any given day.
But each new milestone not met is another little stab to the heart. I have a few different groups of Mom’s that are part of my regular social circle. Most of their babies were born in and around the same time as mine – or around when she was due, anyway. Some have newer babies. And one by one these babies move through each of the stages. Check, check, check. And then I find a new baby to look to as being Obi’s “age” (now these babies are about 12 weeks) although they are, at that age, already bigger than she is.
I can’t help but compare – it’s in my nature. And I’m missing the feeling of ‘I totally get where you’re coming from’. And, if I’m being honest, I miss being the first one to check a box (Bubble was quick to meet all his early milestones – check, check, check).
Obi’s OT was here last week and assessed her at meeting half of her 4 month milestones. All her little friends have long passed her by. Some are crawling. Some are rolling with intent. All are laughing and grabbing and babbling and, and, and. And we’re going to a hearing test, having OT come to the house, looking for other interventions. We’re missing the summer days under trees at the park, missing play dates and coffee dates. We’re missing typical and normal and expected.
I’m missing the feeling that everything is going to be ok because things are going as they should.
I’m feeling uncertain, facing the unknown and fearing all sorts of things that may or may not come to pass.
I’m missing the days before we ‘knew’ it was Williams Syndrome, even if I ‘knew’ it was something.
I’ve read a lot about the joy and love and happiness that WS kids bring to the world and I’m not yet sure when that part starts.
Right now, aside from my beautiful little peachy pie, all I can see is what we’re missing.
Last we I mentioned briefly that I have some thoughts on “Welcome to Holland“. Dana Nieder (firstname.lastname@example.org), 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.
A little update on the little miss. Obi met with cardiology today and she doesn’t have any of the heart trouble often associated with Williams Syndrome. This is outstanding, especially when you consider that heart issues are generally a defining factor in the disorder. I, of course, hope that the lack of cardio involvement will translate to a less severe manifestation of the syndrome but I know the two are not related. Still, a little sunny news goes a long way these days.
It’s amazing. When you suddenly find yourself in uncharted territory, the way you see and process the information coming at you completely new too. For instance, if you’d told me when I was still carrying Obi, that I would go to see a cardiologist, one of a whole slew of specialists tracking my soon to be born baby, and I’d been pleased to be there and delighted that she could be followed at our local hospital I would have looked at you like you had two heads. Which part of ‘seeing cardiologist’ is good news I would have wondered. Isn’t the fact that you’re there at all bad news.
Everything has changed.
I met with a dear friend today, one who is also a parent to a child (2 in fact) with special needs. She asked me if I’d read “Welcome to Holland”. In fact she said “Has anyone tried to jam that Welcome to Holland shit down your throat yet?” The fact that she asked me, and more importantly that I knew what she was talking about and was able to ask if she’s read some of the responses made me acutely aware of how the old days are gone forever, replaced by a brave new world. One where news that used to sound bad is far better than real, REALLY bad news. None of which I received today. I’m grateful for that.
I’ll leave you with a photo, because if you got here by googling Williams Syndrome and just want to know what the baby looks like so you can see if she looks like your baby, you’re gonna need to have a look at the cuteness.
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?
Having your life turned upside down by a life-altering diagnosis makes you tired. It’s exhausting. For one, your brain doesn’t turn off so like a car left with the motor running, your gas tank gets to empty pretty quick.
Second, you feel like to need to be doing SOMETHING, so you flit around tidying a little here, doing a little laundry over there, reading a little more on one site, posting a little on another. Then there are all the things you were doing before you were doing this… planning, pushing, advocating. I don’t know how people do it.
And I am now ‘people’. Sigh. I have to believe it gets easier.
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.