So a week ago today I posted here about a Random Act Of Kindness. I urged readers here and on Facebook to join me in voting for a photo in the Virginia State Parks First Hikes contest so the family could win a 1-week stay in the park of their choice.
I found a blog post on the Love that Max Link-UP from the blog Cheering On Charlie about the photo contest she’d entered. When I read this “At first, I wasn’t sure I wanted to enter the contest. Quite honestly, I have become afraid to hope for things.” I thought, I know exactly what she means.
There were also a whole bunch of nice words in the post about all the people she knew that had come out of the woodwork to vote – most of whom she hadn’t spoken to in ages… again – know how that feels.
She was really excited about all the votes she’d already received and was very much hoping that she could win first place. In that one post, I felt like I’d found a ‘kindred spirit’. I jumped around her blog and read more about her daughter, a micropreemie who has overcome some great obstacles to grow and thrive. I read about her challenges with being a special needs parents and I read about her hopes for Charlie. And then I decided that I could help her and her family win that prize. And, if I shared her story, you guys would help too.
Well, talk about a landslide of kindness. The photo, “Woodland Creature”, racked up vote after vote.
With my post here and the posts of others, Charlie’s mom caught on to our helping the cause and wrote about it here… which caused even more people to jump in to help.
Still, the nearest competitor was really on the ball. WC would go up, the other guy would go up. WC would get 10, 20, 100 votes and the competition would do the same. It was seriously stressing me out!
Then suddenly, I got a message from a friend who was helping me rally the troops that mentioned this blog post comment:
“Hi “Woodland Creature’s” mom. My name is Sarah, and I am the other high voting opponent in the VA State Parks first day hike contest (“Best friends that hike together…”). My husband (in the photo) and I decided to lay off the voting spree and concede before this contest has ended. It should all be in good fun anyway, and we had a lot of fun rallying our FB friends and co-workers to vote for us. You were such a tough opponent, matching us vote for vote or out voting us, that I had to do some Googling to see what who I was up against! After reading your blog about Charlie, my husband and I have decided that your family deserves a cabin stay more than we do. Parenting in so hard, and you’ve had a bit more on your plate than your average parent has. You were such a touch opponent, and Charlie deserves the win! I am a new mother myself, and I just couldn’t continue on for the win after reading your blog. Warm hugs to you and Charlie from Elsa (my daughter) and I. If you ever want to say hello, you can reach us over at oakwoodhouse.wordpress.com. Have a great cabin stay!”
This came from Sarah who conceded the contest so that Charlie and her family could take the prize!
I wrote to Virginia State Parks to let them know how classy the 2nd place finishers were and after reading the final results post, it seems I wasn’t the only one.
They were awarded a special 2nd place prize of a 3 night stay.
I want to thank you very much for taking the time to vote for this family and I hope you had the same case of the feel-goods that I had during the voting process. Charlie’s mom is thrilled that they’ll be enjoying a getaway this year and is oh-so-very-grateful for the role we all played in their journey to the top.
My biggest take away is that I will always be able to find a way to shake the blues by reaching out and doing something kind for others – even if I don’t really know who they are. Even if they live 1000 miles away.
We did good.
Something nice happened when I learned I had a child with Williams Syndrome.
I became a nicer person. I became a person who couldn’t afford to be completely self centered (though I am ashamed to say, I found those 40 self-centered years to be pretty fun. And I never really gave any thought to why there was a problem with that). Overnight I came to understand that I would not make it through this process alone – that none of us makes it through this alone. Oh, and that there were people I should have tried harder to be there for that I never even thought to reach out to. (That part still makes be feel bad.)
I also realized that the past is the past but there are things, big and small, that need doing now. And if not me, then who?
In order for my child to grow up to be loved and accepted in society, I believe folks need to have some awareness about her syndrome. Someone should really work to raise awareness on her behalf, and on behalf of all individuals with Williams Syndrome.
And if not me, then who?
There are therapies and specialists – so many it makes your head spin, and someone needs to understand how they all work together. And needs to be able to share this info with the next parent who feels lost and alone.
And if not me, then who?
Someone really should make people understand it’s not ok to say ‘retard’, ‘retarded’ or any other derivative of the word.
And if not me, then who?
Someone needs to let other parents of kids special needs know they are not alone.
And if not me, then who?
That’s the reason I took it upon myself to Cheer on Charlie in the Virginia Parks Photo Contest (in which they netted the most votes, by the way). Because they were a nice family who needed a break. Because their story touched my heart. Because someone really needed to drum up some votes so the little family with the cute little girl who goes though a number of the same therapy sessions as Obi is now who really wanted (needed) to get away had a fighting chance to do a ‘normal’ thing.
If not me, then who?
Well, in this case, it turned out to be me, and a whole bunch of you. Which is also nice.
Remember that feeling of being a nice when I come calling for my first Williams Syndrome Awareness Event. Know that we may have the only WS kid there…I don’t know any others in Toronto yet. Given the probability of having a WS child – between 1-7500 to 1-20,000 – statistically only 19-50 will be born in Canada this year.
According to those stats, there are only 2000 or fewer individuals with WS under the age of 20 in the entire country. That makes it rare. Like, really really rare.
But Williams Syndrome being rare doesn’t make it any less of my reality or her reality. It doesn’t mean that people shouldn’t learn more or accept more.
It doesn’t mean she should have to live less of a life because she’s only one of a few that has these 28 less genes than you or me.
She, and all the other little peeps with Williams Syndrome and a host of other little peeps with countless other conditions and syndromes need all of us to make sure that everyone gets to live their lives to their fullest potential.
If not us, then who?
I wrote an entirely different post. But when I read it, it was well… sad. You see, it was this time last year that things started to go south fast in my pregnancy. Warning signs lead to tests lead to hospital bed rest lead to more failed tests lead to worry about baby’s safety lead to emergency c-section lead to Christmas, New Year’s, my birthday in the NICU lead to home on RSV season house arrest lead to a laser focus on Obi’s delays lead to tests lead to diagnosis lead to more tests, therapies, adjusting to the new normal.
It’s been a year filled with the unknown, worry, disappointment, grief and challenges. It’s been a very, very long year. And when you stop there, it sounds like that’s all it’s been.
Which is far from the reality. As with any new baby, there have been all these tough times, but there has also been unimaginable joy. I suppose this is also the real lesson I’ve learned as a parent of a special needs child. It is true that the lows are lower. The hard times are harder than with a typical child, there’s no question. But these don’t take away from the splendour or the majesty or the joy. I think they probably make it all a little bit sweeter.
The calendar is triggering all these memories of how things went from what I expected when I was expecting to this giant uncharted sea that is Williams Syndrome. But the calendar is also signalling my most favourite time of the year. It’s easy to stay at the pity party and wallow in the woe-is-me’s, but that’s not gonna help anything AND it’s going to mean next year I’m looking back at this year as another one that fell flat.
So to try and move past what happened last year and embrace THIS season, I’ve decided to stuff my advent calendar with little reminders of all the magic that happened this year. To actually count my blessings – 25 of them – and take 25 days to reflect on what a wonderful year it’s been. Really, learning my child has Williams Syndrome is just ONE thing that happened. This also happened:
1. Our infertility journey came to an end when we welcomed the sweet baby girl that completes our family.
2. We were fortunate to spend our NICU time in an incredible environment and never worried for one minute about the love and care Obi received.
3. Although Obi ultimately didn’t become a ‘nursing’ baby, the time we spent trying was filled with sweet bonding moments.
4. My eternal newborn still has that sweet baby smell, at almost 1 year old.
5. The boy has blossomed as a loving and nurturing sibling.
6. Obi’s first smile very nearly melted me into a puddle of goo and every one since has been glorious.
7. I have learned are really good people in the world whose sole purpose is to ensure children shine.
8. I got to experience the feeling of holding a new (day-old) baby again when there had been many days I thought I never would.
9. People have been gentle with me when times have been rough.
10. My business is fine despite taking a backseat.
11. I realized how grateful I am that we live near Sick Kids.
12. Obi saw many specialists but so far has no concerning health issues.
13. Obi laughed and it was magical.
14. I learned that small babies stay ‘babies’ longer – and I love babies.
15. I took a stand against something and found others stood with me.
16. Through Mommydo, I came to feel I am not alone.
17. I got to take long walks with a sleeping baby in a stroller.
18. I got to watch a lot of great TV while a baby did not sleep at night.
19. I made new friends that I would never have met if things had been different.
20. Obi sat for the first time and I thought my heart would burst with pride.
21. I made nice with my bre.ast pump and have met the goal of 1 year of bre.ast milk for my little miss – a huge accomplishment.
22. I brought a tiny human into the world and she has changed me and all those around her for the better.
23. I learned what unconditional really means.
24. We gained a whole new ‘family’ in the Williams Syndrome community.
25. With Obi’s arrival I experienced sorrow, but not as deeply as I experienced JOY.
So there’s this problem we’re having. It’s kind of like when a baby isn’t sleeping through the night… except that by ‘not sleeping through the night’ I mean “baby won’t close her eyes for any reason, like not even to blink between 11pm and 2,3,4,5 am”. The time on the clock is variable but the effect is the same. We live in a zombie like state. We’re 4 weeks from one year of not getting any freakin’ sleep.
We have devised a system whereby one parent stays on the main floor with baby and weathers the sleepless storm of tears, kicking, fussing and blood curdling screams and the other sleeps upstairs in the bed…the sweet, sweet bed.
There are many things wrong with this system, I know. But we were barely surviving and this was the best we could come up with.
The question is whether the sleeplessness comes from her WS or from a series of bad sleep habits that she’s picked up along the way. And I suppose, in addition to that…does it matter?
I know a lot of kids with WS have sleep issue, but then, many kids without do to.
I spoke to my Doc and she suggested abolishing the bad sleep habits first, then see where we’re at.
Huh. Never thought of that. (of course I felt kind of dumb on the phone…)
I fear I’ll spend a great deal of my parenting career with her trying determine where something is the syndrome or just a typical kid thing. It’s hard not to blame WS for everything. I’m still a little mad at it.
So I’m gonna make a conscious effort to see Obi first and the syndrome second. To embrace the ‘just because’ before the genetics. Sure, for true medical issues I will remain super vigilant. But for the rest, for the quirks and questions, I want to parent ‘who my child is’, not ‘what she has’.
I suspect there will be many times when the line is a little fuzzy but really, after not sleeping for a year, everything is fuzzy.
The boy isn’t a big party guy, despite my pulling out all the stops this past weekend. Like, spent the whole party saying “I want to go home!”
I’m working on a post about the party, my new lens and other goodness, but in the meantime, that there is the grumpy guest of honour. I got this superfab idea and template for the sign here at 733blog.com.
I’m tired of reading things like “God only gives special children to special parents” and “she couldn’t have come to better parents” or best “special needs parents are the bravest/strongest/whateverest”. Pffht. My child is special. ALL children are special, but one of mine needs a little more than most. This has very little to do with the kind of person I am or am not.
That being said, I am the kind of person who needs to know things. I’m a why? what next? and when? person. So it comes as no surprise that I struggle a little with the “Why? Because.” aspect of having a child with Williams Syndrome. I have read that WS children are born to parents of all ages, all races, with all types of conception stories. It’s a rare syndrome, but not one that discriminates. It picks the not-so-special parents too.
So in attempt to answer the Why’s I’ve enrolled in an online course called Useful Genetics. In doing so I have learned a few things about myself:
1. I am willing to do just about anything for my little girl.
2.: There are reasons that they tell you to take biology in high school and this is one of them.
3: We are complex beings.
4. Genetics makes my brain hurt.
I wish finding answers to complex questions was easier than Useful Genetics. I wish I was one of the ones who could accept the “special people = special kids” theory, feel all puffed up about myself and move on. And, I still kind of wish I was one of the ones who never has to think about this stuff at all. Or transcription, translation, codons… you probably took biology and already know what those are. Sigh.
I’m not sure I’ll ever know why our perfect Obi came to be the way she is. But I do look forward to closing the book on feeling like why matters.
Oh yeah, I’m only in the first week.
Trying to decide what to dress the kids in for our Christmas cards photoshoot this week with the lovely and talented crew at barebonephoto. I’m super excited but I’m not sure I have the right outfits. There are still a few days to think about it. Do you do photo cards? Whole family or just kids or pets?
It’s amazing how everything can be going along tickety-boo, just racing along – then wham, you hit something and everything seems to grind to a halt.
I’ve taken to calling these moments speed bumps. The term makes me feel like whatever is tripping me or Obi or life up is just a temporary thing.
Right now with Obi, it’s feeding. Purées don’t really go down unless she’s sucking them off her soother. Munchies like toast sticks and mum mums are heartily stuffed into the mouth, but any attempt at actually swallowing the thoroughly mushed bits that break off a toast stick she’s gumming results in a gag fest and the bits being spit back out.
Sensory? Something physiological? Who knows?
Obi’s been referred for a feeding study to see if they can find an issue or rule anything out. In the meantime, we’re continuing to try and interest her in food and coax some down her throat.
Her other skills have improved rapidly. She’s met all her 8 month milestones but one – both in gross and fine motor skills. With the help of her fab OT she sailed through. But feeding puts us back to the slow crawl of early days.
They were dark days filled with knowing something was up but not knowing what. And a lot of fearing the worst.
My first instinct hasn’t changed much. Now when I think of all the if/then’s I still start to feel a little panicky. If she doesn’t start eating solids soon, then we’ll need to/she’ll need to…If she has a major sensory issue then…if she has something major like some kind of stenosis that interferes with eating then…
…except I don’t know what any of the ‘then’s’ actually are. Which makes me even more scared.
I had a little moment in the car on Monday, a ‘how are we going to get through this’ tear up moment in which I envisioned all the worst case scenarios when it came to food and eating which made me think of all the appointments which made me think of all work I wasn’t doing as I was rushing off t meet her OT after handing in a permission slip with “unable to volunteer’ checked off for my son’s field trip, which made me think of how I wasn’t able to get groceries as I was late to meet OT, which made me think about her bad eating all over again.
And then I had to pull myself together and think: This is not a crash. Just a speed bump.
If one hits a speed bump then you just work through it and keep moving forward. It’s not a stop sign or even a yield sign. It slows you down then you get going again until the next one.
How many will there be? I have no idea (which also makes me a bit panicky). But I do know, the only thing you can do is tackle them one at time.
At least that’s what I keep telling myself. Just get over one speed bump at a time.
Today is Pregnancy and Infant Loss and Remembrance Day. And, I know, nobody talks about miscarriage and babyloss. But today, I can’t help myself.
If nobody talks about how a miscarriage threw their life for a loop how would anyone else know it’s ok to feel the same.
If nobody talks about miscarriage, how do you know some people just keep keeping on, and that’s ok too.
If nobody talks about miscarriage, how do you learn that it happens to lots and lots of women and you’re not alone. YOU’RE NOT ALONE.
My first miscarriage in a word? Sad.
Chest-achingly, life-alteringly sad. I don’t even know if those are words but you get the picture.
It was one of those ultrasound moments like you see in the movies when you think everything’s going along tickity-boo and then it just isn’t.
We walked in laughing and joking about Baby Olive and walked out as shadows.
For the way I go on and on about it, you’d think I lost a fully cooked actual take-home baby. Or was 24 weeks along and could almost taste the final trimester. But I wasn’t.
It was just shy of 10 weeks. Still, it felt like the world caved in. I think the long IVF cycle that preceded the pregnancy didn’t help matters. 75 days of down-regulation before the big drugs started meant I had been working on this pregnancy for 3 months before the actual fertilization took place.
My heart was 100% in. I had created a whole life for us as a family of 4 in my head and then, POOF it was gone.
I did not bounce back. I didn’t ‘get over it’. I had no desire too. And too be honest, I still don’t. That’s not to say that I didn’t heal, didn’t move on. I have done both. But I still mourn the loss of the pregnancy and today, that’s ok. I remember that I had hopes and dreams tied to that pregnancy and when it ended, I lost those too. It still makes me sad.
Now that there’s some time between that moment and the present I can see there were some things gained. I gained perspective. I gained empathy. I gained the courage to push a little harder to find a new path to where the hopes and dreams waited for me.
We tried again. We lost again – very early on. We were ready to stop. Too much. It was all too much.
And then, it wasn’t. We decided to try one last time. Just to know for sure. Just because I needed to know we were really done.
We weren’t. We welcomed Obi.
At the time, I thought I would never make sense of what happened. This is what I think now.
If Olive had come to be, there would never have been an Obi. Olive had to be lost so Obi could be found. Obi needs us. And we need Obi. This was Olive’s gift to me.
I wish I had known Sweet Olive. I really do.
I’m also glad there’s such a thing as Pregnancy and Infant Loss and Remembrance Day. It tells the world there are people like me who remember lost babes like Sweet Olive. It honours women by granting ‘permission’ to talk. It lets me tell you about Olive so you remember too.
To mark the day, I went out and got myself a little something. The pic isn’t true to colour, as my reflection in the silver gives it a pinkish hue. It’s a little Olive branch ring. It’s just a little token, but it, like this day, holds a great deal of meaning for me.
If you want to read a lovely article from the New York Times about Pregnancy and Infant Loss Remembrance Day, click here.
If you’re interested in reading more about our IVF journey, head over to invitroveritas.wordpress.com.
If you found your way here because you’re remembering a pregnancy or infant today, I’m so, so sorry for your loss.
I overheard someone talking to a pregnant woman the other day and realized something. I have a little confession to make. I’m carrying around a little guilt. And it’s probably nothing, but it’s weighing on my mind.
I heard the expectant woman say “the phrase.” I’m willing to bet every pregnant person has said it at some time or another. I said it. I said “We just want a healthy baby.” And, “I don’t care what we get, as long as it’s healthy”.
We all say it – but we don’t really think things will turn out any other way. Do we?
“Hello Guilt? It’s me, Mommy. I take it back. I don’t just want a healthy baby. I want my baby. And she may not be perfectly, ‘healthy’ but I really do want her anyway. Give me my WILLIAMS SYNDROME baby.”
Yep. We don’t really spend much time thinking about what will happen when baby isn’t the kind of healthy we assumed we’d get. And maybe we should.
I know, nobody wants to scare the fragile pregnant people. But I hazard a guess that if we spent a little more time talking about some of the possibilities that lay on the outskirts of healthy, it would take the tiniest bit of the sting out when it happens.
Maybe the world would be a little less shocked when you mention your child has special needs they’ve never heard of. Maybe people’s faces wouldn’t betray the moment when they think “I’m so glad that’s not my child”. Maybe they’d put away the pity face.
When they see the little pink line, nobody ‘wants’ a non-typical kid. They don’t daydream about a future filled with therapy and feeding struggles, and days at SICK KIDS and worry. No one day dreams about the worry. I get that. I also know that people have them – those non-typical kids. All the time. I have one. And you know what? I love her just the same.
I have learned that I was wrong and I’m sorry. I wish, when asked if I’d like a boy or a girl I’d said “It doesn’t matter” and left it at that. Because I have learned that a lot of things that I thought mattered, just don’t matter at all.
Sure, a whole bunch of things I never daydreamed about now consume the better part of my days. But that warm snuggly feeling I pictured, cuddled up close in the middle of the night? Turns out, I still got that part exactly right.