Williams Syndrome Wednesday: The Joy Edition

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.

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