You'd think after these last 5 years with her that I would be used to her making me have all the feels, all the time. I'm not!! This here, what I got goin' is a "I can't believe it's been 5 years since this child has entered our lives and changed so much about what we stand for, who we are and how we love" feeling. It takes me by surprise because each year with her opens me up to so many new experiences. Ones that I feel almost guilty that I GET to have. Ones that I never dreamed I would be a part of. She has brought so much PURE goodness to our world. So many wonderful people and friendships have been founded in the roots of Down syndrome and having Hazel in our lives. 5 years of these roots growing deeper and deeper into my soul. It's gotta a grip on me now, nice and snug. This grip gives me comfort.
Even the really hard, ugly truths that sweep us up and leave us vulnerable. Things that I share with people make me feel blessed and honoured to be on this path. When someone cries with me, shares with me, hands me their new baby, or I simply get to experience a family come together to support and love one another something fierce - that's Hazel feeding me, giving me life. The roots grow deeper, stronger.
I am grateful for all of it.
And yes over the last year of her life, I had to send an almost 5 year old to JK with a diaper bag. For like 5 minutes, I had a pity party about that. Poor her, she's different. Poor me, I have an almost 5 year old in diapers still. The roots tighten. Also, I notice the gap between her and her same age friends expanding the older she gets. School has made that a more of a clear difference, which has me all, "if it's like this now, how will it be in another year or 5 or 10?" Sometimes I have a pity party about that too. The roots tighten. Then when she gets sick I worry so incredibly much that I am missing something because she can't tell me what she's feeling. Matt and I have to rely on our gut. We have to really KNOW our girl. How easily can something be missed? New shoots grow.
Am I including her enough? Roots.
Do I expect enough? Tighten.
Do I give her the right vitamins? Roots.
Do I treat her fairly? Do I give her a pass? Do I hold her to the same equal standard as her sister? Roots. Tighten. ROOTS!!!!
I can't breathe. Sometimes the roots of Down syndrome suffocate me.
Sometimes I wonder if I do the exact thing that enrages me when other people do it - Blame the extra chromosome. Gosh, I hope I don't. But I dunno. I remember at the beginning of the school year, Hazel had a field trip that was on the bus. Well, she had never been on the bus. I was convinced that it was a disaster waiting to happen. I offered to be the parent volunteer for the day. I am pretty sure the teacher was kind enough to understand that I was freaking out just a tad and chose me to be one of the parents to come along. When it came time to leave, I was just about to grab Hazel and throw her in my car. Meet them there. Cause there was no way she was going to understand the "rules of the bus ride." For example, stay sitting in your seat or even STAY IN YOUR SEAT. The teachers (and other parents) though - they didn't think twice. Hazel was going to go on the bus like everyone else and she was going to do fine. It took me a minute and some serious self reflection but I let myself hear them and decided to head for the bus, Hazel in tow.
And you know what???
She rocked it!!! Sat, sang, smiled, looked out the window. She LOVED it!!! And she knew just what to do. I may have let he sit with her EA for fear that she wouldn't actually listen to me but, hey - she did it. Point is the team at the school was 100% confident that she was capable even when I wasn't, they INCLUDED her when I didn't. At that moment I realized, I can't sit here and advocate for inclusion if I don't do the including myself. Thank you teachers and other parents that were so confident in Hazel when I just couldn't see it. Since that day Hazel has been putting me in my place. She learning, growing and proving every single day that she is capable and deserving of a spot in that fully included classroom.
You see this Down syndrome thing is growing with me. I am growing alongside of it. I don't have it all figured out. I hardly have any of it figured out. I don't know all the answers. Actually, I know very few of the answers. To tell you the truth I still really don't like looking too far ahead. I just don't like the uncertainty that lies in the future. I have a constant mantra running in my head to "STAY PRESENT" in order to not worry about something that may never be part of our world. And maybe I'm not doing anybody any favours by sitting in this comfortable, cushy place that I have created for us but I will tell you, that I am continuing to grow. I am continuing to provide a space for the roots and give them a place to flourish and be nurtured. I am growing as Hazel grows. The older she gets the more harmony that exists in the root system. I realize exactly which roots need to be nourished and which need to be pinched off because they are threatening to kill the whole system. I'm learning not to give energy to something that doesn't serve our greater good.
As a mother and an advocate for those with Down syndrome, I do realize that Down syndrome is only a part of what makes Hazel who she is. It doesn't define her, nor is she just like the rest of her friends who have Down syndrome. It's just that when I look back at our lives before Hazel, before Down syndrome - I don't recognize it. We have new friends, new family, different priorities, a new mission, different places to hang out. We've shifted and maneuvered around learning how to accept and love everyone for who they are. And I mean REALLY LOVE and REALLY ACCEPT. While I can sit here and attribute that to Hazel or her making me a mother, I have to give credit where credit is due. For the past 5 years, Down syndrome has enriched our lives, expanded our bubble, it's been the light at the end of the tunnel.
Granted Hazel is that light. She is pure, honest and sweet. That just IS Hazel, not because she has Down syndrome. I do strongly believe that hidden within the seed of this tiny extra chromosome is a certain wisdom, love and light. There is HOPE and FIGHT and DRIVE. There is a WORTHINESS, a CAPABILITY, a DETERMINATION. Most importantly there is something for the rest of us to learn. A lesson that's entirely different for everybody, for each individual person, who has nurtured this seed and provided a space for its roots to grow.
So you see, Hazel will of course always be Hazel first. THAT part of her will ALWAYS come first. She will always be her lovely, unique self and will be celebrated everyday in our home as one of our children. She will also always have this little part of her who has had such a profound impact on all of our lives. Down syndrome. Sometimes it's a silent part, and sometimes it demands a little more attention. All I know for sure is that the last 5 years have been both challenging and full of joy. They have gifted us way more than they have taken. We have laughed more than we have cried. We have been more healthy than we have been sick. We have absolutely maxed out the scales on the amount that we have LOVED. And all of it is because Hazel chose us to be her parents. I'm not quite sure I could ever be even half the person I am today without her guiding me, teaching me, leading me, feeding me and nurturing the roots that hug my soul so very tight.
LOVE has never been enough of a word for the way I feel about you baby girl, but I guess it will have to do. Happy 6th year sweet, sweet Hazel - I do LOVE you so entirely that it hurts in the best possible way. Looking forward to what treasures will lie ahead, Haze.
I got super lucky this year and was able to get a couple of pics from the very moment she turned 5. 9:55 am.