3 years and 1 week ago my precious little baby girl was diagnosed with a degenerative genetic disease – Cystic Fibrosis – it’s just as scary as it sounds. Last week, I kind of kept waiting for me to lose my shit – I am very “in tune” with anniversaries – whether they are good ones or bad ones and last week I stayed pretty level.
The Universe, serendipity, God, Our Mother Earth… whatever/whomever you want to call it was sending me a message so loud and so clear I couldn’t help but hear it and I am so grateful that my heart received it.
We were scheduled for a clinic visit – almost to the diagnosis anniversary date The whole way driving down (it takes us nearly 2 hours to get there) I was really paying attention to my emotions and analyzing and interpreting and really thinking “huh, I’m really okay”…
Once we were pulling into the parking lot some of the emotions came rushing back – one day, when I am a bazillionaire – I will provide a valet service at the Alberta Children’s Hospital – no parent should have to suffer the stress of finding a parking spot under such duress… This time, I found a spot so close to the entrance I triple-checked that it wasn’t a handi-capped spot or reserved for a physician or something. It was like the Universe was giving and taking… here’s a flood of shitty memory… so sorry, here’s a kick-ass parking spot!!
The girls were so excited to see the “rainbow cow” and all the beautiful artwork – oh the resilience of children – oh the perspective of children – regardless of the situation they will always find something beautiful, something joyful… someone needs to put that in a bottle and sell it (that would make me a bazillionaire for sure).
So, Rowan and I said good-bye to Reese at Emily’s Backyard (free play place for patients and siblings) and made our way up to the Clinic. Again, this whole time I am checking in to make sure I am doing okay – and I was.
So, on this day we see Dr. Montgomery – we have not seen Dr. Montgomery since diagnosis day – almost to the freakin’ day 3 years ago… I was like, “Come on, give me a break!” but again, I was okay, I really was. We discussed at length the fact that the evidence is strong that Rowan does have an issue with her liver enzymes and for the first time ever I felt “in control” well, as “in control” as you can in this situation. I asked questions about the Endoscopy and the Bronchioscopy (that we might as well do when she is under) – we talked about performing as many procedures as possible while she is asleep – Rowan is such a sensitive little girl and every procedure leaves her a little traumatized.
At the end of our appointment Rowan received the start of her necklace for the “Beads of Courage” program… as Melissa, her nurse, was talking to her about it a new wave of sadness washed over me. Now we start the journey where Rowan knows that she has Cystic Fibrosis, that she knows it is not fair that she is just a little kid, that this makes her different from other kids… and in the same breath I see the reason that I was so determined to heal my heart, to patch up my soul, to find this place where I am “okay”… much of this determination was for this very day – for her – it was so that when she reached this point I could help her and none of how she was coping was about how I was coping. In some small way I could understand – I could validate how unjust it feels and find ways to show her some silver lining.
On the way home, as the girls slept in the back and it was so quiet and peaceful – the tears came – once again, not the fast and furious of days gone by – a gentle cry – a reflective cry. I was crying for that mama 3 years ago – so scared, so sure she was not up to this task, so confused, so shattered. I remember that people tried to hug me that day and I pushed them away… I didn’t want to feel … I didn’t want to lose it… I didn’t know if I could come back if I let myself go. Now, I want to hug that Kelly – and I want her to accept it I want her to collapse into that hug and just hurt for a minute – I want to be able to flash 3 years ahead for her – for just a second – where she can know that one day she will be okay – that they will be okay – that in fact, this day will set in motion a journey for her and her husband – that will make them so determined to be the best people that they can be…
No one asks for something like this to happen, no one dreams that one day they will have a child that will walk a path more difficult than I care to imagine… No one asks for anything bad to happen in their lives but you do have the power to create good in the midst of that. I will never be sanctimonious about this fact – it took me a long time to get here – but I do hope if you or someone you love is going through a hard time that the power of that fact can help you/them through. I think that is the closest to the meaning of life that any of us will get…
life IS what you make it,
love IS a good chunk of all you need,
healing a broken heart WILL ensure that your life will be open to attracting all of the good things that you deserve.
We are not here long enough to wallow for too long. Be mindful of your grief, be careful to not let it dig it’s sad little talons too deep into your soul. Dream, dream, dream… even when you are at your saddest, angriest, most depressed… try to dream, try to imagine a time beyond your grief… even just those simple little thoughts could set things in motion to move towards healing your heart. And then? One day? You’ll realize it is 🙂