I am sitting here in the VV pool area for night swim with 2 of your siblings. The other one is galavanting around Israel (and soon France) with your father. Uncle and Hay-Hay are back at the house while Isla fights going to sleep. There have been so many times I’ve wondered how you would fit into this equation. Would we still be coming to VV? I tell myself yes, we were always encouraged to leave the hectic chaos of hospital and sickness life to give you and your siblings the best quality of life, but I wonder if that could have continued as you got older. Would you have finally grown? Would you have become mobile and required more supervision than we could offer you here? Would you have eventually been accepted into camp HASC??? What would our lives have looked like over the last 3.5 years? What would they look like now?
I struggle to comprehend life with you here still. I don’t know if it’s for any other reason besides it being just too difficult. I still, after 3.5 years, don’t like to accept the pain of grief and your death. I still, after all of this time still don’t like to think of you not here with us. It still takes my breath away. It still makes me panic. It still is just too hard. I know, I know, it is likely to continue. I get that. Well, I try at least. I get it about as much as I understand why you had a mutation on your CDKL5 gene, and why you were so affected by your mutation. I get it about as well as I understood AP physics…(for those who know me, that should explain my understanding).
Life continues to move on, and so so quickly. I watch your brothers play together, and it makes me smile that they have each other. Their age difference is starting to become less apparent as they play around. Where would you have fit? The thought makes me broken, almost as broken as I am now, but that wasn’t even possible to comprehend while you were alive. I mean in ways it was as I expected, in others, nowhere near.
Your siblings continue to grow up. You won’t. You don’t. You haven’t. You’re still stuck in my mind as a 4 year old. I still hate that we celebrated you turning 5. You never got to in real life, just the pretend life we tried to have for you. Your siblings continue to drive me crazy and each other. You hardly did that. Your siblings more often than not act as if their lives are normal. I wonder how much of that is a facade and how much is real. I am afraid to know the answer to either of those questioning thoughts.
I have kept myself busy this summer working. Something I didn’t and haven’t done any other summer. There’s a part of me I think doing it to ignore your absence since everyone is at camp. There is a part of me doing it to surround myself as much as possible in a world you once encompassed. It’s a double edged sword though. I love working in a place you spent a good portion of your life. I sometimes HATE when your name pops up in directories when I least expect it. I remain torn on if that’s a message from you or stupidity from the systems that for some reason haven’t erased you from them. But one day I am sure they will and I wonder if I’ll notice and it’ll hurt me more, or if I won’t even notice? Which will be better?
There is so much more we have been able to do over the last 3.5 years since you left us. A part of me wonders if you left us for that purpose? Did you feel like you were holding us back? I can’t say you didn’t, but I will say I didn’t mind. I mean there were some hospitalizations that were untimely, and you knew how to steal attention from your siblings. There were definitely other ways you could have gotten aba and i to spend alone time with you, but you preferred it to involve lots of tubing and medical interventions. I don’t miss those. I do miss the people. I miss being around people who got that life, because so few get the one I’m living now. That’s been a challenge.
I feel like you are lucky because minus my fear that you aren’t healed and that you miss us, I know you are amongst some amazing souls. I am dreading the distance from your death getting longer than your life, but I know that amount of time will be here sooner than I’d like. How will it be that in just 6 months it will have been 4 years from your death and you were 4 when you died. I will get smacked with that timeline and then your 10th birthday all within a week of one another.
I wish 3.5 years ago I would have known that I would feel essentially the same but yet some times worse. I wish the peace I felt 3.5 years ago was still surrounding me knowing and believing you are in a better place. I wish the comfort I felt at you no longer suffering would continue to bring me comfort now…it doesn’t, although I try to argue with myself that it does. There is little I can tell myself of your death that brings me calmness. I am happy your siblings get to live a more consistent life and that they get to have more experiences, but I’m not sure it is worth the expense of your life? I could again justify it to be the case…but I think they were living fine lives with you here.
Anyway baby girl. I miss you beyond words. Your loss is still felt by so many and your ema is still broken without you. There is still a huge void in our lives in case you ever doubt that and I pray that you really are flying freely and getting to do everything your earthly body didn’t allow.
If you visit, please don’t bring any water, we are all good with the houses we own…but I’d love to eventually see you in my dreams because 3.5 years and 5 hours and 27 minutes has been long enough.
Until next time.