Dear Sonzee,
It has been 4 weeks since I last wrote you a letter. I am honestly a bit surprised because it feels like I missed so many more than just 4. Weeks 186, 187, and 188. Technically I could get away with writing you one during week 189 because that started just yesterday.
These last 4 weeks have been avoided on purpose. I am entering the time of year where I'd rather not deal with your absence. Truth be told even though I don't send you the letters that write themselves in my mind, it is impossible to avoid your absence. That is felt more and more every single day, but when I sit down to put my words onto this electronic paper, the tears fill my eyes and the weight on my chest becomes heavier. The breaths are hard to come by and it feels like someone has placed a 30-pound weight (well honestly it could even be 5lbs because we know I am not the strongest person) on my chest. The pain becomes difficult to ignore. It is the same pain that is always present, but I have mastered pushing it down and not feeling it. That is a benefit of it being 3.5 years since you physically left.
The last 4 weeks included another CDKL5 child dying. A fact that I have tried hard to also ignore, because knowing another parent is on this journey makes me sick to my core. Me transporting back to the beginning is unavoidable when a CDKL5 death happens, so the avoidance of everything becomes two-fold.
Today there was a meeting at work and the mom and I have followed our children's online journeys for some time now, so I said how it was nice to finally meet in person. She replied that she stalks me to read my journals, and I mentioned how I haven't written one in a while. I felt like I needed to share an excuse. I doubt she needed one. I am sure it was just for me to justify my actions aloud. It isn't an excuse per say either, it is more of facts. An excuse would be me saying that I don't have the time, or that your siblings have me busy, or work, or an endless list of reasons; because the reality is that I am making a conscious choice to not write to you. A sad reality, but the reality of life after your death, because it is easier to avoid than to confront the grief.
Over these last 4 weeks I did manage to visit your grave and clean it up while placing new rocks and items for you. I have recently come to understand that the grave really is meant for the grieving and not for the deceased. I used to go for hours when you first died to feel closer to you, and now I know that you aren't ever far from me so I dont need to go to feel your presence or to be a good mom. I know you are with me and I know that if you need me you will find a way to make that clear to me. Growth? I think yes. Painful? Yes because it means it's been that much time that has passed for me to learn another #lifeafterSonzee fact.
Another #lifeafterSonzee fact, September begins my deeper grief depression. It signifies the start of the end of your life, or rather when I started to search for answers I would never find. It was the season I started to document all of your changes to build my case to prove something wasn't right, to attempt to prove that my gut was right and that something was going wrong inside of you. The easy thing to do would be to remind myself that it wouldn't matter if someone agreed or if I proved my gut earlier; but my body and heart wouldn't listen to my mind in any case, even if I told myself that until I was blue in the face. This is just how it is; this is just how it will be, and that is okay. This is just how it has to be.
Over the last 4 weeks I have been asked if I am still sad over your death. I have been asked if I am not happy knowing that you are peace. Yes, to it all. I am and will forever be sad over your death, and the only solace is that you are at peace, but it won't change the fact that children aren't supposed to die before their parents, healthy or not. That isn't how life is supposed to work. I will give g-d an out on the whole CDKL5 diagnosis and special needs, but I can't accept the whole death part. That part is pretty much unforgiveable, despite the whole G-d has a plan I don't know concept. There is no plan involving your death that I will ever be understanding of, even if in the end it makes any sort of sense.
The last 4 weeks had one of your siblings ask who was going to make your bedroom when Mashiach (Mesiah) comes, one of your siblings tell me that a bridge was built and gotten over in regard to your death (and then eventually corrected to admit that wasn't the case), and a sibling ask to read their Sonzee and Me book to sleep at night. I won't say which siblings or if they were all different, but everyone is on their own #lifeafterSonzee journey, and I just get to be there to support them without my feelings interfering. I don't know what it is like to lose a sibling, and I make that very clear to them. I also tell them whatever they feel is ok and right.
The last 4 weeks have had me spend more time at FBC. I tend to keep you a secret while I work. Not because of another reason besides that it isn't necessary to share. However, there are times when I feel it helps a parent or a nurse understand that I have the best intentions of any possible person when it comes to assisting with communication because I have been a parent and caregiver to a child with significant needs who also sent their child to school with a 1:1 nurse. It sometimes serves a significant purpose to share about your life and death. Thank you for everything you taught me and continued to teach me.
Anyway Babygirl. I know this doesn't make up for the last 4 weeks, but I hope you can forgive me for being in the place I am in terms of grieving your loss. I miss you beyond words. My heart wishes beyond words you'd come visit me in my dreams.
Until next time.
Love always,
Ema
