Friday, December 31, 2021
Monday, December 27, 2021
Monday, December 20, 2021
Monday, December 13, 2021
Sunday, December 5, 2021
Monday, November 29, 2021
Monday, November 22, 2021
Wednesday, November 17, 2021
Tuesday, November 9, 2021
Wednesday, November 3, 2021
This month I found myself able to speak out on matters that I once would never have held back on, but have since you have been gone. It was the first time I was able to speak out against illegal handicap parking. Something so simple, but something that I have shied away from as a protective mechanism. I didn’t speak to the people directly, but I did ask the owners of the area to address it and they sent out an email. To be honest, it did little to stop all the entitled people who feel dropping their child off at gymnastics warrants the use of a space designed to be used by those needing to be closer to an entrance. However, have no fear, my next stop is calling the local police department and asking if they have the resources to come and sit in the parking lot during pick-up and drop-off times. I am just really trying to do my best to not start altercations, which I know is where this is headed.
This month I hardly was able to look at your pictures, and I haven’t been to your grave in an entire month. I managed to be able to sit there the last time for over 2 hours, so at least once I got there it wasn’t as horrible. They fixed your bench, it looks amazing. I also have to apologize because I didn’t make it there today either. I didn’t paint your rock yet either, but I will. I know whether I avoid these things or not doesn’t change the reality that you are still gone, but attempting to pretend is something I have gotten fairly good at.
This month the anger came back full force. Maybe it never really left, but I just find myself really frustrated over you not being here, over you having had to suffer, over it feeling like so many people have moved on from you being here, over organizations dropping us when at one point they used us for whatever benefit they could gain from having us promote them, over life moving on and forward, over life being normal, just angry over it all. It’s just all so hard.
This month was just another on this never-ending grief journey, but also another month that you were free, not suffering, and able to be comfortable. Our roles have switched, and I wouldn’t have it any other way, except if I could have had you here with me without that horrible CDKL5 mutation, but I suppose that’s a discussion for an entirely different life.
Until next time.
Monday, November 1, 2021
Monday, October 25, 2021
Tuesday, October 19, 2021
Monday, October 18, 2021
Monday, October 11, 2021
Monday, October 4, 2021
Today closed out 87 weeks of your absence. This last week we finished the last days of Sukkot and your siblings finished their fall break. Ema's started today (wahoo!), but more on that next week. We spent our first full holiday at a different shul in a different community. To say we have been having a wonderful time here would be an understatement. It brings me such joy to have your siblings' friends walk over to either play at the house or pick up the one they came for. To add to that, ema is also thoroughly enjoying being within walking distance of her closest friends. It has been most challenging for aba, but he is not the biggest fan of any type of change.
We celebrated our first Simchas Torah without you. That was a bit tough, at least for aba and me. Some of your siblings reflected on your absence. I remember when aba was afraid to take you to the party the first time. He said you would not like it. I asked him how he could know if he did not try, and he humored me and took you with your siblings. The main difference between anyone humoring me when it came to you, was that it always resulted in my being right. (I will give myself that shameless brag). It makes me smile ear to ear to think about you in your wheelchair with your father pushing you around during hakafot dancing with everyone. There was even a year a friend of Meena's broke your wheelchair sitting on it with you. Small price to pay for us to make sure you were not slighted any experiences. You LOVED this holiday. You LOVED to be out there with everyone. You LOVED the attention. Last year, because of corona aba and I were relieved to not have to experience our first Simchas Torah without you because it did not happen in the same way it had while you were alive. This year...for me, I was able to avoid the first night because only aba went back to our usual stomping grounds. It was not easy for him. For me, the change made the blow softer. I teared up myself on the second night watching when aba put Meena and Noam on his shoulders, and when I watched him walk around empty-handed, no wheelchair within his grip.
Being in this new environment has led us to new experiences. I am sure that was your intention in whatever hand you played in flooding out the only home you ever knew. It is an amazing opportunity for us to give your siblings, for them to be near their school friends, and within walking distance of their school. It is a step in moving forward for sure, but there are times when I feel like I am a heavy weight stuck mid-step. Like when people who do not know us because even though we have lived in Phoenix for 13 years, we have not lived here, where we are, for 13 years, and I have to answer basic "how many children do you have?" questions. There are conversations that occur in passing about our 13 years here in Phoenix, I will admit with an apology, I sometimes leave you out of the story. There have been times where I have met some amazing new to me people and I talk about you non-stop and let them know about "Sonya's Story" and how my blogging began because of you. I am still finding my way through this mirky grief water that is for certain, and another week under my belt has not changed that.
Anyway, baby girl. I miss you, love you, and hope you are having fun, playing hard, and staying safe.
Until next time.
Sunday, October 3, 2021
Monday, September 27, 2021
Today at 1:08pm, 86 weeks will have passed since we last were together. How has it been that many Mondays since you were here. Why does part of life seem so normal, and the other part seems like I am living on an alternate universe?! Sometimes saying the weeks make it seem so far away, and then this weekend I told someone almost 20 months and they responded with a huge sigh and said, "that just happened, it is so fresh". I never know what the time frame will mean to another person, it is more interesting to me than anything else. But also, in the split second it takes for a reaction to occur I find myself holding my breath afraid of what they might say. In this case I felt a quick sense of relief and then in my mind realized how recent it really was despite how long it feels.
This weekend someone asked how many kids we have. I paused and decided to phrase my answer in a way that I had secretly hoped would be overlooked, but that kind of backfired. I said, "I have 4 here". In my mind it was an honest answer, and I assumed the "here" part would be unnoticed. Instead, it was followed up with, "here? are there children somewhere else?". Which resulted in laughter from everyone around including myself and aba, but then I felt so badly when I had to interrupt the happy mood with, "well, umm, actually, we have 4 children here, we had 5 children, we had another daughter, but she died". I really dislike how the mood shifts from cheery and festive to morbid in a matter of seconds. We spoke about you for a bit, which is always nice, we told them how Bear Pines is completely in your honor and inspired by you. Then someone asked what was on aba's socks and we said, "oh, so the daughter that died, it's her", and then aba explained how he wears you every weekend because it is how he keeps you around with us.
Tonight, is Corr's celebration of life. We sadly will not be able to go because of the beginning of last days of Sukkot, but hopefully you are able to stop by. I hope you girls found each other and are having a blast living your new lives together. Miss Brittany and I miss you both ridiculously!
Your siblings finished one week of their 2 weeklong fall break. It has been a bit insane, except I really cannot comment so much because I have been working and will be besides the days I have taken off for the holiday's until they go back to school. Then it will be my fall break and they will be back in school. We finished our first full week in the new Airbnb, minus this weekend because we went to Bear Pines. Tzvi’s hockey games start soon, and we sadly will not be able to go away for the weekends as much as I would like, but we do have a trip planned to Chicago for one of his tournaments and I am pretty excited about that.
Anyway, my love. We miss you beyond words and hope you are safe and doing well.
Until next time.
Friday, September 24, 2021
I was recently asked if I could describe my grief as a weather pattern what would it be. The idea gave me pause and a good inner chuckle. I considered my answer while a myriad of thoughts was flooding my mind.
Maybe a tsunami? Does that count as a weather pattern? I don't think so. Maybe those times that low- and high-pressure systems come together? A thunderstorm with atrocious thunder and lightning, but then all of a sudden it is over? A sun shower on an otherwise beautiful day? A lightning storm? An Arizona Monsoon, where it comes in quickly and leaves just as fast? How do I answer this question?
I began to speak but as I always feel when it comes to trying to put my grief into words, I stumbled over my words. I feel like I am in a state of confusion. I feel like my weather pattern is all over the place, but the trickiest part is that I am not even aware of what it may be or could be until it is actually happening. I feel lost in a horrible storm and wish someone would join me in it, but I want to be in the storm by myself, so I don't really want anyone around. I want to ignore the way the rain comes out of nowhere and how loud the thunder is and how scary the lightning is. I wish I could have a personal meteorologist, someone to give me some warning over what potentially could be on the horizon and how long it may last. Maybe then I could give warnings to others so they would know the right thing to do.
The truth is unless you truly live with the grief of losing a child it is hard to conceptualize the complexity of the inner turmoil. The panic of the world forgetting your child, the guilt over not wanting to think about your child, the fear over someone overstepping but the sadness of them not taking any steps at all or not enough. For me personally, the weather pattern is not quite known, but one thing is for certain, it is always, always, unpredictable.
Monday, September 20, 2021
Monday, September 13, 2021
Wednesday, September 8, 2021
Friday, September 3, 2021