Over the past 8 months or so I have come to expect that I will continuously cycle through the stages grief. I am certainly not comparing my experience to that of a physical loss of a child, but there is a definite loss of the child I "anticipated" Sonzee would be before, during, and shortly after my pregnancy. This entire experience has given me (and probably Sam) a new meaning of female hormones. This roller coaster ride certainly lives up to its name, that is for sure. One minute I am happy, in a complete euphoria, only for it to be followed 5 seconds later by a tantrum or an all-out cry fest over something completely trivial.
On Tuesday morning, I got up earlier than usual and had such a productive morning. I threw in a load of laundry, attempted to unpack from our trip, packed lunches for school, set up breakfast for the older kids, got myself ready in record time, got Sonzee's older sister ready for dance, and packed all of the items we would need for our day with time to spare. I ended up having to wake up the Sonze as she was sleeping off a middle of the night seizure and of course she was not having it, so we ended up having to squeeze in a mid-morning boob before running out the door. Pleased with myself for remaining on schedule, I headed to Starbucks so I could pick up my morning coffee to enjoy while watching my middle daughter dance.
Following dance, with two lollipops in hand, Sonzee's sister was happy to tag along with us to a second opinion optometrist appointment for Sonya. I had cancelled this appointment about 6 weeks ago, and then had doubts that maybe we would be missing another valuable opinion regarding her eyesight, so I rescheduled it. Needless to say I won't be second guessing myself in this department again. I tried to put a positive spin on what I felt ended up being a waste of time and money, by saying that at least it has given me 200% confidence in our amazing ophthalmologist, and I really should consider getting an honorary certificate in vision education.
With time to spare before heading to Movement Lesson I decided it was time for me to buy a new iPhone charger as my phone has stopped responding to the knock off chargers (yes I know, I am the only person that this seems to happen to), and so the girls and I headed to the Apple store. After circling the shopping center for about 30 minutes, I found a great spot. Sonzee was taking a nap, and I loaded both girls into the stroller. The first store we headed to was of course the Apple store so I would not forget the intent of this pit stop. I found the charger and it just so happened to be next to an iPhone holder that I could attach to the air vent in my car, so I figured I would buy myself a Hanukkah present from Sam ("you're welcome hubby"). I paid for the items and then we walked a little bit outside. I came across a yogurt place which happened to be kosher (I know jackpot!) so I got Sonzee's older sister and I a yummy treat. We sat outside and ate until it was time to head over to Sun City.
We got back to the car, I loaded both girls in, went to my bag where I placed the charger and of course, it was not in the bag. The vent holder item was there but no charger. Commence anger and tears. I glanced back along my path and it was nowhere to be seen. I pulled out and drove around the area, retracing my steps and nope, no charger around. I was so upset. I called Apple, and they opened a case for me and told me to go back to the store and they would see what they could do. Of course I had no time to accomplish that task before Movement, so we continued on our way. By the time I got to her movement lesson I was ready for an all-out cry session. As I walked up to the building, I was talking to Sam on the phone and he said, "You know Randi, it is just a charger". Yes, I agree it is merely an overpriced accessory, but what is represents is so much more.
This dumb plastic iPhone charger is how I feel about life. I have ZERO control about anything and everything, CDKL5 related or not, but especially in regards to Sonzee. Everything these days I feel is spiraling out of control. I can only compare it to two things. The way Alice in Wonderland falls down the rabbit hole and the quote:
Relationships of all kinds are like grains of sand. Held loosely with an open hand, the sand remains where it is. The minute you close your hand and squeeze tightly to hold on, the sand trickles through your fingers. You may hold onto some of it, but most will be spilled. A relationship is like that. Held loosely with respect and freedom for the other person it is likely to remain intact. But hold too tightly, too possessively, and the relationship slips away and is lost.
I feel in a sense I am trying too hard to hold onto what I anticipated for Sonzee before she was born. I am trying to make her do the things every other typical 9-month-old does. I still find myself wishing and hoping for her to wake up and just be a typical little girl. I can honestly say I am holding on way too tightly to my desires for normalcy, and in doing so I am not respecting Sonzee with CDKL5. From my current position I do not know if I will ever be able to fully wrap my brain around what G-d has envisioned for my little bear. However, maybe if I open my hands a little I will not feel so suffocated. Maybe if I try to embrace who she is destined to be, whether it means she will need a feeding tube, a wheelchair, or a communication device I will find some peace. Maybe if I start to truly accept the reality of our situation, I will actually agree that it is "just a charger".
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