Joy, Pain, and All the Complicated Feelings In Between
I’ve been reflecting on the last two weeks since Yasmeen got home from camp. SO much happened while she was gone and has happened since she got back that it’s hard to wrap my head around.
Yasmeen had an incredible time. It was her first time at overnight camp and her experience was everything I’d hoped for as a parent. She got a reprieve from the intensity of our home, a chance to disconnect from her phone, reconnect with nature, meet new friends, and have an outlet through art and singing.
While there, she said she felt like a NORMAL KID. She loved her cabin and made new friends who she felt genuinely enjoyed her company (yes, she has her insecurities like any 15-year-old). Though she originally planned to only tell her counselor about Soraya’s health, two friends saw her crying after she sang a song that made her reflect on her relationship with Soraya, so she also opened up to them. She said she felt connected to her campmates and instructors, united in the knowledge that “we are all going through something.” (It’s true, we are!)
While Yasmeen was gone, life continued moving at lightning speed at home.
Soraya’s pain escalated, necessitating a whole new plan for pain management. We had to wean her off her pain patch and try something completely different. This new plan requires close monitoring of her symptoms, frequent dose changes, and an increased level of communication with our hospice team. We now have our doctor’s cell number and communicate daily. The intensity of this change will definitely take some time to process.
I had a lesion on my routine mammogram. For a little less than 24 hours, I was TERRIFIED. Thankfully my second image was clear. (Yes, I am now going to tell everyone to get your mammograms!)
Leena got to experience lake life with our dear friends and go tubing for the first time! We were at the lake house when Soraya started her new meds, and Safi and I hoped she would get relief while Leena could just have FUN and be a kid.
The Make-A-Wish film about our family won an EMMY! Leena and I were away when it was announced and I was wistful that our family wasn’t all together…especially knowing that Safi was at home titrating pain medication with Soraya while I was at this beautiful home with Leena and friends.
We bought Yasmeen a car! It dawned on us that learning to drive in a GIANT electric van that can accommodate Soraya’s wheelchair may not be the best…and Safi got a great deal! Once the paperwork was all signed and the car was officially ours, we decided to surprise Yasmeen with it when we picked her up from camp. It was the best! Everyone in our family names their cars, and she named hers Dole Whip in honor of our Hawaii trip and eating it every day at camp.
Once Yasmeen was back home, she was immediately immersed in Soraya’s new med schedule and all the mood swings that came with. From happily playing dolls with Soraya to getting yelled at seemingly out of nowhere, the highs and lows were in full effect.
Yasmeen said she was grateful that I told her before camp that there was a chance Soraya’s pain meds would be changing, and that the heads up was helpful despite it being tough to come home to. She said camp felt like a dream and a break from her reality. She’s already decided she wants to go back.
While Soraya’s new meds have been an adjustment for our family, they’ve given her these incredible glimmers of how she was years ago.
She had not had the energy to play dolls with her sisters in over a year before beginning this new med. To have moments of being pain-free allowed her to shop, watch Noah Kahan’s concert on livestream, do chores like organizing granola bars…and then have her body suffer at night and into the next day from all she did. :(
We are hopeful that we will get there. To her being pain-free, comfortable, and able to do some things she enjoys.
As we settled into Soraya’s med change as a family, Leena had a doctor's appointment to check in on her anxiety. Before the appointment, I asked her how things were going and she said “Good.” I asked her if she was doing ok with her therapy and medicine (yes, I am promoting mental health care with medication and therapy!) and she said yes…then the doctor asked the same questions. She responded with, “I am feeling more anxious about things going on at home and school starting. I would like to up my medication.”
I was floored. I had just asked her and gotten a totally different answer. The lesson here: the kids are not ok– have someone else check in and trust them when they say they are struggling.
Even just writing this all down makes my head spin. These last two weeks have been so much. I can’t help but realize how much it all intersects…the JOY, the PAIN, and all the complicated feelings in between.