Even though Evelyn is a complete joy in our lives, there are times that her limitations, her situation, her health can be very frustrating, upsetting, worrisome, all-consuming, and over-whelming.
The other day I had gone to a routine ultrasound for Evelyn. After making the necessary arrangements, and having Evelyn coming in on an empty stomach, I was told that there had been a mistake with her scheduled appointment. When I am already taking her in to some sort of an appointment every week, this is not cool.
On the way home, I decided to stop at the grocery store to pick up some stuff for Roger's ear infection. We had recently moved Evelyn out of an infant car seat for she was getting to heavy for me to carry around in her seat. When I got to the grocery store, I carried Evelyn (and her always with me suction bag) into the store, assuming that they would have the shopping carts with the baby seats in them. To my dismay, they did not have even one. I contemplated for a few seconds on what choice I was to make. Evee can't hold herself up enough to go into the seat of a regular shopping cart, I didn't have a blanket or something cushioned to allow her to lie in the basket, and I couldn't put her into a wheel chair for she would slip out. I was deflated with the fact that I had no other option than to just carry her around. Though I was only in there for 10 minutes, it was very challenging for me to carry her around and my arms felt it for the rest of the day. I don't expect the grocery store, or any store, to have special shopping carts for parents of children with needs like Evelyn, economically it does not warrant a reason or need, but it was disheartening as again I realized that life is a little different with Evelyn.
Even my day-to-day in the home has changed. Evelyn does not go anywhere (another room and such) without her suction machine. Carrying around this 20 pound baby that doesn't hold herself very well, along with her suction bag can get challenging. My bedroom and the entire upstairs will often get neglected for I don't have the energy to take my little girl and bag up there to clean.
But one of the hardest things about having an SN baby is the constant, and valid, worry.
In mid-June Evelyn had a surgical procedure done by the ENT because she was growing granulated tissue around her trach, on the inside of her throat. Todd was working the day it was scheduled, which was fine since in the scheme of Evelyn's health, this was like clipping toe nails. Fortunately my sister, who cannot handle hospitals and any sort of blood and such, was able to go to the hospital for the procedure with me.
As I brought Evee into the pre-op I was greeted by several hospital staff members who knew and remembered Evee, including the anesthesiologist, who you only ever meet in the pre-op. The general surgeon and his team all stopped by for they all love Evelyn as well.
After meeting with the ENT, Dr. A - wonderful man, Evelyn was taken to the OR and I went to the waiting room, being told it would only be about an hour at most.
This was the same waiting room that we had waited many times, during very stressful situations. When Evee had perforated her stomach and had to go into emergency surgery, Todd and I had spent several stressful hours in the lonely waiting room by ourselves. This particular day, the Surgical waiting room was packed. There were a number of parents, many with grandparents and family members with them, waiting as their children had procedures done. The room was tense with anxiety as parents worried and prayed for their children. I was able to empathize with them for I had been in that situation, but at the moment I was calm for this was not an overly invasive or stressful procedure for Evee.
One by one parents were called back, briefed about their child's procedure, and eventually taken back to the pre-op, which doubles as a post-op to be with their child. Finally, two hours after Evee was taken to the OR, I was called to go back to the post-op.
Lana, my sister, struggled as we saw Evee. I actually thought she looked pretty good, not that I would want her to look that way every day, but considering she just had surgery and was sedated, she looked amazing compared to how I've seen her otherwise.
Soon Evelyn came to, crying a pitiful, sore cry. I tried to soothe her the best I could. It was then that I started seeing all her limbs more closely. Her IV was in her left foot but each of her limbs had markings of where they had tried to get a line in her (she is a really hard stick). It broke my heart as I realized why her procedure had taken so much longer than expected. I only prayed that she was put "out" before they tried to get a line.
I finally got Evelyn more comfortable as I maneuvered around the monitor cords so that I could rock her in my arms. I suddenly realized how minor the procedures preformed on the other children had been. Children were whining, more for the attention from their parents. The doctors and surgeons briefly talking to the parents, setting up a check-up appointment in 6 months, and discharging the patient. Meanwhile Evelyn was needing to be monitored for a longer time and the ENT sent his nurse practitioner to call his office manager to squeeze Evelyn in for an appointment in two weeks.
I tried to not let this bother me, but in all honesty it did. I wasn't upset that the other children didn't have more severe needs, nor was I upset that the other parents were worried about something I now do not find to be all that concerning. I was upset with the realization that this was my life. That a year ago this procedure on my child would have given me sleepless nights of worry was now something that was low on my list of concerns. The realization that my worries are more heavy and more legit. That realization sucks.
I try to be optimistic and to keep going regardless of the challenge ahead, but sometimes it takes a second to breathe in and out as you realize just how difficult it has been and how much further you have to go.
By the time Evelyn had her follow-up appointment with the ENT, she had grown back the granulated tissue. The ENT said that when he had cut it out he was surprised with how much of it was present. Not wanting to take Evee back to the OR so soon, he wanted to try out some different options.
Here we are, a month later, and the options haven't helped. ENT wants to do the procedure again, and while she is sedated, Evelyn will get her routine MRIs. I am hoping this happens soon, for she is showing signs that she needs both. Though I don't obsess over these things, the constant worry I have in the back of my mind, the constant watching Evelyn for signs of distress or a change in her baseline, can really be overwhelming. There are times that I wonder why I am feeling so exhausted, so depleted, then I realize the heaviness of Evelyn's care (on top of being pregnant) can take it's toll on a person.
Having a Special Needs child can be very hard, but at the same time, I am incredibly blessed.
Our lives have changed a lot since Evelyn has joined our family. There have been a lot of challenges, worries, and extra hard work and situations. But Evelyn is more than worth it. She brings so much to our family and to those around her.
We are the lucky ones.
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