When Tanya was a twenty-year-old newlywed, she and her husband received custody of her thirteen-year-old sister. Tanya had left home at sixteen. Her sister’s arrival began Tanya’s caregiving journey. Tanya and her husband cared for her sister until she went off to nursing school. They still joke about how they know what to do with teenagers, because they had a thirteen-year-old first.
Tanya has six children at home now, and was a full time caregiver from the time her second child was born for about thirteen years. When Tanya’s daughter Emery was born, she started having seizures right away. They took her up to Primary Children’s Hospital to test her for several days. At that point the tests came back normal, which was hopeful.
Often when children have seizures, the brain scans are normal. This sometimes means children will grow out of having them. As time passed, though, Emery didn’t hit normal milestones. At the age of one, she was barely able to roll over on her side. Doctors began doing genetic testing and discovered that she has a rare condition called CDKL-5. In high school, Tanya was more of a math person, but with Emery’s condition she has turned a lot to science. She now knows way more about genetics than she ever thought she would. She explained that Emery’s X chromosome has a missing piece in one of her genes that produces proteins, and so Emery’s body produces dysfunctional protein for her.
When Emery was diagnosed, there were about 200 children worldwide who were known to have the condition. No doctors really understood her condition well. They could not tell Tanya how long her daughter might live. Tanya responded by becoming an expert in Emery’s condition. Soon after the diagnosis, CDKL-5 was added to the seizure panel, and many other children were found to have it. Emery was the first in her home state to be diagnosed with it, but there are now five children known to have it there.
Emery was seven years old at the time of our interview, and Tanya still provided all of her basic care. Emery just learned to hold a bottle within the last couple of years, but other than that Tanya feeds her, bathes her, and attends all of Emery’s physical needs, including feeding, bathing, elimination, and even moving and transportation. Emery does not walk or crawl. When Emery learned to hold her bottle Tanya said it was liberating, because even those fifteen minutes let her do other things she needed to do.
Emery attends school in the severe special education department. She gets to sit with the class for reading time, and she spends time with the other kids for short periods every day.
Tanya loves taking care of other people. She says that’s probably why she chose an online mentoring position for work. She now works as a part-time mentor with Utah Online Schools. She says, “It’s really fun. It’s a good fit for a lot of kids. It customizes their education. I’m really passionate about individualized education and different paths because no two people learn the same.” She loves that the online school gives kids a more personalized choice for their education.
She finds her work meaningful and worthwhile. Tanya said, “In Emery’s case, as a parent, as a mother, it’s a lot harder to feel that sense of accomplishment, but in Emery’s case I know that without my help she can’t survive. She can’t take care of herself. It definitely gives more purpose and meaning to the caregiving.” She knows her other children need her as well, but they also like to be independent, which is very different from Emery’s situation.
The hardest thing for Tanya has been when she had to watch her daughter suffer and was not able to relieve her. That is right up there with sleep deprivation. Providing constant care can really exhaust her physically and emotionally, and adding sleep disruption to that is a tough challenge.
Even though her caregiving is hard, Tanya knows it is what she is supposed to be doing. When Emery first started having seizures, she would stop breathing. This terrified Tanya, and Emery would have the seizures between six and ten times a day. Tanya said,
It was this constant terrifying thing that she was going to die. In those moments, those who are religious pray – and pray really, really, really hard. In answer to some of my pleading I was reminded. I had a disabled brother growing up, and I remember as a child we also had disabled foster care adults, so handicapped adults came into our home. I remember as a child how sad it was that parents would give up their children just because they were handicap. And so as a child I had prayed to Heavenly Father and told him to send them to me, because I could love them. Then I forgot about that, because who knows how old I even was. I was probably eight – young enough or naive enough to not know. It broke my little girl heart that these kids … that I just thought, “Heavenly Father, send them to me and I can love them.” So, my daughter’s having seizures, and she’s not hitting her milestones, and I was in this really, really dark sad place, and after I was praying I had this thought come to my mind, and He said, “You promised me you could love her.” It was interesting how that changed things for me. It was still hard watching her suffer, but I remembered. I did remember that moment. I’m like, “Really? Of all the prayers to answer…” That moment reminded me that these kids need to be loved. I knew I could do it then, and so I knew I could do it now. It kind of gave me strength to trust that I could do it. That was definitely a reassuring moment that helped.
Tanya has a great support network. Her husband is really supportive, and his parents live very close. She sometimes thinks Emery loves her grandma more than she loves her mom. Tanya is grateful for that connection. There have been times when Emery would cry and cry, and wouldn’t be consoled. Then her grandma would come and hold her, and that would soothe her. Tanya says, “She just has this special connection with her grandma. They love each other, and it’s wonderful.” Her husband and in-laws help tend Emery when Tanya needs to run errands or clean the house. They provide moral support. They help her other children, who also have to live with the complications of Emery’s care needs. Tanya loves how their grandma is able to make sure each kid gets special attention.
I loved the wisdom Tanya shared with me. She said:
This is something I’ve had to learn over and over and over again. The most important thing we can do is stop being our own biggest bully and cut ourselves some slack. Even just as mothers, if you have typically developed children, I think we put too much on ourselves. We don’t give ourselves enough credit, then we beat ourselves up. I think the number one best thing you can do is recognize that you are only one person, and you can only do so much, and let go of the things you can’t do. I have beaten myself up for everything. I’ve beaten myself up for not doing enough therapy for Emery. Then when I’ve been doing a lot of therapy, beating myself up for not spending enough time one on one with my other kids. Everything you can beat yourself up for, I’ve done that. I just finally got to the point where I realized, I am one person, and I can only do so much. Life is just so much better when you just stop being your own biggest bully.
We would never stand by and watch someone bully the way we bully ourselves, but we do it, and we do it viciously. I had to let go of that. Just be like, if I don’t get it done it’s okay. I can only do so much. That applies to everyone, you know.
I love Tanya’s insight. She is so kind to others. She totally deserves kindness herself. Thank you for sharing your caregiving story with me, Tanya. I honor you.