It’s Diabetes Awareness Month, as well as National Family Caregivers Month, so Semisweet is sharing its second guest blog, an interview with a parent caregiver, Angie Ashe, mother to Elliot and Fiona. Elliot has Arthrogryposis and Fiona has Amniotic Band Syndrome.
Elliot & Fiona
How would you describe your children’s conditions?
When my first daughter Elliot was born, her physical disability was a delivery room surprise. When we adopted our younger daughter Fiona two years later, her physical disability was completely planned. Because of our experience with Elliot, my husband and I deliberately set out to find a daughter who could benefit from all the great specialists we met along the way. Elliot has Arthrogryposis, which means that her limbs did not develop properly in utero. She has very limited muscle and range of motion in her limbs. She also happens to be non-verbal. Fiona has Amniotic Band Syndrome, which resulted in an underdeveloped foot that had to be amputated and missing digits. She also happens to talk non-stop. Neither girls require any medication or special diets. Their needs are mostly physical.
What care for your children is required, and how do you and your partner divide this care?
As their caretaker, I do a lot of heavy lifting. I don’t mean that metaphorically. I lift a 45 pound 5-year-old (who often fights being carried if it means she’s going to bed or the bath), a 35 pound four-year-old, and a wheelchair in and out of my trunk all the time. It took some getting used to, but I have a pretty strong back and no need for a gym membership. Most parents get the privilege of fighting with their kids, telling them they’re too old to be carried. I get the privilege of helping my five-year-old walk around in her leg braces, a feat we were never sure she’d accomplish. I’ll take all the work involved in helping her up and down the structure at the playground just to hear her giggle when she goes down the slide.
My husband Rob and I both work in our family. He works full-time as a Television Editor. I work as a Children’s Librarian, but I only work part-time for the kids. Because of my schedule, I am the parent who takes the girls to every doctor and hospital appointment. When your children are as complicated as my children, that equals a lot of appointments. There’s the lower orthopedic surgeon, the upper orthopedic surgeon, the cardiologist, the neurologist, the neurosurgeon, the urologist, the ophthalmologist, the developmental pediatrician, and the orthotist. Let’s not forget the offices we’ve visited just for fun, like the audiologist and the optometrist. Plus, the offices all kids have to go to, like the pediatrician and dentist. In between all this, there have been many visits to the hospital’s hand clinic for nighttime splints to be made and adjusted and the casting clinic for serial casting of the legs. Plus, there are the many, many hours spent in OT, PT, speech, social skills therapy, and behavioral therapy.
Having listed all these, don’t think for a second that I dread any of this. I actually like taking my girls to their appointments. I show up early with snacks and games for everyone. I’m that mom. If this is going to be their life, it’s my duty as their caregiver to make it fun. My kids know everyone wherever we go. The staff at all the offices are their buddies. My girls may be scared of the blood pressure cuff, but they are not scared of the nurse holding it. My job is to make sure that they know they are surrounded by friends at all these appointments. I like to think that I am surrounded by friends too. Since I have no time to just hang out with friends, I have made many of the people who work with my daughters my friends over the years.
Just because my husband misses most of their appointments does not at all mean that he is hands-off. My luxury in our family is that I do not have to deal with insurance and bills. I have never called our insurance, ever. I’m quite proud of that. It’s freeing to show up at all these appointments and never worry about how they are going to be dealt with through insurance. I’ve had times where an employee at the front desk has asked me an insurance question, and I just smile and declare that I haven’t a clue. I have to reserve so much of my brain power for all their medical info that I rather enjoy saving no space for insurance mumbo jumbo. I believe my husband likes having an important role in our medical journeys as well. I completely trust him to do all this, and he does a spectacular job. I pride myself on being an intelligent woman, but there is a beauty in being blissfully ignorant when it comes to all the back and forth between insurance. For the sake of honesty, I’ll admit that I’ve written a few letters of appeal, but it’s more fun to believe that I am free of all insurance worry.
Describe a caregiver technique you and your partner do differently.
One major way that my husband differs from me is that he is a homebody, and I don’t sit still well. I like to take the girls to the gym or park, if we are bored at home. He, on the other hand, never gets bored at home. I think both qualities are good to have in a family. While I can get anxious that Elliot is not getting enough exercise, I can see that bumming around the house is something that she needs sometimes. She works a lot in therapy and school, and he helps remind me that it is not going to hurt her to do nothing for a little while.
There is one area in Elliot’s life that I have never trusted my husband: her splints. Elliot got her first pair of wrist splints in the NICU. They are meant to hold her wrists in an ideal position when she slept. When she was smaller, the splints were actually putting a little pressure on her wrists, trying to help them move into a better spot. Now, they just maintain. She’s achieved a lot with splinting. If they are strapped on too tight, they can create pressure sores. If they are too loose, they will offer little benefit. For five years, I have tiptoed into Elliot’s room after she’s gone to sleep and quietly strapped each splint on. I acknowledge this is my own form of craziness, and, therefore, do not resent my husband for knowing nothing about her splints.
One big thing that I don’t think a lot of people realize about my life as my daughters’ caretaker is that it involves a lot of medical decision-making. You see, there is not one pattern to follow for any of this. There are tons of surgeries out there and tons of opinions on all of them. Every single choice I have made on my daughter’s behalf I have heard someone talk negatively about it in an online support group. The boots with the bar that helped my daughter’s club feet, those are awful, don’t work at all, should never be used on a child with my daughter’s condition. I thank goodness all the time that I have excellent research skills as a librarian and know better than to believe everything I read online. Out of the plethora of treatments, we have to pick some (or none, as some choose to do), and we have to do our best to be happy with our decisions. Luckily, my husband and I make a great team when it comes to these decisions. We’ve talked about these procedures endlessly, and we meet in the same place when it comes to our daughters’ care.
Elliot started kindergarten this fall, and I can happily say that I handed off some of my caretaker duties to her teacher and aides at school. She is part of an amazing special ed program in our city, and her transition to longer school days could not have happened at a better time. Five years of early interventions is a lot. Five years of working my butt off. Adding Fiona to the mix almost two years ago sped our household up even more. I was honestly exhausted. Right now, I am grateful that I can lay off Elliot a bit and let her just relax when she comes home from school. I still have a hard time leaving her be, but I’m getting better at it. I stretched her 6 times a day for years. I bribed her with Goldfish to take tiny steps through the aisles of Target for years. Now, I let her sit and play iPad. Nothing else. It’s nice. She’s learning to communicate with us through that iPad now too, so don’t knock the iPad time.
I’m going to be my daughters’ caretaker for life. Fiona will leave our nest one day, but Elliot likely never will. My vision of my future has changed over the years, but it’s not a bad thing. Elliot loves the ocean. She might be my key to getting that little retirement house at the beach that I always dreamed of. My job as her caretaker now is to make sure that she grows up to be someone I will love spending every day with. Elliot, Rob, and I will rock in our rocking chairs, watching the ocean, waiting for Fiona to visit and tell us of all her adventures. That doesn’t sound bad at all.
The Ashe Family