Learning To Slow Down

We often have unanswered questions about Helena’s condition because AMC is so rare. There are some occasions when we hear something new.

In December of 2019, we received some new genetic information about Helena’s condition. At that time, we found out that Helena has a genetic mutation that could have contributed to her AMC, as well as predisposing her to possible heart problems later on.

Because the information was so new, we were very careful throughout the pandemic, and have been extremely fortunate to have supportive family members, physicians, teachers, and employers who have worked with us to ensure that we do what is best for Helena. So far, we have been thankful that Helena has had no difficulties other than her muscle contractures. Helena participated in online Kindergarten during the pandemic and returned to a traditional classroom setting this year for First Grade.

While Helena participated in remote learning, we did not perceive a lot of issues with muscle weakness other than what is obvious. She did her work and would go out for regular playtimes. At home, we generally spend most of our after school time playing outside. Helena will do pretty much anything she sets her mind to – just like most kids. We generally do not limit her activity level in any way.

Once Helena returned to the traditional classroom setting, we started seeing some behaviors we hadn’t seen since Pre-K. Helena held it together throughout the school day but would frequently throw huge tantrums in my classroom after school.

When these things happened in Pre-K and after daycare, we just thought these were fairly normal for her age. And to a degree that was partly the case; but not entirely.

We went to see Helena’s neurologist this past December for her annual appointment and we mentioned her fits to the doctor. As she checked her, she picked up her braces and became concerned. She said they were too heavy – that these were wearing her out and were very likely one of the reasons for her fits. She insisted that the braces must be made lighter.

The neurologist spoke with Helena’s orthopedic surgeon and orthotics staff were called in. While they were sympathetic- they said that the braces could not be made lighter. Orthotics recommended that she increase her use of assistive devices – crutches or a walker and her wheelchair.

We have spent the better part of Helena’s childhood pushing Helena to stretch, to challenge herself, and to do things herself. Slowing down was something we rarely discussed or thought about. It is also contrary to what you hear about physical activity in most cases. We were being told that Helena now needs to “learn her limitations” and slow down before she does damage to her body. This was the first time we had been told this by a doctor.

One lesson for living with AMC that has always been with us is to not limit yourself based on appearance or what you have never tried. A new and seemingly contradictory lesson we must now teach is to allow yourself to be vulnerable and accept when you need to slow down. That is a hard lesson to learn for anyone – but definitely for Helena. In the words of one of her teachers, “You can’t teach a kid to have her kind of drive. They just have it.”

We have spent a lot of time recently reevaluating how Helena spends her energy and what she eats. She has had a wheelchair available for long distances and uses it when needed so that she can save her energy for when she gets to where she’s going. She does not like using assistive devices very much, because she feels it further separates her from being like her peers.

We are working on finding the right balance of slowing down and pushing through to pace herself so she doesn’t wear out at the end of the day. Sometimes, we have to make her slow down. At other times, we still push because it is in her best interest to keep going. Because Helena is so young, she sometimes wants to go when she should rest and rest when she doesn’t want to do something. We are having to consider these decisions more carefully in order to help her learn to evaluate her own energy levels.

Helena will be having a new appointment her neurologist this Friday. We expect that her braces will be further discussed then, and we are pretty sure she will be getting a new pair of braces soon because she is outgrowing her current ones. Hopefully they will have some new ideas on how to lighten them. We also realize that we have begun to move toward a new phase in her medical care. We are at a point where we need to teach her about striking a balance between independence and acceptance of when she needs to slow down. Please continue praying for Helena as we help her find the right balance.