Without a Paddle
Ponderings of an Uncommon Life
Facing Truth
I try to model positivity and a “can-do” attitude regarding Helena’s condition. However- there are times when reality seems to be more painful and moments when the emotions that I can typically keep under control seem to unravel.
Today was one of those days.
I went out to watch Helena run with her classmates at a school fun run today. She had a fundraiser like this a couple of years ago, just before the pandemic hit. It was a lot of fun to watch.
It was chilly outside, and yet Helena was overjoyed to be out there running, playing, being with her friends, anld experiencing the foam party. She was so determined to be at that foam party I spotted her a second donation to achieve it for her. She was giggling, socializing, and having a wonderful time. She was making the most of her experience.
As I watched her, however, I became increasingly sad and angry at her disability. I felt a sense of loss for Helena. I felt powerless.
She ran toward her first obstacle, an inflatable mountain that she was supposed to climb over. She started, and couldn’t get over it. Other kids came , climbed over, and she was still there trying to get up. It seemed impossible for her – and yet Helena, as usual, was determined to do the obstacle. After two or three rounds of kids overcame her, I encouraged her to skip the obstacle until fewer kids were there – but she wouldn’t be able to get over it without help. It took two adults to accomplish her getting over.
It was very discouraging to me.
It was a normal day for her.
She was having the time of her life. Unbeknownst to her- I was grieving the increasing disparity between her abilities and those of her classmates.
Helena couldn’t do several of the activities on the course. She couldn’t climb the inflatable mountain. She couldn’t jump the hurdles. She fell a lot. She was passed up constantly. She was left behind. This was more apparent this year than at the last fun run. Yet she was just so happy to be out there. She was giving it her all.
Helena had no idea I how sad this made me feel. I am the one who should set the tone for her. Sorrow for her circumstances is not an acceptable display for a parent raising a disabled child. Yes- it is okay to feel sad, and it is okay to be upset – but it is exceedingly unhelpful to her mindset to see me showing these feelings. Without her knowing – I was falling apart on the inside and it was visibly spilling forth in front of others.
I kept thinking – I won’t always be there to help her. I can barely help her now.
Helena has always been accustomed to finding workarounds to physical challenges. She knew she would eventually be able to get over the inflatable mountain- and without the large number of kids going at the same time- she knew she might even be able to make it without help. Helena exhibited the positivity we have encouraged her to have and will continue to cultivate.
I am always aware of her challenges and the difficulty she has with physical tasks – but do not always see these challenges in the obvious way this event displayed them. She does what she can while everyone around her passes her up. She does this with a smile on her face- just happy to be out there. I am grateful for her joyful attitude.
However, I do frequently grieve the struggles she has with simple childhood experiences. As I watched her, I felt the questions once again overflowing from my pent up emotions.
God- why? Why does Helena have to work twice as hard as everyone else? Why does she have to suffer while trying so hard to catch up, when there are others who won’t even take the steps to begin a challenge? Why does she have to deal with mean kids?
Why does she have to deal with the stares and whispers, the pitying. Why does she have to deal with insensitive comments? Why is this something that has a purpose in your plan? It doesn’t seem like it is useful to me at all. Why does she have to carry the burden of a disability? Why does any kid have to bear this burden of disability? Isn’t life hard enough?
How do I keep the joyful spirit I saw out there today joyful, and not turn bitter? How do I smile and not be upset when I have told her to smile and keep on moving? How do I set the tone of positivity if I don’t feel positive? Please- can You strengthen me in this?
There are many passages about tribulation and suffering in the Bible, and here is one:
“And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope;”
Romans 5:3-4 NASB1995
I have this passage highlighted in my Bible, and I love it. But somehow, the tribulation Helena has seems to be a little over the top. Why does a child have to be born with any form of disability or illness? It’s unfair and I’m angry!
As she grows and her peers pass her up- my anger grows with her.
I think it is really uncomfortable for other people to see her falling behind as well, and then when they look at me and see the flood of emotions it makes them even more uncomfortable. I try to stay positive, but sometimes the reality is that this is our situation and it is difficult.
I don’t like other people seeing this side of me and it is difficult to find people who can relate to this situation. It is a lonely place to be – I can’t adequately verbalize the pain.
I suppose the best imagery is the fun run itself. Helena has always been behind her peers physically. Her peers will likely meet setbacks or injuries along the way – and she may somehow gain a bit of ground in the race. But ultimately, they will heal, grow stronger, and move further past her physically. She will fall farther behind.
I am sure there are times when people wonder- why bother with physical activities? She shouldn’t have to keep pace. And this is true- but I will never tell her she is not allowed to run the race. She truly wants to run the race and has as much or a right to run as anyone else. I watch this happening – and it is hard.
During these times when the disparities are hard to look past, a shadow looms over me and I can’t seem to shake it off.
That is when for me, it helps to retreat and pray. As much as I know it can help to have others to pray with – solitude many times feels the most comfortable. Helena stayed with grandparents this evening, so I was able to just sit, pray, and dwell on my sorrow. I have found that I can’t bury sorrow – it is better to just experience what I’m feeling and pray my way through it.
I try to be positive, and mostly- try to live joyfully. Helena is such a blessing to our family.
But sometimes- I’m just not feeling it. And that is okay.
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.
AMC Awareness Month
June is AMC awareness month. On June 30, people all over the world who have been affected by AMC will wear blue to increase awareness of this rare condition. If you know Helena, I encourage you to wear blue for AMC!
Helena’s condition, Arthrogryposis Multiplex Congenita is a rare condition that causes three or more joint contractures in two parts of the body. We first discovered that there was something going on with her joints during my pregnancy at our routine mid-pregnancy ultrasound. Many babies are not detected before they are born – and many mothers are asked to terminate their pregnancies when this information is discovered. We are thankful to have had doctors who were not of this mindset! Learn more about this experience in this post: Perfection Redefined
Typically, it is said that AMC affects every 1 in 3,000 births. With some variants of the condition, it may even be closer to 1 in 10,000. AMC is not considered to be a disease or syndrome, but rather a condition caused by another health problem or environmental factor.
There are many reasons AMC might occur. There may not be enough room in the mothers womb, and limited movement may be the cause. There is research to suggest that certain nerve activities that occur in fetal development may have been delayed, causing contractures. The condition can be caused by a maternal illness or genetic factors. For this reason, AMC is different in every child who has it. No two kids are the same.
We found out in December of 2019 that Helena’s AMC was likely the result of a genetic condition. We are still learning what this means for Helena’s plan of care.
The Season of No
As a public school music teacher and the mother of kids who are learning remotely (while I work in-person), this school year (and all of 2020) has been one of blessings and of challenges.
I believe in being a part of community. I will be the first to say that I believe that it is a healthy practice for my kids to be in a school classroom with other kids. I believe in keeping kids active in school culture and the community in which they live. And as community members, I want my kids to flourish and grow.
But this school year for us has been a season of no.
No to in-person learning.
No to extracurricular activities.
No to eating out since March 2020.
No to casual shopping in a store.
No to large gatherings of any kind – including church.
No to family gatherings where more than 9 people or two households will be meeting.
No to Christmas dinner with extended family.
No to seeing smiles unless they are close contacts.
No to traveling anywhere but home.
One day, I was speaking with a friend who was frustrated by the lack of consistency in Covid rules. I agree that in many ways there are inconsistencies – but I explained to them that at our house we work to be very consistent.
We do ALL of the things:
We do not go out unless we have to. When we do, we immediately shower when we get home. We quarantine our clothes. We quarantine any goods we receive. We mask up around anyone we don’t have in our “living circle.” We, quite honestly, aren’t socializing outside of our family circle.
My classroom Covid-19 procedures are, for the most part consistent with what I do at home, as well. We try to consistently wash hands or sanitize at the beginning and end of every class. We sit nearly 6 feet apart. My passing periods are spent spraying chairs and washing my hands to do it all over. If we use instruments, they are all sanitized or quarantined for 2-4 days before reuse. As a school district, we all wear masks and have done well working together to maintain a safe environment.
Our motivation for having Helena and Rebecca in remote learning is neither a political statement or done out of fear. Our motivation is to ensure Helena stays well.
Helena is doing very well! However- her condition is incredibly rare, only occurring in 1 in 3,000 births. When a specific genetic condition is pinpointed, AMC tends to be even more rare. In addition, Helena’s doctors tell us that even among kids with similar genetic mutations, Helena’s condition is quite a bit different. We don’t know much about Helena’s genetic factors – we just learned of them in December of 2019. What we do know: Helena has AMC caused by a genetic factor that also causes other medical issues.
What does this mean?
Doctors really don’t know much about her condition. They have very few examples of kids like her who have been sick with COVID-19, and most, like Helena, do seem to be kept at home. This makes doctor recommendations a little more unreliable in that they don’t have the scores of data available on kids with genetic conditions. They have to make an educated guess.
I do believe the medical community is doing the best they can to rise up to an enormous challenge, and I love Helena’s doctors. But as far as recommendations on what is best right now, it is really hard to place complete trust in a physician. There simply isn’t enough data.
For that reason, we feel it is best to go with what we feel God is telling us to do. For us, this means that for now, we need to continue in the “Season of No” until the right next step appears.
When will that be? I wish I knew.
There are many times when I find myself lamenting and sad over this time. I hate how limited we are at times. I (more than) sometimes hate being “different” from the status quo.
And yet…
I know as a Christian that a “Season of No” can be an opportunity to grow in Christ. And this has been true for our family.
We have had to learn to be more reliant upon God, and as we have done so, we have been given the opportunity to take stock of what is important.
We have learned that God’s best for us is not always the same as what His best is for others. We knew this before – but now, we are truly living it.
We have learned that some things in our lives we felt were right but didn’t make sense were put into motion for a reason. (And we have marveled at this.)
We have learned that when we do what God feels is best for us, people sometimes get upset. To us, our response to the pandemic is not political. However – inclusive of all political persuasions on the pandemic, we have had people of all types of beliefs upset with us. If we are trusting God, however, we are still on the right path. We must continue to trust Him first.
I have personally been reminded that my greatest fear is disappointing (losing) people with my choices. The times when I feel the most stress is when I feel I have disappointed others; but to do the right thing, I must attempt to trust God and let this fear go.
In addition to these lessons, there are other blessings we have encountered:
Our family has been able to simplify and enjoy one another more. We eat dinner together every night. At a certain time each evening, chores and all housework comes to a close and we spend some time together.
We are able to sit and enjoy church together as a family online. A couple of weeks ago, we sat on our front porch as the snow fell and listened to our worship service. Helena discusses how much she loves the pastor, and calls the music minister by his first name.
Helena has never met the pastor or the music minister in our church- nor has she been in an adult service – she has always been in Sunday School while worship is going on. She is paying attention – and despite our circumstances, Helena will be ready to attend worship when we are able to return.
We have been able to save money and eat more healthily by not eating out or going places as much. This is something we hope to continue. While it seems convenient to eat out, the time it takes is often a trade-off for much needed rest at home.
We are reading a lot more. I have already completed 5 books for 2021. My goal for the year was originally 25 based on previous years. I think I may need to up it! Helena has read well over 100 books since December 15.
In the evenings instead of watching television, we spend our time listening to audiobooks. We are on our second and third ones of the year and will finish them both this week.
Our “Season of No” has been a time for reflecting and making adjustments to many things in our lives. From our finances and the possessions we hold on to, to our faith and beliefs, we are delving deeper and making more meaningful decisions. And slowly – we can breathe easier.
We know that when the time is right, our lives will get busier. Our high school freshman has sacrificed much this year in the way of social activities with friends and extracurricular activities. It makes me sad that she has not been able to have some of these things. And yet- we know that these things will come back into her life soon- and we hope that she is able to enjoy them more fully when they do.
As we push ahead in the year 2021, I hope to see that our “Season of No” will prepare us and develop us as we make way for a better time in life. But as we journey along – we strive to enjoy the blessings of being together.
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