helping them find their way
Living with a genetic disorder is hard. I don’t care what the condition is or how life-altering it is, it is hard to face the reality that one’s genes are messed up.
It is even more difficult to realize and then go on living with the reality staring me in the face that I have passed this on to my children.
On Sunday we had a family council and explained hypermobility and what it looks like and what it means. Our children have always known they were more flexible than their peers and that I was super flexible and, of course, they have lived through the past three years of my nearly constant injuries, but amazingly enough, they didn’t really know they were at risk for these same type of injuries. We tried to present the information in a “Let’s all work together and get super strong and take care of our bodies” sort of way, but that message only goes so far with children who have their brains turned on to evaluate the message and can see right through the rah-rahs to the grim prognosis. Responses varied to our rousing cry of “We are going to start an exercise plan to build super strong muscles! When people are flexible like we are, they need more muscles to hold them together. Does anyone have any suggestions to build our muscles?”
Fisher: Are you saying my hips are going to break like moms? (For the record, my hips are NOT broken – the labrum on the right side is torn.)
Blythe: But we aren’t as bad as you are, right? Right? We won’t end up like you, right?
Keziah: I AM NOT EXERCISING WITH THE FAMILY!
Annesley: When can we start? Do I get to do DDP Yoga with Papa? I am so strong and now I will be EVEN stronger!
Fisher: Am I going to start passing out like mom?
Fisher: Why did this happen?
Blythe: Just because we are so flexible, that doesn’t mean we have to end up like you, right? You were more flexible than us, weren’t you?
Keziah: I am FINE.
Annesley: I will get super strong. Look at my backbend, look, look, I can almost touch my feet with my hands. LOOK!
Fisher: Are you saying my ligaments are like mom’s?
We tried to be reassuring. We tried to calm fears and give hope and help them understand, but they couldn’t. All they could see was the string of injuries their mother has become and see themselves on the same path. Some of them tried to reject the whole thing, insisting they are “fine,” some of them got scared, some of them tried to solve it logically, some of them just aren’t willing to look it square in the face yet.
I understand all of that, having felt all those same emotions myself. It will take some time for them to figure out how to deal with it. It is going to take lots of encouraging words from us as parents and lots of real, deep, heart-to-heart listening.
At the same time, we do not want it to be a focus of their lives – we want them to run and play and laugh and live without a constant worry hanging over their heads that they will end up like me.
And that is what I don’t know how to do. They see me everyday. They see me shaking, passing out, crying in pain, taking piles of supplements. They see me unable to lift my arms up to drive, unable to carry things, sitting in my special chair, and going to endless physical therapy appointments. They see it up close and personal. They have helped dress me, cleaned up my vomit, pushed me in wheelchairs, called out for someone to help me, taken my heartrate and so much more. We have tried to protect them and I often put on my very bravest face when they are around, but our talk on Sunday took off the last of their blinders and they started to really internalize that this is not just about me. It is about them and their children and their children’s children. It is real. It is not something we can just wish away or grow out of.
How do I help them balance out the plain facts in front of them with a huge dose of hope and optimism and free spiritedness? How do I help them build muscles without it being done in a spirit of fear of what could happen if they don’t? How do I lead them in developing habits that will lead to a lifetime of strengthening activities when I cannot participate myself? How do I look in their eyes and see their fear without it breaking my heart?
It is time for courage.
Against all odds, God gave me these precious children and He expects me to teach them how to deal with the life they have been given, not the one they wish they had. None of us wishes to have something wrong with our bodies, but the reality is something IS wrong and it is time to learn how to thrive.
On top of the exercising they are doing, I think they need a host of stories planted deep in their souls of people doing hard things. I want them to know they are part of a plucky family so we are going to be sharing more family history stories. They need to hear and hold in their hearts more stories of bravery, sacrifice, service, compassion, duty, and love. I plan to fill them up with stories of American patriots, fellow Christians serving God with full-purpose of heart, and stalwart men and women from all over the globe. They need to know that even though their collagen may be made of weak materials, they are made of tough stuff that can and will do hard things.
I have learned that while the physical challenges of this disorder are great, the emotional, spiritual, and mental battles are far more critical to my well-being. If I can stay in a place of mental toughness, open-heartedness, gratitude, commitment, and peace, I can function well, regardless of what state my body is in at the moment. When I give in to hopelessness, fear, anger, self-pity, or try to close myself off from the world, that is when I am really in trouble.
So, building their muscles is essential. Absolutely. But far more important is building their spirits to know who they are, what they are made of, and the nature of their God.
Be strong and of a good courage; be not afraid, neither be thou dismayed: for The Lord thy God is with thee whithersoever thou goest. – Joshua 1:9
Fear not: for they that be with us are more than they that be with them. – 2 Kings 6:16
Therefore now let your hands be strengthened, and be ye valiant. – 2 Samuel 2:7
For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. – 2 Timothy 1:7
And they were all young men and they were exceedingly valiant for courage and also for strength and activity; but behold, this was not all – they were men who were true at all times in whatsover thing they were entrusted. Yea, they were men of truth and sobernes, for they had been taught to keep the commandments of God and to walk uprightly before Him. – Alma 53:20
They need to know that when hard days (and weeks and months and years) come, for we all have them in various ways, they can and must turn to the Lord and He will strengthen them. He will infuse them with power to keep trying and courage to choose to do so. He will pour down healing that cannot be explained by medicine and He will wrap them in His arms of love during the pain. He will love them with a love that is pure and precious and sanctifying.
And as this knowledge grows within them, they will be able to face EDS and all the other challenges that this life will give them.
I guess that is my answer…rely on The Lord, courageously fight my battles, share stories with my children of brave men and women and children doing hard things, and trust that they will turn to Him.
Small marching orders, eh?
I'm Tracy, a mama with big dreams, crazy ideas, loads of laughter, an insatiable desire to learn, and enormous piles of laundry.
Wow. I don’t have any words at all, but I want you to know that what you’re going through has touched my heart, and I’m praying for you and your family. Thank you for your openness and vulnerability through this process-it’s so very inspiring.
Thank you Becca, I often think I have shared too much or bored people to death with this journey and that I need to figure out a way to write about something fun and happy and inspiring, but I just have to write from my heart and be real from the place I’m at today. It’s nice to know my experiences are blessing you.
I was just pondering life a few days ago and realized I really need the energy and uplift of the conference this year. When is it?
June 24th. The theme, perfectly, is healing. All aspects of it. It would be AMAZING if you could pull it off!! I’ll totally comp you a ticket, too!
I would love to come and that weekend is free of other commitments. I will have to get someone to bring me down as it is not safe for me to travel alone anymore, so if I can convince someone else to go, I’ll be there!
Thanks so much!
I can identify with a very tiny part of this.
My mom (age 56) has broken several bones over the past few years. At some point they humored her and did a bone density test, and found she has very low bone density, which at this point is osteopenia, but is almost guaranteed (not counting miraculous healing) to progress into full osteoporosis at a comparatively very early age.
My sister and I are 33 and 34. My mom told us that it is critical for us to strengthen our bones now, even though osteoporosis is not typically genetic, and there is no way for us to know if we are prone to it. If we did a bone density scan now, it would tell us nothing.
So even with this being a much easier medical issue to deal with than yours, and even though there is zero evidence that my sister or I are already at risk, and even though I’m a (supposedly) mature adult, and not a child, I am pretty much in denial. Part of me is thinking “oh well, you’re supposed to build bone in your early 20s up through mid 30s, so it’s already too late anyway.” Part of me is just like Keziah, thinking “I’m sure I’m fine. There’s no chance it is affecting me.” When I’m thinking about whether I should go to the gym or not, I guarantee you I am NOT thinking about shoring up my bones against osteoporosis.
My sister has always been athletic (she’s in the Air Force), and I have always been completely NOT athletic. Fortunately, in 2012 I gave in to peer pressure and started CrossFit, which threw me head-first into the world of strength training, and now I at least have a base to build from.
Even if the denial is strong now, your kids will really benefit from getting this start and having this information. I love that you are doing it as a family, and even though you can’t participate with them, they will still have their family to work with as a team. Having the team/group workout aspect to CrossFit was amazing for me. Keep working on those in denial. I’m sure you can find a way to help them out of love, and help lessen their fear.
Katie, thank you for sharing your experience. It helps me feel not so alone on this journey…I totally KNOW I am not alone since there are millions of people and families with health challenges, but hearing other’s stories helps me in a way I cannot articulate.
The denial aspect of this huge. There are STILL moments (and probably days) where I am certain I am FINE and I must be making this all up and causing these injuries and it is not really as bad as it sometimes feels.
My Keziah…a runner…has been having knee problems for months when she runs. She went in to my PT this week for the first time and the first thing he asked her was “Are you your mother’s daughter?” She said “well, yeah,” to which he responded with “What I mean is do you have your mother’s loosey-goosey joints?” And she said “I don’t know.” He started moving her knee around and said “Oh my, yes, you do have her same loosey-goosey knees and your meniscus is NOT happy.” He gave her some specific exercises to do and evaluated her running form and gave her a list of assignments. And now it is up to her. She is 14 – I can’t make her do any of it. I can’t make her believe it. But I am trying my darndest to encourage her to follow through with what he taught her and hope she has the courage and determination to own it.
Wow. Just wow. The thoughts and feelings expressed in this post and Katie’s comment have struck me hard today. I think I’m finally moving forward as I grieve my own daughter’s genetic condition. Six months ago my beautiful 16-year old Emma was diagnosed with a genetic eye condition, Retinitis Pigmentosa, that will leave her blind– somewhere between 10-30 years from now.
But it was as I pondered your words that I realized that Emma has finally moved from denial into acceptance. She now desires to understand her future limitations so she can carve out a life that thrives while dealing with the challenges the conditions brings. But, the hardest part of moving into this new understanding was coming to the realization that she is not her condition — it just means that she has to do things differently. Six months ago, the diagnosis shattered her life and her future expectations, and it showed in her confidence, her school work, and even in her sports performance (she’s a swimmer).
In the last six months she’s slowly found ways to embrace her new challenges. I’m so proud of her because she’s already learning braille (and we are so blessed to have found an incredible teacher!) and she’s anxious to do all she can to learn and fully embrace this new lifestyle, long before she actually needs it.
Your beautiful words and thoughts helped me realize today how much healing can happen over time. Keziah is an incredibly strong and amazing girl, and I know she will eventually move from denial to acceptance and then she will embrace her challenges with the courage and strength she needs to own it! I really believe that allowing her the time and space to grieve the loss she feels will enable her to embrace the condition sooner, rather than later. And, when she’s ready, she has a built-in support group who really gets it. What a blessing that is too :)
I love you and am so grateful for the wisdom and love you so willingly share. You are truly one of the most Christ-like people I know. Thanks for being such a beautiful friend!!
Valena, here is a big hug {{{{{{{Valena}}}}}}} and another one for {{{{{{{{Emma}}}}}}}}. You guys are facing a huge life change and from what I can see, facing it with courage and faith. Big kudos to Emma for starting to learn Braille and to begin the process of acceptance. Those are HUGE steps, HUGE! I cannot imagine what it must feel like to contemplate losing one’s eyesight. We need to get together for lunch or a treat or something!
We are doing something similar in our family. I have Hashimotos autoimmune disease and Michael’s side of the family has a lot of diabetes. So there is autoimmune disease and endocrine problems on both sides for our kids. We started just wanting to manage my issues because Michael doesn’t have diabetes, but with research and blood sugar testing and other things, we have realized we needed to take preventative actions with Michael and the children. We do this mainly through diet. It has been difficult for the children to give up foods they love and reject all the sweets and treats that are constantly shoved in their faces at church. I’ve been really proud of the way they have chosen to do this, though. And now things are a lot easier. I think they feel good about taking care of their bodies and they feel empowered that they can do a lot to keep healthy. They aren’t just victims to their genetics. They can be agents over their health and managers of what life has given them. Really, this is what everyone needs to do. Anyone will end up in a bad place if they don’t act with purpose in their own health. It will look different for different people, but none of us can live however we want and not pay consequences. I try to spend time thinking about how grateful and fortunate we must have felt in the pre-existence to have the opportunity to get a body. We knew that in a million different ways, it wouldn’t be a perfect body. But, boy are we blessed to have them. And someday they will be perfect which is the most exciting thing ever, but for now we have to love and care for the imperfect ones. I forget this constantly, and I hear other people forgetting it constantly too. I guess that is what the jealousy of Satan does. He reminds us all the time of how imperfect our bodies are. I am thankful that there was something to push me into learning to care for my body in the same compassionate, loving way that I would care for a special needs child or an elderly parent. That’s a pretty priceless lesson. It’s great that your children and my children can start doing something now, before they have problems. I’m sure that will be so beneficial to them. For now it is such a hard thing to face, but I think it will get better for them.
Oh Kerry, those are beautiful, empowering thoughts! Thank you for shining your light in my life and helping me to see with new perspectacles. Hastening the healing, nurturing my body, strengthening inside and out is what I must focus on.
How are things in your new area?
We actually have a new, new area. We didn’t have much love for central Washington. Michael had an opportunity to transfer to Oklahoma, so we took it. We’re in Oklahoma City, and we super love this place. The diversity mixed with tolerance and love, the strong religiosity, the extreme friendliness, the freedom loving and defending, the beautiful trees and rolling hills, and the multitude of resources and opportunities for our family makes me super happy here.
Wowsers! What an adventure! So glad you’ve found a place to bloom!