People with Ehlers-Danlos Syndrome have a defect in their collagen producing gene. Collagen is like the glue that holds your body together and makes up things like tendons, ligaments, skin and blood vessels. So basically my "glue" is defective, very weak and does not hold me together well. EDS causes a whole slew of painful problems throughout the entire body but one of the most notable is frequent joint dislocations. These can happen in any joint and for me they happen every day. So when I walk my hips are partially dislocating, coming apart with each step so needless to say it is quite painful and frustrating.
With that said, when thinking about what I wanted to say for this event… I struggled with narrowing down a topic of conversation. I could literally talk for hours just about the pain symptoms alone. Or I wondered if I should I focus on the isolation of disability and being bound to a wheelchair. Or maybe the guilt of not being able to play with my kids or take care of them the way I once did.
But today I'd rather not dwell too much on the bad… I realized that if I was given 5 minutes to speak to a large audience about motherhood and disability, I didn't want sympathy tears... I would rather be able to encourage someone. So here are a couple of insights I have learned along the way as my health has declined.
The first is a message that probably hits home with overachievers, perfectionists and probably most moms to some degree…
Sometimes less is more.
The modern-day idea of the 'Supermom' is such a facade as some of us have found out the hard way. I used to push and over schedule my kids and never sit down because… What a waste of time! But a funny thing happened to me...most of my physical abilities were gone by the time I was 35 and yet the world still turns and goes on without me.
I remember being in the kitchen recently with my 11 year old. My heart was so heavy with guilt because it was beautiful outside and I couldn't take them to the park or even go for a short walk with them. I said to my son with sad eyes, "Eli I am so sorry that I can't take you guys out to do fun outdoor activities like we used to." And he kind of looked at me confused and said, "Why?" And I said, "... Well, you know I just can't get out and about like before..." And he just shrugged his shoulders and said "Oh, ok" got up from the table and skipped away unharmed. And for the first time I realized, it never occurred to him that he was missing out or that I had failed him miserably. Doing less was not a problem for him. Yes, I do wish we could get out more… but we've replaced adventures & outings with family movie nights curled up on the couch, listening to records, and playing board games from my bed when I'm not feeling well and that's OK too; maybe even a better to have a slower pace in life. Our family time is much sweeter as this "tragedy" unfolds and I'm learning it is quite possibly a blessing in disguise. I have had to slow way down, let go of the guilt and realize that I am exactly the kind of mom that I'm supposed to be, because there's just nothing I can change. And I would just like to encourage every other mother out there...especially young or insecure mothers.... You are exactly the kind of mother you are supposed to be, too.
The second insight is a challenge to reach out to someone in your life that is shut-in. Whether it is a family member with a chronic illness, an elderly neighbor, or a friend struggling with an invisible illness or mental disorder. I am SO fortunate to have a fantastic doctor and an amazing support system. I have a husband who's THE best Mr. Mom/slash caretaker EVER and my family is nothing but supportive. But that is the exception and not the norm for many other sick and disabled folks. I've had the opportunity to meet some amazing individuals through support groups with disabilities of all kinds. Sometimes the symptoms are different than mine, but the struggles are the same… Being chronically ill is a HUGE burden. We, especially, need others to help us get through this life, and although I have been hugely provided for… unfortunately many others are often forgotten about or left behind.
My husband often mentions the teaching of Jesus in Luke 14. Jesus states "When you go to luncheon or dinner, do not invite your friends, your brothers or relatives, or your rich neighbors; if you do, they may invite you back and so you will be repaid. But when you give a banquet, invite the poor, the crippled, the lame, the blind and you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous." I know from personal experience that even something as simple as sending a card, stopping by for a short visit or sending a quick email that says "how are you doing today?" means so much to someone who is chronically ill.
And the final insight is .... Feed your spirit. I'm convinced that our souls are the only things that will last forever and the legacy that we leave will depend on how we treated others. The book of Galatians says that the fruits of the spirit are love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. And with a glad heart the last time I read this, I realized that none of these qualities require physical strength, vigor or coordination while walking.
As a friend of mine pointed out to me recently as she was pushing my wheelchair… "We're all heading where you are Kristen... You just got there a little faster". For me especially, it's easy to see that our physical bodies just aren't meant to last forever, so be sure not to ignore your spirit. Nourish it, seek wisdom, pray for peace. Slow down, be kind, love others deeply and know that you are a great mother.
