Dear Katie

Received this message on my Facebook Timeline this morning.

This is my long response...

Katie:

I am at a lose for words….but maybe as I write I can force my mind to form into words the emotions your thoughtful post has evoked!

First of all, I think the me you saw all those years ago was not nearly as stressed out as I eventually got. I am so thankful for our friendship, your love and your prayers! It was one of the best decisions in my life to fly you into Winnipeg to help after Rose was born. I remember wishing you could just live with us forever. You were so helpful and the kids loved you so much.

My experience sounds a little similar to the shows plot line. At the time we found out Rebekah had OI I too had faith that God would only give me what I could handle. And to His glory by the time she was born the broken femur that was bent in her first ultrasound was straight with no outward sign there had been a fracture before birth. The x-rays confirmed the healed fracture. Genetic counselling was given so we understood the odds were 50% for each child to be born with Brittle Bones. But other than the first appointment to diagnosis both Rebekah(3mos) and Larry(30yrs) we never sought out anything further during each pregnancy because abortion was NEVER an option for us. My mother on the other hand was the only one who suggested that I shouldn’t have anymore babies because of the disorder, though she never suggested abortion either….it was a painful conversation that still upsets me to this day (Bekah is now 21).

Every life has value and a purpose. Every encounter we each have with others in this life is an opportunity to shape the other. It is our choice if we will allow that interaction to make us better or worse for it.

I don’t think, looking back now, that I was overwhelmed because I had four children with Brittle Bone Disorder or because my husband had multiple heart surgeries. I was overwhelmed because of the lack of good relationships in my life that would allow me to speak, be heard, feel valued, and important and like a contributing part of society. Having other mothers, grandmothers and women in general not want to ask me how I was, back away from me even was very lonely.  Not being offered help, not being available to be a shoulder to cry on, not speaking encouragement or life into me and who I was as a wife, mother or woman is where the hurt came in. 

So if I was to speak of anything that is hard, or overwhelming in life in general it is not the physical demands of being a parent to children who have special care requirements. Those things can be tiring, challenging, and frustrating….sometimes even exhausting. But it is the lack  of emotional support that hurts, harms and ultimately defeats a parent, any parent, any person. Feeling alone in the world, especially when you have to deal with difficult situations is the true illness of society. Being a christian I probably held other christians to a higher standard. One which they all failed, regardless of where I lived. With a few brief exceptions. In Winnipeg my best friend was Sikh and not a christian at all. The two years I lived beside her were the best years in Winnipeg, because I finally had a friend with whom I could talk about anything. She was not afraid to hear about the things I found challenging and had to deal with for the health of my family. And I was able to do the same for her. I dearly loved her and wish I could find her as we lost contact with all our moves.

Another example of the lack of support happened early in my life. At 16 I worked for a year with a little boy who was legally deaf, blind and had Cerebral Palsy. He was sweet and his mother very kind. By the time I was in my 20’s the news broke one day of their murder suicide. She was overwhelmed by the lack of help, especially as he was aging out of the system as he approached 18. It was a very sad story and was difficult for me having actually known them years ago. 

The lack of emotional help offered to me as a parent through the Shriners Hospitals has also concerned me over the years. No one knew I was depressed for all those years, nor would I admit it to myself, because ya know, as a christian I was support to be happy. And obviously my faith was not strong enough or else my family would have been healed! But not once was I ever asked how I was coping with four children, and a husband who had health issues. Not once was I asked if I wanted to talk about it. Nor was it suggested that I see a counsellor but my family physician or the Social Workers at any of the hospitals we would grace the floors of during some crisis or other. 

So, my big question is, who is taking care of the carers? Who is seeking to befriend them? Who is loving them and supporting them. Treating them like normal humans with a need and desire for relationships other than doctor/patient/caregiver connections? Who is checking on them and how they are doing? I had no one, literally for years on end. My life was too overwhelming for others to consider being friends with me. But friendships, or mentorships would have made a huge difference in my life. The church fell very short of loving one another in my case….how many other women are sitting in pews and chairs feeling unnoticed, unimportant, overwhelmed, and unloved? 

This is why I have no use for putting myself in those seats ever again. But also why I want to be a mentor and to love on the young women who will let me love them in my life.

Jenn