My name is Kara. I got married 7 1/2 years ago in August 2007 to a wonderful, supportive, helpful man named Tim who I had started dating in grade 9. I became a stay at home mom in November 2012 when my daughter Kailyn was born. She surprised us all by coming 3 months early at 28 weeks, weighing 1.4 lbs. Her strength was truly a miracle and we spent 10 weeks in the hospital without any major issues.
I was diagnosed with scleroderma in 2000 when I was in grade 7. It's an auto immune disease that affects the skin tissue and internal organs. It's involvement for me up to this point has been mostly tightening of the skin in my hands and face, Raynaud's (which is poor circulation), which has caused ulcers and bone loss on the fingertips, slightly lower lung capacity, and tightening of the esophagus.
In a normal week I'm involved at our church two mornings (bible study and moms group), one date day and the other two weekdays spent at home or doing other errands/appointments. We always will be home after lunch for nap time!
My disability definitely affects me every day in many ways, but often is ways that I have adapted and don't notice as much. The biggest difficult is my ulcers, especially if they are bad or become infected. Last winter one had gotten infected twice (had to go on antibiotics). At this time it was so painful and difficult to do things, that when my daughter pooped I would call my mom and she would come change her diaper because I was unable to. This is the extreme and has only happened that one time so far. My biggest daily challenge would be energy. I do fear the day that she won't take naps as I have napped almost daily since high school. Also, the baby stage and doing all the difficult buckles and clothing snaps were very hard. It's gotten easier as she has gotten older. I'd say that my biggest advantage of having this disease is that I've needed help with things for a long time so I lost my pride and need to be "super woman" and do everything myself a while ago. I am very comfortable asking the people around me for help.
I wouldn't say that I doubted my ability to parent, but I knew it would have it's challenges. For me it was more of a question of getting pregnant, and the effects on my body for carrying the baby and delivery.
The disease has shaped our relationship, since my husband has been on this journey with me since basically the beginning. He went into our marriage knowing that it's what I had and like most (if not all) auto immune diseases it's progressive and you don't know how it will continue to affect you. We have found the balance of what I can do and what is his responsibility. It works :)
I'm not sure how my disease has affected my daughter so far because she just turned two. But I hope it will teach her that life can hand you many different unwanted circumstances, but you can choose to be positive and look for the many good things.
We are Christians and our hope is in our eternal life where there will be no illness and pain. This is what we look to for comfort. This disease is a reminder that this earth isn't our final home.
Click here to read my reasons for doing this series.