I have realized that I have been living in autopilot since Kara's diagnosis. We are approaching 2 years of our journey with her Systemic Scleroderma. God has been so sweet to allow me to get used to this new journey little by little. To catch you up since my last post...
In May 2010, Kara's achilles tendon decided to tighten up. She was on crutches for a week. We had hoped and prayed it was a sprain, but when the pain suddenly went away one evening, we realized it was her Scleroderma reminding us it was still around. PRAISE THE LORD that the tendon did release! Exactly one week later it tried to do it again, but didn't stick around.
We had a great summer riding roller coasters, visiting the beach, enjoying bbqs with friends...a typical summer. Aside from an occasional tummy ache remedied by resetting her digestive tract, health wise the summer was quite uneventful.
In September we participated in the Stepping Out for a Cure Scleroderma Walk in Sacramento. I was surprised that it was so difficult for me to be a part of it. I had to face the reality that this is now our life. Most days I was able to not think about it, but being a part of the walk showed me that even when Kara is having great stretches of time, there are still other families out there who are not. So, as a familiy, we are now praying God will show us exactly what we are to do with this journey outside of just caring for our family's immediate needs. This means, autopilot is now turned off and I am learning to be present every day. I am letting myself feel, everyday. I am trusting God, every day.
Kara has now started 8th grade. She is doing well, even though we are realizing her Scleroderma is active after all. Her Pediatric GI doctor confirmed that it is, which has confirmed that we need to pursue a Rheumatologist who is top-notch in Scleroderma research and treatment.
So, here is added blessing to one from last summer...Kara's original Pediatric Rheumy switched over to General Pediatrics and became her Primary Care doctor. At that time, the blessing was combining 2 doctors into one. The added blessing is that we can now add a Pediatric Rheumatologist at Stanford to Kara's Dream Team! GOD IS SOOOO GOOD! Please join us in prayer that we will be able to get the referral and get her in to see this particular doctor who is brilliant and highly recommended!
We have also been blessed by two young people that we know who each wrote research papers on Scleroderma for school. It is such a reassurance that people care, people are praying and people will join us in our efforts to get the word out about Scleroderma and desire to understand what our daughter and our family is facing.
Most everything else is still the same. Kara is playing on the school volleyball team again. She is staying active and I think most days she doesn't think about her health issues. She doesn't complain, she just lives and loves life!
"Yes, we should make the most of what God gives, both the bounty and the capacity to enjoy it, accepting what's given and delighting in the work. It's God's gift! God deals out joy in the present, the now." Ecclesiastes 5:19 The Message
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