Faith's Mom's Blog

When I had asked Faith a while back what she wanted to do for a graduation party, she told me, "a day at the park."  I knew it was a little risky planning an outdoor event in North Dakota (even in May). It wasn't all that long ago we still had snow on the ground. Also, it had snowed a tiny bit and the temperatures hovered around freezing just the weekend before.  I planned for the park anyway and prayed for perfect weather. I figured if it was cold or rainy we could move the event indoors somewhere. I am so glad we didn't have to do that, though, because the park was a great place to have Faith's graduation open house. I wasn't anticipating, however, just how perfect it was going to be.  The weather was absolutely perfect without any humidity or more importantly, without any wind. Even when it did rain for a brief spell, it came straight down and we stayed dry underneath the shelter. The cake was the perfect size and was all eaten up (along with the extra doze

Just recently I was able to go away for the weekend - for fun! For the first time in 18 years, I was able to travel to another city, stay overnight, and not have any doctors appointments or procedures. And what made it even better was going with my sisters!  Faith was well-looked after by respite care. She even had a friend come over to visit and her grandparents, too! Of course getting away did not come without a challenge or two.  The day before leaving, as I was cleaning the entire apartment and getting ready to pack, a staff member at Faith's day program told me her feeding pump was not working. I only had an hour before I had to pick her up so I cruised down to our DME provider and asked if I could get a loaner pump since hers was not working.  Unfortunately, they no longer carry the type of feeding pump she uses, so I needed to get a whole new system. This required me to learn how to use it and then make sure Faith's respite staff and her day program staff was going to kn

Oh. My. Goodness. What a month! It's certainly been challenging, but thankfully there were a few bright spots to help us through. At the very end of September, both Faith and I came down with colds. They would not go away! Faith was really stuffed up and seemed pretty miserable. I thought she might have a sinus infection so I took her to the walk-in clinic. Although I didn't think we had COVID, I asked to be tested just to help give me a peace of mind.  They only had the nose swab available. I was nervous about it being traumatizing for Faith. As we waited for the nurse to come back in the examination room with the test, I prayed for Faith that she wouldn't have a tough time. I should have remembered to pray for myself!  I told Faith I would go first so she would know what to expect. When they stuck the swab way up my nose, I nearly started crying. It gave me flashbacks to when the breathing tubes got pulled out of my nose following open heart surgery. It was sort of the sa

As I'm writing this blog post, it is currently 25 degrees outside. With the windchill, it feels more like 12 degrees. That's cold for October. Even in North Dakota! Winter definitely seems like it's here. Earlier this month we had a historic blizzard that dumped 13 inches of snow on Bismarck and over 2 feet of the white stuff in other parts of the state. As a result, the public schools had their first official snow day. I was ready to give Faith the day off from her lessons at home, but she still wanted to do them! First major snowfall of the year - in October! (Thanks mom for the pic!) It could have been a snow day for Faith but she still wanted to do school! It did warm up soon after and all the snow melted but the October blizzard created quite a mess for farmers and ranchers who still had crops in the field and cows in the pasture. I was very grateful that we didn't have to go anywhere - for school or for work. I am still freelance writing from home. Rec

Grandma Dorothy holding me at 5 months of age In February, 1974 when my mom took me home from the hospital, she thought she had a perfectly healthy baby. But when her mom came for a visit five weeks later to see her granddaughter, she asked why my lips looked discolored. Grandma Dorothy also noticed I slept a lot, even for a newborn. Mom assured Grandma she would ask the doctor about it during my six-week checkup. Mom took me to the same clinic in Wolf Point, Montana, where I had been born. She and Dad were living in a tiny town called Luster, where Dad worked as a ranch hand. My regular pediatrician was unavailable. A young doctor, fresh out of medical school, examined me instead. Dr. Mattley quickly agreed the bluish tint to my lips was disconcerting and because of it dubbed me a blue baby. “Her body isn’t getting enough oxygen, which is why her lips and fingernails are cyanotic,” he said. He also detected a heart murmur. An X-ray confirmed a possible heart defect. F