Faith's Mom's Blog

Have you ever felt this way?  I know I need to lift my eyes up But I'm too weak Life just won't let up And I know that You can give me rest So I cry out with all that I have left My prayers are wearing thin And I'm worn  Even before the day begins I'm worn I've lost my will to fight I bet there are a lot of special needs parents or parents with very young children who can relate to these words. I know I can. Whenever I hear the song, Worn which contains the above lyrics, I am transported back in time when Faith was a little baby.  I was working full time during the day and trying to look after her at night. She did not sleep well, which meant neither Rob nor I sleep well either. To make things even harder, Rob worked overnights on the weekends. I was in a major state of sleep deprivation. I started drinking caffeine and eating sugar every day at work to help me stay awake. It didn't help that my thyroid was out of whack. Eventually I...

Earlier this week I had my annual appointment with my pacemaker doctor who comes to Bismarck from the Mayo Clinic in Rochester, Minnesota. It is a huge blessing that I don't have to travel to Rochester, which is about 600 miles from Bismarck. I really truly thought I would be in and out - a quick ekg, a quick pacemaker check, a quick chat with the doctor, and I would be done. I scheduled the appointment at 8:00 a.m. thinking I would make it to work just in time for my 9:00 shift. Boy was I wrong! I got up to the pediatric floor at about 7:50 a.m. Yes, the pediatric floor because the doctors who come from Mayo specialize in pediatric cardiology, so they are mainly there to see kids with heart defects. But since more and more kids have been surviving heart defects and growing into adults, some of these pediatric cardiologists specialize in adults with congenital heart conditions .   Anyway, so there I was on the same floor with all the kids - the same floor I take Faith to...

It seems we've been celebrating Valentines Day all week as we spent Monday, Tuesday and Wednesday making our homemade Valentines boxes and cards. Faith's class had a party today and we had our own "old school" Valentines Day party at work. Faith normally doesn't stay at school on Thursday afternoons, so we decided to give her the choice of whether or not she wanted to stay for the class party. I was a little disappointed when she said she didn't want to stay for it because I don't like her to miss out on doing fun things with her classmates. I do think though that the parties can get a little chaotic, and I know it's hard for her to relax in that kind of atmosphere because her startle is constantly kicking in.  Still, after dropping her off at school I couldn't help but feel a little sad that she was going to miss out on the party. We did have fun making the boxes and cards and looking at all our Valentines together this evening after I got home....

I have recently connected with another blogger who is the mom of a sweet boy with special needs named Silas. You can check out her blog at A Boy Named Silas . She is truly an amazing mom, and I just ordered her book which is an account of the time they spent in the NICU with Silas. She just nominated me for The Liebster Award - Special Needs Edition . Thanks, Alana Terry ! I was very surprised, humbled and honored all at the same time. The Liebster award comes with certain rules, one of which is sharing 11 facts about myself: 1. I took piano lessons for eight years 2. I would love to have two Doberman Pinschers someday 3. I work for a health insurance company 4. I have only colored my hair once in my life 5. I’ve never had a massage (by a professional) 6. My all-time favorite movie is still Footloose 7. I’ve had a pacemaker since the age of 25 8. Along with my journalism degree, I also have minors in speech communications and animal and range sciences 9. I...

We are currently on day four with no working elevator in our apartment building, one that it is supposed to be handicapped-accessible. It has been a little frustrating to say the least. It was supposed to be fixed on Wednesday afternoon, but we are still waiting. No working elevator in this apartment building It has been going out off and on recently, but just once, it was a major inconvenience. We were getting Faith ready to go to school and realized the elevator was not working. Needless to say, she was late for school that day. This time we discovered the elevator was out on Monday after we called the Healing Rooms and realized they were open. We gleefully got bundled up in our winter attire - even the below-zero temperature was not going to stop us. We ran into a major disappointment though when we got to the elevator and realized it wasn't working. We went back to our apartment and figured out what to do next. We thought about having the Healing Rooms come to us becau...