Faith's Mom's Blog

This year has certainly been a mix of blessings and challenges. Faith kicked off the New Year by getting another UTI. Along with that, she somehow managed to break a bone in her wrist and had increased anxiety due to some staff changes at her day program.  Also, she had gotten a new chair last August and we've already had to make numerous repairs and adjustments. All of these things have resulted in many extra appointments with doctors and specialists, including a urologist, orthopedist, psychiatric nurse practitioner, and DME technician.  Thankfully, the broken bone in her wrist healed on its own! We also got some good news that the slight curve in her spine has not gotten any worse and she doesn't seem to be having any pain in her back or hips.  We still don't have answers for the recurrent UTIs, and she is recovering from another one as I write this. I have tried a few different supplements to prevent them but haven't found the right one yet.  Hitting a huge miles...

It's hard to believe that Faith is 19 years old and has never had a major illness or extended hospital stay since she was in the NICU. The only other time she had to stay in the hospital was when she had her g-tube placed when she was two years old. That is, until now. And to think it all started with her having a simple outpatient procedure that had nothing to do with the reason she was hospitalized.  Day 1: Thursday - the Procedure  Faith and I got up extremely early as she had to be at the clinic for her outpatient procedure. The procedure was a lumbar puncture in order to do a test dose of medication called baclofen, which would help reduce high muscle tone and spasticity. If the results were good, and it helped her muscles relax, we would have the option (in the future) of inserting a baclofen pump so that she could receive the medication continuously via a catheter in her spine.  I stressed the importance of giving her anti-nausea medication before the procedure bec...

Last year I had a tough time getting used to the idea that my daughter had somehow turned into a teenager. This year, I'm having a hard time believing that my daughter is 14 years old. 14! How in the world did that happen? Admittedly, her birthday started a little rough with Faith waking up saying she didn't want to celebrate. I chalked it up to her being really tired due to her long day on Tuesday which had begun at 7:30 a.m. If you know Faith, you know that is really early for her. Somehow in the midst of her crankiness, we managed to get her up and into her chair for her first feeding of the day without the occurrence of any major battles. When Faith heard her auntie Joh singing Happy Birthday to her while leaving a message, her mood shifted to being happy and joyful. We called Joh back, who had taken time during her lunch break to make the birthday call. We also talked to her grandparents in Canada, which helped as well. After the phone calls, she decided she d...

This past year has been one of the more challenging ones we've had in light of caring for our daughter. As she has gotten heavier, I found lifting her has presented opportunities for straining my back. Thankfully, I’ve been able to receive healing through both prayer and the hands of a wonderful friend who is also a massage therapist. At the same time, I know I can no longer lift Faith as I once used to. Faith hanging out at the eye doctor. She received a good report and still does not need glasses!  Another huge change is that this past spring, Faith officially became a woman. While this is usually something for girls to celebrate, for us it provided a new set of challenges, including major PMS symptoms. Her sensitivity to loud noises heightens during this time and her already high tone kicks into overdrive, causing her to be very uncomfortable in her chair. Because of her discomfort, we have spent a lot of time sitting on the couch together. A benefit of this for me is I...

Twelve years ago in late April, we were given the dreaded news that our daughter had spastic quadriplegia - the most debilitating form of cerebral palsy.  I will never forget looking down at my six-month old baby, fast asleep in my arms, while her doctor talked about the possibility of her being in a wheelchair as she became older.  At the time, it was not like me to show such public displays of emotion but on that day I couldn't hold back the tears. In the days that followed I had so many questions.  Of all the questions though, there was one that I asked more often than others. "Can God heal my daughter?" I came to believe that He could, even though I knew it would take a miracle.  Faith shortly after we brought her home from the NICU where she had a 73-day stay By definition a miracle is, " an unusual or wonderful event that is believed to be caused by the power of God." When a true miracle occurs, there is usually no scientific explanation for ...

For the past couple of years instead of making New Year's resolutions, I have instead chosen just one word to focus on throughout the year. (I got this great idea from my friend, Fran Dwelle. Last year my word was strength, and my corresponding scripture was " The Lord is my light and my salvation, whom shall I fear? The Lord is the strength of my life, of whom shall I be afraid?” (Psalm 27:1). This year, without even realizing it rhymed with the age I would be turning, I chose the word, "RENEW." The corresponding scripture the Lord gave me was this one: Create in me a clean heart O God and renew a steadfast spirit within me . (Psalm 51:10) First and foremost, the one thing I wanted to renew was my relationship with the Lord. Not that I felt I had fallen away or anything but because I wanted to have a deeper, more intimate relationship with Him than ever.  I have a strong desire to hear Him more clearly and to operate more in the realm of the supernatural. (Edi...

It has been a truly amazing weekend! I am feeling tired but have so much peace right now. Today we had the honor of meeting Cal and Michelle Pierce, directors of the Healing Rooms Ministries. They were also the speakers at the Love Unleashed conference held by the Healing Rooms of the Northern Plains. Me, Rob and Faith with Cal and Michelle Pierce Yesterday, Rob, Faith and I ventured to the Belle Mehus for a couple of sessions of the conference. We knew it would take some coaxing to get Faith there as she generally isn't too sure about new ventures. It helped she's been to the Belle Mehus before so at least the venue was a little bit familiar to her.  Faith received a very warm welcome when we arrived. She was happy to see so many volunteers from the Healing Rooms all gathered together at the same time! She also seemed to enjoy the worship. That was familiar to her too since the members of the worship team were from our church! We were delighted to hear Michelle P...

It seems the only time I've been updating my blog lately is when the seasons change! This time, though besides the season changing from summer to fall, there are some changes happening with us as well. Faith in her new chair - another recent change for us! Many of you know I quit my full-time job in the spring. My last day of work as a customer service representative for a health insurance company coincided with Faith's last day of school. I have been focusing on freelance writing full time. It has certainly been a time of depending on God to continue to supply for our every need! As a new school year approached, we decided not to send Faith back to school. After praying about it all summer, we made the decision to home school her instead. As I dropped off our paperwork to inform the school district of our intention, I felt an incredible amount of peace. To me, this is a sure sign that we made the right decision. Faith and friends at a library event Faith with ...

It seems to me that God knew what He was doing when He made Rob Faith's daddy. Ever since Rob first met his tiny little girl in the NICU over ten years ago in Rochester, Minnesota, it was love at first sight. But his love and prayers for her didn't start there - it all started when we first saw the picture of her in my womb and we heard her heartbeat for the first time. He has loved her and prayed fervently for her ever since. Kangaroo Cares Snuggling One of the most wonderful fruits of his prayers for her is her love for Jesus and for others. She truly does love people and makes a point to remember people's names and ask them all sorts of questions about their life because she really is interested.  She loves to see photos of people's spouses, babies and even pets. Something else she has a result of her daddy's prayers is her own faith that keeps her strong and keeps her going through the difficult times. Story Time Play Time I love that Faith has...

One of the main reasons we sought chiropractic care for Faith was to help her with her startle reflex. Most people startle when they hear a loud, sudden noise but for Faith her startle can be debilitating. When she was younger, if she startled often in a short amount of time, she would break down in tears. Her startle made it difficult to do things like being in a school program or going to the movies. It was hard to watch her startling constantly during a church service when someone spoke into a microphone. Her whole body would tense up making it impossible for her muscles to relax. Besides her startle, we were also having a tough time dealing with her emotions and behavior. She would have screaming fits that left me and Rob feeling helpless, not knowing what to do to help her. We thought as she got older, things would get better. But last year during school, her tantrums escalated, and we chalked it up to pure exhaustion. Her pediatrician even agreed she was just too fatigued a...