Faith's Mom's Blog

Growing up, I never honestly thought much about what it would be like to be a mom one day. In my preteen years, because of the heart condition I was born with, my cardiologists told me my heart would never be able to handle a pregnancy. I determined that when I grew up, instead of having kids, I would have lots of pets. I loved cats, dogs and horses and envisioned a future with at least one or two of each.      Growing up, being a mom is something I never thought I would be I was fine with the fact I would never be able to have a baby. I really was. Until the day in my early 20s, I visited a friend in the hospital who just had a baby girl. I walked in to see a tiny little bundle wrapped in a pink blanket snuggling in her mother’s arms with daddy beaming with pride alongside the bed. I was not prepared for the emotion that would stir my heart. I put on a smiling face for my friend but left the room in tears. I would never have that opportunity, I thought. I would never know what

It was 35 days ago that our calendars told us it was the first day of spring. In North Dakota, we usually can't depend on the calendar to determine when spring will actually come. We know this, but every year, we still wait expectantly for spring to come - for the weather to turn warmer, for all the snow to finally be gone and for the grass to start turning green again. And for every one's favorite part - putting away all of our winter garb and donning our spring jackets. None of that has happened so far. Thirty five days later, we are still waiting. Faith not looking too thrilled about still having to wear her winter coat and mittens Just last week Bismarck broke their one-day snow fall record when we got over 17 inches of fresh white stuff. Church services were canceled on Sunday and on Monday the whole city shut down. Faith got a snow day from school and I did as well from work. Thanks to a few days that the temperatures climbed to above freezing, most of the snow has m

Our church service (along with many other services throughout the area) was canceled today because of our spring blizzard. So while I didn't get to go to church, I was still thinking about it! The photos from this post were actually taken from last week's church service.  Finding “the perfect” church is not an easy thing to do. Especially when you are trying to find one that works well for each member of the family, one of which has special needs. For me the perfect service consists of charismatic praise and worship, an inspiring, truthful message followed by fellowship with other church attendees. For Rob it is different though. He could give or take the praise and worship and get right down to the sermon – the more intellectual the better. Rob likes to take a message he hears and chew on it for days thinking, pondering and mulling it over. And then there is Faith. She does not like loud and she does not like microphones, sudden clapping or spontaneous "Amens

Have you every 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 everyday 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 the kids. 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 when we see her pediatr

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 was it a major inconvenience when 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 beca

As with most kids in this country who have a physical impairment, our daughter has access to one of the most basic necessities of a handicapped child - a wheelchair. But for those disabled children in third-world or communist countries, many children with cerebral palsy or similar disabilities cannot so easily attain a a much-needed chair that offers the simple gift of mobility. For just a $150 donation, a pediatric wheelchair can be given to a child in a third-world country It is truly heartbreaking that these children who have no means of mobility are left home to lie in bed all day while their parents go to work. These children cannot attend school because they have no way of being transported to school or even the ability to sit up while at school. Some children who may have use of their upper bodies crawl on the ground to get from one place to another. The worst part for these families is that they are looked down upon for having a child with special needs. Sometimes the fa

It's hard to believe that it was nine years ago today I was taken by air-ambulance from the hospital in Williston to the Mayo Clinic in Rochester Minnesota. Faith was very unexpectedly trying to make her way into the world 14 weeks early. The doctors and staff in Williston knew they did not have the expertise in dealing with a mom with a complex heart condition having a baby born so prematurely. I had been planning on having Faith in Rochester but not this soon! After all, my due date wasn't until January 6th. After getting to Rochester, I was in the hospital for five days hooked up to a baby monitor. Faith seemed to be doing well and I was no longer going into preterm labor. Although I wanted to just go back home, the doctors thought it would be wise for me to stick around Rochester, just in case. The TravelLodge became my temporary home. Faith in the NICU in Rochester, Minnesota where she was born Rob had been going back and forth between Rochester and Watford City. An

This week has definitely been interesting for our family. I started my new work schedule on Monday and it was so wonderful crawling into bed with Faith in the morning and gently waking her up. When she realized I was in bed with her, she said, "Mommy are you getting me ready for school today?" I pretended not to know how to get her ready for school so she proceeded telling me what to do and in what order. When I gave her a kiss goodbye she had the sweetest smile on her face. Me and my sweet little girl Rob was able to drive me to work since he needed the van that day. It all worked out perfectly and I was so happy to have spent the first part of the morning with Faith. Now fast forward to Thursday. Faith woke up saying she didn't want me to get her ready for school and when I tried to start the routine she became quite upset and demanded me to call the school to cancel. Where oh where was my sweet little girl? Her fit escalated to screaming and yelling for over an

In the year 2000 I rededicated my life to Jesus while living here in Bismarck, North Dakota. Just two months later I moved to North Carolina with my sister, Tesa. While in North Carolina, I made the decision to not do the dating thing and prayed that God would lead me to the man I was to marry. To my amazement, that man happened to be living in my hometown of Watford City. I met him while going home for a long weekend just before my 28th birthday. In April of 2002, I moved back home and one day while Rob and I were driving home from having dinner in Killdeer, we saw the most magnificent double rainbow while going through the Badlands. It was an unspoken sign to both of us that we were meant to be together. We married on September 7, 2002 on the edge of those same Badlands in a little country church. In December we drove all the way to Toronto, Ontario - Rob's hometown - for a second wedding reception.Our life was a little crazy when we first got married as we were trying to r

Rob and Faith celebrating Independence Day at the Capitol Building I was so proud of Faith today - she went to children's church all by herself! The few times Faith had gone before, she didn't want to go by herself so I went with her. Going in with her last week was sort of a bummer because I missed a really great sermon on the kinds of things we were going to be doing in Heaven. But this week, Faith went by herself and when I peeked in the window, she was talking away to the children's church teacher. When I went in to get her, she told me very excitedly that she had just learned a lesson. When I asked what about she said, "A lesson about God." I think Faith is getting a boost of confidence because she has been going in for prayer at the Healing Rooms by herself too. When we go to the Healing Rooms, we write down our prayer requests, give them to whomever is at the desk and then go into a prayer room to be prayed over by those on the Healing Rooms tea

Guest Post by Russel Kelfer You are who you are for a reason. You're part of an intricate plan. You're a precious and perfect unique design, Called "God's special woman or man." You look like you look for a reason.  Our God made no mistake. He knit you together within the womb, You're just what He wanted to make! The parents you had were the ones He chose And no matter how you may feel,  They were custom-designed with God's plan in mind, And they bear the Master's seal. No, that trauma you faced was not easy; And God wept that it hurt you so. But it was allowed to shape your heart So that into His likeness you'd grow.  You are who you are for a reason. You've been formed by the Master's rod.  You are who you are, Beloved, Because there is a GOD.

Rob and I have certainly had our share of transitions since getting married nine years ago. About seven months after having Faith, we closed our desk-top publishing business in Watford City and made the move to Bismarck. This was all totally unplanned but due to Faith's medical needs, we felt God was preparing the way for us to make such a huge transition. Since coming to Bismarck, there have been more transitions including a few moves from apartment to apartment and having to get used to Faith's adaptive equipment, tube feedings, and the many therapy appointments that go along with having a child with special needs. It seems that just when we get into the groove of a new transition, another one comes our way. And more often than not, they are quite unexpected. This latest transition involved me going back to work after being home with Faith for three years while Rob took his turn once again to be a stay-at-home dad. At first, Rob and I were a little stunned about our situa

Faith did great yesterday getting her x-rays taken. She stayed nice and still so that the technicians could get three good pictures of her hips. Shortly afterwards we headed upstairs to talk to the doctor and to see the pictures we had just taken. When the doctor pulled them up on the computer, even I could tell it wasn't good news. Faith's left hip has proceeded to come out of its socket. We had been hoping and praying for no changes, as the last two x-rays have shown. This time, though we could clearly see this was no longer the case. Her hip is about 40% out of its socket. At this point, we know we have to take action. If not, Faith's hip will, over time, become completely displaced. We set up a consult with a surgeon for November 1. From there we will set up another date for Faith's surgery to get her baclofen pump . This will be the first procedure for Faith where she will have an extended hospital stay - most likely 3-5 days. Thankfully, this can all be done h

Have you ever experienced a time in your life when you were flying high full of joy one day then the next something comes along that completely bursts your bubble and you end up feeling totally deflated? This is what I call a joy buster. I had one of these real joy buster moments this past Sunday. I wanted to take our van somewhere so I could practice getting Faith in and out of it and to make sure I could do her tie-downs correctly. We were in the Healing Rooms parking lot when I got her out, showed her they were closed (she really wanted to go that day) and then upon getting back in the van discovered it wouldn't start. Thankfully, I had a cell phone with me and was able to call Rob to come and get us. On Monday we called VMI, the company who put in the electrical system to make it accessible. We thought something might have to be reset or there was a safety feature we didn't know about. VMI gave us something to try and I was full of hope. But it still wouldn't start.

Ever since finding out Faith was going to be needing some sort of wheelchair for mobility, my husband and I knew that one day we would need an accessible van. Until that time, though, we knew we would have to make-do without one. After Faith outgrew her regular car seat and needed more support, we were able to acquire an adaptive car seat called the Special Tomato using funds from GABR . Faith's first wheelchair was a pediatric wheelchair called a Kid Cart - which came apart and easily fit into the trunk of our car. But after outgrowing that, her chair became much bigger and much heavier as well. Thankfully, we were able to take the seating system off of the base and then put the seating system in the passenger seat of our car with the base in the trunk. All of this required lots of lifting. Here's how that process went: I knew after her chair was upgraded with a new back and seat, not to mention the fact that Faith just wouldn't stop getting taller, we were gettin