Thursday, July 29, 2010

The Little Baker

Faith loves to bake. And as she informed her respite care provider the other day, "I'm really good at mixing!"

She likes to watch all of the ingredients go into the bowl, and then I help her stir it all together. She watches intently as I put the baked goods - usually muffins or cookies - into the oven. I turn on the timer and she knows our creation is ready when the bell goes, "DING!"

I'm not sure if it's a good thing or not that I don't really bake all that much. Probably better for weight control but those baked goods sure are yummy with a cup of coffee. Faith still gets her baking time in though as all of her respite care providers have baked with her at one time or another. One of her providers even bought her the cutest little apron.

Yesterday, while Kimberly was watching Faith, she informed Kimberly that she wanted to make something in the kitchen. So she and Kimberly searched in the pantry for something they could make. Aha! A little box of Jiffy cookie mix was sitting on the shelf. I was in the back room working on my computer when I thought I heard drawers opening and closing, pans clanging together and lots of giggling. I just figured Kimberly was fixing her lunch and Faith thought it was funny.

Then I heard Faith and Kimberly coming down the hallway. Faith sounded very excited. She was making that sort of high-pitched squealing noise she does when she's up to something. I heard them get closer and closer then there was a knock at the door. When I opened it up, Faith could hardly contain herself. "I want to show you something we made for you, mommy!" She was smiling so big as she said the words that I barely understood her.

On a plate on her lap was a large sugar cookie. I told her, "Oh thank you Faith. It looks delicious!"

Even though she had lots of help, baking cookies was all her idea. She was so proud of herself and I was proud of her too. And the cookies really did taste good - daddy proved that when he came home for lunch and ate three of them!

I will never forget her giggling and squealing with excitement wanting to show me something she helped make. It really was one of those precious moments that a mom never forgets.

Faith having fun mixing when she was four years old.

Tuesday, July 20, 2010

Having Our Only Child

Growing up, I really never thought about having children. The fact was, my cardiologists always told me I would never be able to have a baby. It never really bothered me. Instead of having children, I figured I would just have cats and dogs. Seriously, I loved animals and the pets I had while growing up gave me great comfort and lots of joy.

Then one day, as a twenty-four year old, I went to visit a co-worker who had just had a baby. When I left after seeing my friend and her tiny little girl, I felt sad that I would never be able to have that experience.

Fast forward two years. Due to the heart surgery I had when I was 25, I was doing very well, healthwise. I was also seeing different doctors - those from the Mayo Clinic in Rochester instead of those in Minneapolis. These cardiologists told me they had success with women who have had the fontan surgery having babies. So, after getting married in 2002, my husband and I decided to go for it.

When I did find out I was pregnant. I was in shock. I didn't quite believe it. I had been told for so long I was never going to be able to have a baby, yet there I was, pregnant. Because of my heart condition, the pregnancy was not without risk. My doctor referred me to another doctor in Billings, Montana who specialized in high risk pregnancies. It was a five-hour drive but much closer than driving to Rochester. In Billings, we found out we were having a girl. I was elated! They were able to do 3D ultrasounds of the baby and her heart to make sure her heart was functioning as it should. (congenital heart defects can sometimes be inherited.)

At one particular doctor's appointment in Billings, my doctor told me after talking to the cardiologists at their hospital, that they did not feel comfortable with me having my baby there. They had never had a patient with such a complex heart condition. I felt sort of rejected like they didn't want me. Looking back, I'm very glad they realized their limitations. Our plan was that I would go to Rochester about a month before I was due (which was January 5, 2004). I would then be near the Mayo Clinic when it was time to have the baby.

Things did not work out according to plan. For some unknown reason, I went into preterm labor on October 4, 2003. My husband drove me to Williston and after arriving at the hospital, we were told I was having contractions eight minutes apart. I was stunned. I couldn't really feel them. They did an ultrasound and that's when I started crying. I became worried that we were going to lose her. She was only 26 weeks at the time and probably weighed just over one pound. She seemed okay. They decided to fly me to Rochester where they would be better prepared to deal with a woman having a complex heart condition going into preterm labor.

Faith at 10 days old
In Rochester, there were no more contractions. They gave me a shot in the butt which was a hormone to help the baby's lungs develop more quickly. She stayed in utero another three weeks. I had her at 29 weeks and she weighed 2 lbs. 6 oz.
Faith at one month old
We discovered when she was six months old that she probably had cerebral palsy. We moved from our home in Watford City to Bismarck so she could get the best pediatric therapy and medical treatment possible. At the time, she required all of our energy. Rob and I were both stressed and overwhelmed. But after a couple of years, I really wanted to have another baby. I didn't want Faith to be an only child. I really wanted her to have a sibling. My cardiologist gave me the go ahead as long as it happened while I was still in my early thirties. The older I became, the higher the risks, especially for me because of my heart condition. Rob, however, was not so willing. He did not want to go through what we had gone through again.

A couple of more years went by. I worked with a room full of women. Every time one of them had a baby they would bring their little bundle of joy in for everyone to see. My heart felt torn. I so badly wanted to have another baby, even though my husband didn't.

Besides wanting to give Faith another sibling, I was struggling with another issue. Some Christians believe that it is best to let God decide the number of children for you. This means birth control is never an option. Some believe that birth control is the same spirit as abortion. I did not want to disobey God. By not having more children, I felt like I was not trusting God. There were some women who said they too were at risk when being pregnant but they chose to trust God and He took care of them.

Faith on her fourth birthday
Then, at my next cardiologist appointment, I was 34 years old and unable to complete a 12-minute stress test on the treadmill. The doctor told me he didn't think it was a good idea for me to have another baby. I was crushed. I knew this was it. Unless God audibly spoke to both my cardiologist and my husband, I would never be pregnant again.

Around November, 2008 my husband, who had been staying home with Faith got a job somewhat out of the blue. It was now my turn to stay home with our daughter. As the bond with my daughter grew stronger and stronger, I thought about having another baby less and less. Then one day, Faith and I went to see a friend who had just had a baby. I realized I no longer felt that desire for another baby. I really truly was content with just Faith. God had healed that hole in my heart.

Throughout Faith's life with us, there have been people who have asked if Faith is our only child. When I reply, yes, she is, I always feel like they're waiting for an explanation - like it's not normal for someone to have just one child. Even though the number of one-child families is steadily increasing, I think there is still a stigma to having an only child - that they are spoiled rotten and become problem children. Research shows that this is not the case. In fact, quite the opposite is true. Only children tend to have higher self esteem and tend to go further with education and achieve more of their goals.

Even though there are some days I still wonder if we are supposed to step out on faith and try to have another baby, I am glad we just have one child. Sometimes when I am around those with more than one child and am wondering how they do it, I can honestly say, I'm glad that's not me! Faith has brought us so much joy and she has so much love to give. I am so thankful to God for blessing us with her. Our family truly is complete with just us three. (Bloggers Note: This post is a companion piece to an article I wrote for HubPages, which can be found here.)

Saturday, July 10, 2010

Traveling with Faith

We do not travel with Faith very often. Once had to take her to Minneapolis because Rob had an interview with the INS and his wife and child were required to be there. She was only about 10 months old at the time. We also flew to Toronto for Christmas when she was fourteen months old. Both of these trips took place pre-wheelchair and pre-feeding tube so it wasn't so bad. As she got older, however, she attained more equipment and it became more and more difficult to travel with her.
There was one trip where I had to go to Rochester for possible gallbladder surgery and we actually rented a jeep in which to fit all of our stuff. The only vehicle we had was a 2001 Hyundai Elantra. It was January and very cold. We took Faith to the Mall of America (where she is shown to the right getting a feeding) so we could try to warm our spirits on such a freezing cold trip.

Two years ago, we flew once again to Toronto. It was a nightmare and we vowed never to do this again. Faith had her Kid Kart at the time, which is the smallest version of a wheelchair. We had to carry her carseat with us wherever we went because she needed to sit in that during the flight. When we flew out of Bismarck we hoped her Kid Kart would arrive in Canada all intact.

Before landing in Canada, we had to fly to Denver where we missed our connecting flight. We ended up on a plane to Chicago and ended up spending half the night in their airport. Everything was weather related so they couldn't put us up in a motel. By the time we had arrived in Toronto, Rob and I were exhausted having not slept for over 24 hours. Thankfully, Faith had slept in the airport with Rob and I taking turns holding her.

Once we got to Toronto we stayed overnight at a hotel then drove to Rob's sister's house in Peterborough, about an hour away. We had a very nice Christmas with his family but we were dreading getting on the plane again. To make matters worse, due to some mix up, Rob and Faith were on a separate plane than me. This caused serious anxiety. In Denver we discovered the footrest on Faith's chair had gotten broken during the flight. It was a good thing Faith was getting a new chair soon.

Most recently, we traveled by car to Regina, Saskatchewan over the 4th of July weekend. Somehow we managed to fit all of our stuff in our little Hyundai. Faith's seating system comes off of the base of her wheelchair and sits in our passenger seat and then the base goes in the trunk. She sits in her special adaptive carseat so there is really only room for the three of us in the car. I think we are the only family with a child in a wheelchair who doesn't own a minivan!

Faith did very well on the way to Canada, despite the fact that we barely got out of Bismarck and she was asking, "Are we in Canada yet?" She kept herself busy by telling stories, pretending to draw pictures on the window, reciting the Bear Hunt story and me and her pretending to take 10-second naps. She went for 4 1/2 hours before we got her Portable PlayStation out so she could watch videos.

We did her feeding in the car, which wasn't a big deal. The bigger challenge was finding a place to change her. We couldn't change her in the back seat of our car because there's simply no room. We stopped in an undisclosed small town gas station hoping they would have a large enough rest room for me to lay Faith down and change her. Thankfully, they did! I was relieved but a bit annoyed by the people in the gas station - they acted like they had never seen a little girl in a wheelchair before. Who knows, maybe some of the hadn't. Or maybe I'm just used to Bismarck where everyone seems so disability sensitive, going out of their way to help with doors and at least offer a smile.

Finally, we reached the border, showed them our passports and we easily entered into Canada! At our hotel, there was limited floor space so it was hard to get Faith's chair around in our room. But, they did have a swimming pool which Faith was very excited about and we went swimming as soon as we could.

This was a rare vacation for the three of us and we had fun swimming, going to the park and eating out. We also reconnected with one of Rob's friends, Scott with whom he had transferred from Toronto to Regina with during one of his computer gigs.

On the way back home, Faith didn't do as well since she hadn't really slept that great in a strange place. She tried her hardest to be a trooper but all she could talk about was wanting to be at home. Finally, after driving through a storm, making a final stop at Tim Horton's in Weyburn, Rob getting pulled into the office at the border (I guess the border patrol was doing a good job because they were pulling all the cars in which is something neither of us had ever seen before), we finally made it back to North Dakota. We ended up driving through some more rainy weather but once we got to Bismarck, everything was sunny, calm and peaceful. Home sweet home.

Thursday, July 1, 2010

The List

It's one of the most anticipated events of the summer. We wait and wait and try to be patient. We moms question each other why it hasn't happened yet. We begin to stalk the school, driving and walking by even when it's well out of our way.  Then, finally, it's there. We see it! The white paper with typed names posted on the school door. The class list is out! Moms, dads and kids alike rush to read the list. And then everyone walks away, some with smiles on their faces while others with tears in their eyes.

I was one of those with tears in my eyes as I looked at the class list. Faith did not get the first grade teacher I was hoping she would get. She did not get into the same classroom as one of her best friends. And she will only know a few little girls in her class. BUMMER!

I felt a little better after talking to one of my good friends. Her son had the teacher that Faith will have this fall. She said she believes Faith will do well with her. I had been hoping Faith had gotten another teacher whom she has gotten to know through summer school, but that won't be the case. Hopefully, her instructional aide will remain the same as last year, at least for part of the day. Faith needs that familiarity to feel comfortable. And at least she will have all of the same therapists and special education instructor. That is a relief as well.

But still. I think parents always want their kids to be in the same classroom as their kids' friends. It just helps them to not feel so insecure and isolated. I remember being in elementary school always wanting to be in the same room as my best friend. Sometimes it turned out that way, other times it did not. And when it didn't, I just made new friends. And that's what I have to hope for Faith. She will make new friends. She will meet other little girls and boys who will want to give her a helping hand. I trust God for that to happen.

I know there is nothing I can do to change what is on The List. Now I can only hope and pray that everything will work out. After all, God knows what is going on more than I do and I need to believe He has placed Faith where she needs to be. It's just a little disappointing when things don't turn out the way you hoped they would. But hey, that's life. I know in the future there will be other disappointments, but I believe the times of joy, especially with Faith, will outweigh all the disappointing ones.