Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts

Sunday, May 7, 2023

Dance, Dance, Dance!

Faith loves going to plays, musicals, ballet performances, and other events in which her friends perform. When she was younger, I thought attending these things would be too overwhelming for her as she has a strong startle reflex. Usually, it's loud sudden noises that trigger a strong startle response. I figured out though, that as long as the noise is constant, and she knows what to expect, she actually does very well. When I found out that Dreams in Motion was doing wheelchair dance again this year, I figured she would want to do it. When I asked, she enthusiastically said, "YES!" 

She was so excited to go to her first practice. She told everyone she saw that she was going to be in a dance performance! During practice, we found out the theme was Encanto (which we have never seen). They were going to be dancing to a medley of songs from the movie. There were about a dozen participants, some with manual wheelchairs and others with powerchairs. 

During practice, each of them was paired with a volunteer who helped them move and do the dance moves. Faith even had a little solo part in which she had to carry a coffee cup to the dance instructor and hand it to her when she said, "And that's why coffee's for grownups!" 

Faith was all smiles during her first dance practice! 

The following week, Faith had dress rehearsals in which they received their costumes. Each participant and volunteer got to wear a little tiny sombrero along with a colorful poncho. They also practiced with the props that were a part of the performance. 

It was great seeing everyone have so much fun together. Faith knew a few of the participants from past Dreams and Motion events (such as wheelchair soccer and track and field). She also knew some of them from where she goes to therapy and her day program. A few other moms remarked how comical she was. She certainly does love to make people laugh! 

Faith laughing at Coach Lacey. 

Faith with her super fun partner, Liz! 

Practicing her coffee cup part. 

The actual performance was held at Shiloh Christian School and hosted by Just for Kix, which is a dance company in Bismarck. There were 3 performances, and the wheelchair dance group would be participating in 2 of them. The first performance was at 10:00, which meant we needed to be there at 9:30. Thankfully, the school was less than 5 minutes away from where we lived. 

We were told that the show would be standing room only, so I was expecting mass chaos upon arrival. Even though we arrived 30 minutes before the show started, the parking lot was already full. I wasn't sure how I was going to get Faith unloaded on my own and then park. (Of course, all the handicap spots were taken!) I was thinking I could text my parents, who I knew were probably already inside, and ask for their help. Then, I looked and saw a good friend walking through the parking lot with her granddaughter. I honked and asked if she could take Faith inside and wait with her while I parked. Talk about God's perfect timing! 

Inside, we found our group and just hung out until it was their turn. There were about 9 or 10 teams before them. Finally, I let Faith's partner take over and went to find a spot to record their performance. They all did so great! Even when one of the props kept falling over, they just rolled with it and didn't let it phase them. Faith wasn't nervous or scared or anything - I was so proud of her and everyone else! 

Here they come! Faith didn't even seem phased by the packed gym. 



When they finished, I heard a thunderous round of applause and then everyone began to stand! My eyes instantly filled with tears. I really felt like these wheelchair dancers had inspired everyone in the audience, including the other dancers. Afterward, I hurried to the lobby, found Faith and told her that she did it and I was so proud of her! All of the performers were super excited and some of the moms had tears in their eyes, too. 

Since we had a few hours before the next performance, I debated on going back home for a bit. I decided against it, though as I didn't want to have to deal with parking again. My parents came into the lobby and told Faith what a great job she and everyone else had done. I told them I wasn't prepared for it to be such an emotional experience. Mom said there were even people in the stands crying. 

So glad Grandpa and Grandma could make it to the performance!

Me and my dancer! 

During the break, Faith ate a bag of animal crackers and I grabbed a hot dog. We had a nice time just visiting with other parents and their kids. At one point, I took Faith into the bathroom to give her some water through her g-tube. There were some other dancers in there and Faith tried to strike up a conversation with them. She really isn't afraid to talk to anyone! Out in the lobby, she continued to compliment the other dancers on their hair and their costumes. We were sitting right next to the table where people came in and paid and she tried to talk to almost everyone there, too. I told her she really didn't have to talk to everyone! (She gets it from her Grandpa!) 

Finally, it was time for performance number 2 and they did just as well with another standing ovation. Afterward, the group took some pictures, handed out certificates, and then Faith was ready to head home. It had been an exciting day and she was ready to just relax! All in all, it was a great experience and she already can't wait to do it again next year! 

Coach Lacey handing Faith her certificate. 

Faith's certificate and flowers from Grandma! 

Thursday, November 12, 2020

Faith's New Van

Finally, on November 4th, the day the elevator in our building was fixed, I was able to take Faith downstairs so she could check out her new van! It happened to be a beautiful day, close to 80 degrees, which is rare for North Dakota in November. We had respite care that day, so I had her record me getting Faith loaded up for the first time.  

Faith is all smiles about her new van!

Faith is ready to roll!
After loading her up, the three of us went for a fun drive including a trip through McDonald's so Faith could get a chocolate chip cookie. Faith was having so much fun as we drove around. She kept randomly shouting out things like, "Happy Birthday!" and "Merry Christmas!" (I am looking forward to driving around and looking at Christmas lights with her this year!) I guess she really does think her van is the best gift ever! 

Faith inside the van.

Earlier this week, we used the van to take her to an appointment with the general surgeon. She wanted to check Faith's stoma for her feeding tube. I'm glad to say we are making progress with getting her skin back to normal. 

We also used the van to take Faith to Inspire Collective, her homeschooling group, which finally started up this month! It is a very small group this year, but we are okay with that. Two of Faith's best friends aren't going this year, so we drove to their house so Faith could see them from a distance. It had been 8 months since we last saw them in person! 

After visiting them, we drove out to her grandparent's place. My great niece said she wanted a van likes Faith's for her 5th birthday! Faith has a few more upcoming appointments this month, and it so nice for me to take her to these appointments by myself. 

This van is such a huge blessing, and makes life so much easier. A few of my favorite features are the heated steering wheel and seats, as well as the remote starter. These features will help us get through out brutal winters! One of Faith's favorite features of the van is that the doors open and shut all by themselves. Of course we both love the ramp that comes out and goes back in with just a push of a button. One feature I have yet to show her is the DVD player! 

 




I will never take our van for granted and will always be thankful to those of you who donated to our NewWheelsForFaith fundraiser. There were also many people who shared the fundraiser on social media and prayed that this van would become a reality for us. It floors me that people we have never met also gave to or shared this fundraiser. I will also always be eternally grateful to my brother Todd, and his wife for everything they did to make this happen. We appreciate you all so much!

One more thing: for those who are wondering, the van is a 2015 Chrysler Town & Country with about 49,000 miles. The conversion is new enough that it is still under warranty. We got the van from Cummings Mobility in Albertville, MN. If anyone needs a new conversion van, I highly recommend them, as they were very accommodating and gave us a great deal!

Thursday, April 28, 2016

I Believe in Miracles

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 it. I love these phenomenons as they are a way of proving not only God's existence but his awesomeness! 

While miracles can take many forms, one of the most exciting is His miraculous healing power. I have heard many testimonies of God healing someone of an incurable disease. I have seen people receive prayer and they were instantly healed. For some, healing isn't always instantaneous but rather a process. It's really however God chooses to do it! 

 Not too long ago I was preparing a message for New Life's Redefinition Cafe service entitled, "Three Things that Can Help Us to Truly Believe 'All Things are Possible with God.'" My second point was that it's not up to us to figure out how God is going to do the impossible. 

As I searched the Internet, I came across an article about a girl who had been diagnosed with an incurable gastrointestinal disorder. She had been in and out of the hospital several times and had to take all kinds of medications. Even though she normally didn't have a lot of energy, her oldest sister had convinced her to come outside and play. After falling into a hollow tree, she went to heaven and returned to earth completely healed. Last week I finally was able to see Annabel Beam's amazing story turned into the movie - Miracles From Heaven. 

Most of the scenes in the movie that caused me to cry were the ones where the mom was doing the best she could to care for her sick child. She had given up hope and even quit praying because she didn't think God heard them anyway. She alluded to the fact that another reason she didn't want to pray is because she didn't want to be disappointed if her prayers were not answered. I felt as though I could totally relate. 

There was a time in my life where I didn't think I'd be able to bear the disappointment of God not answering my prayers for my daughter. When I did pray for Faith, I wasn't praying with belief. I can't pinpoint what changed in me, but somewhere along the way I decided that I was going to believe for Faith's healing and believe wholeheartedly for it.

Faith and I at home after attending a friend's wedding
Admittedly, there are some days I wonder if I should just give up on believing for Faith's healing. But as soon as I get to that level of discouragement, God shows me something amazing. 

One particular evening not all that long ago, I was having one of those discouraging days. A friend of mine had given me the link to a video to watch and after taking a look at it, I began searching the Internet. I really didn't even know what I was looking for until I found it. 

It was a video of a lady who had been healed of cerebral palsy 25 years ago when she was 19 years old. The lady's name is Marlene Klepees and she now goes around the country giving her testimony. WOW did seeing her story fill my heart with hope!


A few people have told me they have had a vision or a dream of Faith either walking or dancing. I truly believe it's possible, and that what He did for Anabel or Marlene, He can do for Faith. Call me crazy but isn't that what faith is truly all about? (Believing first and then seeing). Even though Faith being healed would require a miracle, I truly do BELIEVE.

How about you? Have you ever received a miraculous healing in your body? Do you believe in miracles? I would love to hear about it!

Friday, August 1, 2014

Five of Faith's All Time Favorite Books

We've been reading books to Faith ever since she was a baby.When she was little, she had to wear an eye patch for 30 minutes a day in the hopes it would help strengthen her eye muscles so they would no longer turn inward. Reading a book to her while she was wearing the patch was a great way to keep her distracted from having to wear it. Even after she no longer had to wear the patch, she continued to love being read to.
Reading to Faith when she was little
As Faith got older, we had hopes she would learn to read on her own. She is ten and that still hasn't happened. We continue to pray and try to find ways to help her be able to read. Her music therapist is trying to do all she can to help us with this endeavor. We know her vision is fine but we think her eye muscles might not be working properly to enable her to focus on seeing a word long enough to read it.

Instead of reading, she spends a lot of time memorizing. For this reason, she likes shorter books and even though I've tried to read chapter books to her, she quickly loses interest. She even memorizes the name of the author and the illustrator which is handy when we go to the library to look for books!

Daddy reading one of Faith's favorite books to her
Through the years, she has especially liked these five books:

Amelia Bedelia by Peggy Parish - Even though there is a younger and more modern Amelia Bedelia, Faith still likes the old-fashioned funny housekeeper who works for Mr. and Mrs. Rogers and has a habit of taking things way too literally. There are a lot of times I roll my eyes at Amelia Bedelia's silly antics but I must admit, she is pretty hilarious.

The Monster at the End of This Book by Jon Stone - I was amazed to see that this Sesame Street book featuring Grover was first published in 1973. That means the story is older than me! One of Faith's former respite care workers loved this book as a child and I'm glad she recommended it to us. Ever since Kimberly came for a visit last month, Faith has been wanting to read this book again almost every night.

We're Going on a Bear Hunt by Michael Rosen - This modern classic is not only a book but a video as well. There are a ton of videos on YouTube where kids do their own rendition of this popular book. (Check out one of our favorites below). I must admit when I first read it to Faith I wasn't overly impressed but she absolutely loved it. It started to grow on me though and for as many times as we've read it, I'm still not tired of it.


Curious George's First Day of School by H.A. Rey - Curious George is a cute little monkey "who's also very curious." Faith loves the most of the Curious George books but the one where he goes to school to be a helper is one of her favorites. She also likes to watch Curious George on DVD and Netflix. It's also on PBS at 7:00 a.m. but that's a little too early for us!

Franklin Makes a Deal by Paulette Bourgeois - Franklin is a cute little turtle who has lots of animal friends. There are lots of Franklin books but this one is Faith's favorite. I think it's because we're always saying to her, "OK Faith, here's the deal..." She also likes to watch Franklin on DVD.

I'm curious to know what some of your child's favorite books are. Also if your child has special needs, what are some things you are doing to help them learn to read? 

Sunday, June 8, 2014

Alternative Therapies for Faith

For most of Faith's life, we have focused on doing some of the more traditional therapies such as occupational and physical therapy in order to help her reach her fullest potential. More recently, though we have been trying some alternative forms of therapy such as chiropractic care and music integration sessions. Honestly, we have seen more progress this past year in trying these different therapies than we had been seeing with years of following traditional methods. You can read HERE to see how Chiropractic Care has benefited Faith and HERE for music therapy. 
Chiropractic care has benefitted Faith immensely
Unfortunately, most insurance companies, including Medicaid does not cover these different types of therapies as they are still considered experimental. One of the local fundraisers does not allocate funds for these alternative therapies for the same reasons. This means we have been paying out of our pockets and it is now getting to the point that we have to decide to quit doing the therapy or keep going with it.

So it is with a humble heart that I am asking for help from the readers of this blog and from those family and friends of Faith to help us in continuing these types of therapy for Faith. If you don't have the funds at this time, can I ask you to pray for us and that God would continue to guide us and give us wisdom on which types of therapies to try, which types might be beneficial and which ones we may need to discontinue? 
Integrative music sessions has helped with Faith's fine motor skills and other areas
Any help you can give in either of these areas would be greatly appreciated. If you do want to help us in our efforts to raise funds for Faith and you would like to do so online please click on the PayPal link on the top right. You will also be able to donate using a credit card. If you don't want to donate online, please feel free to e-mail me. You can find my e-mail address by clicking on 'view my complete profile' and it is listed under my contact into. Thank you so much for any help you can provide and I pray that God blesses you abundantly in return!

Sunday, November 17, 2013

Some Thoughts on World Prematurity Day

November 17 marks World Prematurity Day. One might wonder why awareness needs to be raised about premature births. Well, I can tell you you firsthand that it is a really good thing when more people are aware of the risks and complications, not to mention the emotional toll, of having a baby born too early.

Faith and Daddy
Having a baby born prematurely is not something most expectant parents think about until it happens to them. Most moms-to-be who first learn they are pregnant automatically think they have seven or eight months to prepare for one of the biggest days of their life.

Expectant parents usually have one response when asked if they are hoping for a boy or a girl - "As long as the baby's healthy." But sadly, sometimes that's not always the case - especially if the baby is born too early.

I will never forget the book I was reading shortly after finding out I was pregnant with Faith - "What to Expect When You're Expecting." It was a great resource that outlined what was happening inside an expectant mother's womb week by week for the entire 40 weeks of pregnancy. Some moms, like me, however never made it to the end of that book.

When having a baby born too early, I think it's natural that mom's first emotion is guilt and asks herself over and over again, "What did I do wrong?"

While there are things that mom may or may not have done during the pregnancy, the answer is usually nothing. A mom can do everything right during pregnancy and still somehow end up having her baby too early.  There are also moms-to-be, like me, who know going into pregnancy it is going to be high risk. They are still hopeful and do whatever is necessary for the baby to be born full term.
me and Faith after her her very first "real" bath
We know that full term babies have the best chance at starting life because they have had time to develop completely inside their mother's womb. Babies born prematurely (before 37 weeks gestation) often suffer several consequences including:
  • Underdeveloped lungs which can induce respiratory distress
  • Heart problems like a slow heart rate or even heart failure
  • An eye condition called retinopathy of prematurity (ROP)
  • Bleeding in the brain 
  • Apnea - short or long pauses between breaths 
  • Intestinal disorders such as necrotizing enterocolitis
  • Loss of oxygen shortly before, during or after birth 
  • Longer hospital stays 
  • Severely underweight and failure to thrive
  • Premature birth is the most common cause of death in newborns
It is easy to see why a mom and dad who have just had a preemie feel completely overwhelmed and anxious. But it is also wonderful to look back on your premature baby's first days of life and know how much has been overcome. During Faith's 74-day stay in the NICU, we battled many of the above complications but she came out an overcomer in many areas!
Faith with her doll, Baby Allie, who wears her preemie clothes
There is also another thought I would like to share today on World Prematurity Day. One of the most common arguments for abortion is that if a human being is not viable outside of the womb, all the more reason it should be legal to deny the baby a chance at life. In fact, when the Supreme Court ruled in favor 7 to 2 to overturn a Texas court's ruling on a case called Roe v. Wade, it was stated that "a woman has the right to terminate a pregnancy for any reason before the fetus becomes viable" At this time in 1973, that age of viability outside of the womb was 28 weeks.

But look at what is happening - because of research and awareness even the tiniest of tiny premature babies are able to survive and even thrive! The youngest of pre-term babies are born at 22 weeks and don't even weigh a pound when they are born. Thanks to medical research, we have found a way to keep these micro-preemies alive outside of the womb! This to me is just one more reason to stand for life during all stages of life - from conception to birth!

One of my friends has a cousin in Fargo whose baby was born at 25 weeks and weighed just 10.9 ounces. He was even smaller than most micro-preemies and is known as the world's smallest baby boy. At four years old, he is doing great! I thought today would be a great day to share their story: CLICK HERE

Sunday, June 2, 2013

Full of Life

Not too long ago, someone at church commented to me, "Your daughter is so full of life." I have heard lots of positive comments about Faith throughout the years, but this one brought tears to my eyes. To think that my daughter - a nine-year-old girl bound to a wheelchair was full of life - meant the world to me.

Faith's disability causes her to be different from her peers and others around her. She understands this and although she can get frustrated, she doesn't let it get her down. She has a very positive attitude about life. I give a lot of the credit to those who pray without ceasing for her and to Jesus who helps her on her journey each and every day. I truly praise God that someone who sees my daughter sees that she has a joyful life despite her special needs.
Full of joy
I know too well this isn't always the case. Usually, when someone pictures in their mind a nine-year-old who needs to use a wheelchair for mobility, gets her nutrition from a feeding tube, doesn't know how to read and still wears diapers, they would most likely classify that as having a "poor quality of life."

Unfortunately, this is exactly how our culture describes those who do not seem to contribute anything to society. This is where eugenicists have a hay day. And this is precisely why babies in the womb with known abnormalities are aborted.

I'm thankful there are those who see Faith in a different light. It seems wherever we go, we always find someone with whom to interact. Last weekend it was the mom of a little 14-month old boy who seemed very interested in Faith while waiting in the check-out line. Today at Target as Faith and I walked down an aisle, a lady asked me how old she was. Faith was the one who responded, "Nine!" She then told Faith she was just beautiful. Friends of mine who know Faith well tell me they don't see Faith as someone with a disability, instead they see someone with lots of ability.

Supergirls!
I'm curious. How do you view a child when you see him or her in a wheelchair? Do you wonder what happened to cause them to be that way? Do you feel sorry for the child. If so, I know those feelings are automatic. I was the same way before I had Faith. I was even uncomfortable around people with disabilities.

I know it may be normal to automatically think the child must have a poor quality of life. But  please, I'm asking you to try not to make those assumptions. Instead, maybe try to engage with the parent of the child with obvious special needs. There is fear in the unknown but once you know more and gain understanding, I bet you will no longer have such assumptions. And I can assure you, that the parent of the child you just interacted with will be glad you did.  
Faith scooting through the tunnel

Monday, May 27, 2013

A Jam-Packed Month of May

The month of May is already nearly over - it makes perfect sense why it went by so fast as this month was jam-packed. It's hard to believe that June is just around the corner. I can share in our pastor's sentiment when he said the year is half over but it seems like 2013 has just begun!

On the first Thursday of May, JOY International had its last Java JOY of the season. We had a great get-together as we celebrated moms and discussed the powerful prayers of a mom. We had a wonderful panel of three amazing moms who shared their hearts on praying for their children. We also shared testimonies of answered prayers for ourselves and our children. As Java JOY coordinator, I am relieved to be taking some time off but I already have lots of ideas for our next season which starts up again in September!
Me with our mom panel at Java JOY

Me and Faith on Mother's Day
Me and Faith playing our favorite game - Wheel of Fortune
At the beginning of the month we had another round of Anal Baniel Method (ABM) lessons for Faith. This time she had six lessons as opposed to four the previous time in March. In July, when Pati comes back to Bismarck we are hoping to get Faith in for eight sessions. We won't have to schedule around school so more lessons will be much easier to do.

This last time around, Pati showed us some weight-bearing techniques that do not involve her being tightly strapped in her stander. She also did something with Faith I would have never thought possible - she had Faith in a kneeling position on her knees being supported by the bed. Doing things like kneeling seems like such an easy thing to do but for a child with spastic muscles, these movements can be nearly impossible.
Pati working with Faith during a session in March
Pati said there is so much she wants to do with Faith and wishes she could see her more often. It really is optimal that when kids start having ABM, they have lessons every three weeks. With Pati coming here from Wisconsin, this is just not a reality unless we started taking Faith to see Pati in Minneapolis. There is a ray of hope, however.

One day after Faith and I were leaving from one of her lessons, we ran into one of Faith's former speech therapists. Some of this speech therapist's patients have been doing ABM. She was so impressed with the results, that she is taking lessons to become an ABM practitioner. It would be so wonderful to have someone who could be here in Bismarck full time - not just for us but for the many kids who could benefit from this alternative form of therapy.

Besides ABM, Faith has been super busy in school this month. They try to pack in as many activities as possible before the school year ends. Rob took her to two field trips - one at Bismarck State College for a water festival and one at the University of Mary for fun and safety day. She also went on a class picnic at a nearby park. Faith had a great last week of school and I know she is especially going to miss her teacher who is retiring after 30 years of teaching. 

Ever since Faith was a kindergartner at Centennial, she and this teacher have had a very special relationship. They just sort of took to each other right away and when Faith reached third grade, we were so excited that Faith would have her for her teacher. In fact, during Faith's open house before starting school this year, her teacher told her, "Faith, we've been waiting for this since kindergarten!"
Faith with her very special teacher, Mrs. Ternes
Faith with her teacher and the girls in her class
Faith with some rambunctious-looking boys
Recently this month, I took part in classes at the Healing Rooms. I have taken the classes twice before but this time, the classes were in preparation for becoming part of the Healing Rooms ministry. I have sent in my application and my pastor also sent in a letter for me. This afternoon I have my interview with the directors.

I know they are needing help in the reception area so that is what I hope to do but in the future I would love to be part of their prayer team as well.We have been going to the Healing Rooms for prayer ever since we moved here in 2004 when Faith was just eight months old. By volunteering, I am hoping to be able to give something back to this ministry that has been so instrumental in our lives.

Aunt Audrey on her 85th birthday earlier this year

On a sad note, we lost our precious Aunt Audrey on May 9th. She had been fighting various illnesses and this month, her health continued to deteriorate. It was hard for Rob being so far away as it just wasn't possible for him to travel to Toronto for the funeral.

Aunt Audrey was a very kind, caring and generous person. She only got to see Faith about three times, but Faith was very special to her. She was an avid reader of this blog and loved to keep up-to-do date with Faith and her progress. She will truly be missed by many.

I think that pretty much sums up our busy month of May. We are looking forward to using Faith's time off of school to make some changes in her therapy, her diet and other areas. We are also looking forward to seeing Rob's parents in Winnipeg next month! We only get to see them every couple of years and I know they will be amazed at how much Faith has grown this year.

Happy Summer Everyone!

Sunday, May 12, 2013

Mom - Something I Never Thought I Would Be

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 like to hold my own baby in my arms.

I got married in 2002 and my heart was doing well. My husband and I decided to step out on faith. If it was God’s desire for us to have a baby, we knew it would be so. I also knew that thanks to medical advances and further knowledge of adults born with congenital heart defects, it was more of a possibility for a woman with a single-functioning ventricle to sustain a pregnancy.

Even so, my doctor sort of freaked out when she realized I was pregnant. She hinted that I should terminate the pregnancy. When I told her that was not even a possibility, she referred us to a specialist in Billings, Montana who had experience in high risk pregnancies. I had also called my cardiologist at the Mayo Clinic and we came up with a plan that closer to my due date, I would stay in Rochester where I would have the baby.  That was the plan, but that is not what happened.

Most of you know the events that transpired: the air ambulance ride to Rochester, Minnesota when I was just 26 weeks along, the premature birth of our baby, the two month stay in the NICU.

It was nothing like the birth of my friend’s baby where I had witnessed such a happy scene in the hospital room that day. I didn’t even get to hold Faith until she was one week old. But that didn’t change the fact that I was a mom – something I never thought I would be.

As a mother of a child who was born too early and having special needs as a result, I have had my share of heartache, disappointments, discouragement and struggles. But I have also had my share of peace, joy, happiness and encouragement. The blessings have far exceeded the challenges.

Having Faith is one of the most amazing things that’s ever happened to me. I thank God every day that He chose me to be the mom of this precious daughter of mine. But most importantly through it all, I have learned that with God, all things truly are possible.

Saturday, April 6, 2013

North Dakota Becomes First State to Protect Special Needs Babies in the Womb

The state of North Dakota has been making a lot of headlines lately. In 2012 we became the second top oil-producing state in the nation and this year we were dubbed "the freest state in the U.S."

At one time, North Dakota was known for it desolation, its frigid winters and low population. Most people probably had a hard time finding North Dakota on a map. I don't think that's quite the case anymore. People are flocking to North Dakota for jobs. Our state has one of the soundest economies in the country. But even before all of our new-found popularity, I was a proud North Dakotan when it wasn't cool to be one.
Faith enjoying the sights of the Missouri River in Bismarck, North Dakota
And now, in light of recent events in our legislature, I am even more proud to be from this great state! The senate and house passed some of the most pro-life bills ever and Governor Jack Dalrymple signed them into law!

You might wonder why I'm talking about this on my blog, a place I usually write about what's going on with Faith and our world of special-needs parenting. But one of the bills passed and signed by Governor Jack Dalrymple is very near and dear to my heart - not because it protects unborn babies but it goes further than that. This bill prevents the discrimination of a baby in the womb due to their sex or a genetic abnormality. In other words, it helps protect special needs babies still in the womb.

HB1305: Bans abortions that are done only to eliminate a fetus with genetic abnormalities, or because the fetus is of a different sex than the parent desires. A doctor who does an abortion for either of those reasons could be guilty of a misdemeanor, with a maximum penalty of a year in jail and a $2,000 fine. Approved in House, 64-27, on Feb. 8; approved in Senate, 27-15, on March 15.

There are so many arguments that are for terminating a pregnancy when the baby is known to have some sort of defect. And with modern technology and the testing that can be done, ending the life of a baby who would be born with special needs is becoming more and more prevalent. In fact, 90 percent of babies who test positive for Down Syndrome are aborted. That is 9 out of 10 babies. Other abnormalities that can be found while the baby is in utero include congenital heart defects, spina bifida, cystic fibrosis, and trisomy 18. And many times, these babies are aborted as well.

I often wonder if disorders such as autism, depression, anxiety, asthma, allergies, sensory processing disorder and other issues could be detected in the womb, would these babies also be in danger of being killed before getting a shot at life?

Can you imagine what we as Americans would say if a parent killed their two-year-old child because they were just diagnosed with autism? Or their two-day old baby who was found to have hypoplastic left heart syndrome? We would cry out for justice. We would demand that the parent who just killed their child be sentenced to prison. We would hate that parent and be completely befuddled by their actions. "How could a parent kill their own child," we would ask.

Most Americans in this day and age recognize that it is wrong and even unlawful to discriminate against people with disabilities. Did you hear the story of the young boy with Down Syndrome who was at a restaurant with his family and a customer at another table was saying mean things about the little boy? The waiter refused to wait on that customer because of his derogatory remarks towards the little boy. The waiter was hailed a hero for his actions.

How can this be, I wonder? That it is heroic to stand up for a child with special needs when they are out of the womb but it is perfectly acceptable to kill a special needs baby in the womb?

I know it is because people think a woman has a right to do so because it is her body. But it is also because of this type of mentality:

"I had CVS done with both my children. It was the most horrifying procedure I have ever undergone, and I am thankful beyond belief that each time the test revealed a healthy child. But there is no doubt in my mind that, had the test revealed otherwise, it would have been my duty as a parent to terminate the pregnancy and I would have done so immediately."

This mother of two said it would be "her duty as a parent to terminate the pregnancy" had the baby been found to have some sort of abnormality. Funny because I thought that the duty of a parent was to protect the life of their baby at all costs. And that's why we have the mentality we have in society today. It is no longer our duty to protect our children, instead it has become our duty to have the least complicated, most pain-free lives possible - a life that ensures the highest quality of living. We have become the judges who determine which lives are deemed worthy of living.

But here in North Dakota, we along with our legislators and our governor have taken a stand for life. A stand that includes protecting the most vulnerable of vulnerable - babies in the womb with disabilities and genetic abnormalities. I am thankful that our lawmakers have realized that discrimination can and does start in the womb and that we are putting a stop to that. It's just another great reason to be proud of North Dakota!
Sunset in Western North Dakota
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Monday, March 18, 2013

Faith's First Anat Baniel Lessons

To someone who might not know Faith well, or to the stranger observing Faith, her movements probably seem pretty abnormal. Her tone kicks in and her muscles tighten, not allowing her to move or relax. Every once in a while, she throws her arms up in the air for no apparent reason. When she's tired, her head hangs to the side and she can barely keep it up, even while sitting supported in her chair. But to me, this is Faith and this is how she has moved for most of her life.

She has spastic motions that are anything but graceful. While sitting with me, her hand will shoot up and slap me in the face. There is no reason - no purpose for some of her movements - that is all she and her parents have known. We are in a constant battle with her high muscle tone. Sometimes she tightens up so stiffly we can barely pick her up. This is how it has been for her nine years of life. This is normal for us.

This week I learned life does not have to be this way. This week I've seen Faith move in ways I never thought possible for her, barring a miraculous healing. It was amazing to see Faith push her feet in her footrests to help scoot her behind to the right place in her chair. It was amazing to see Faith "find the middle" of her chair and to sit up in a straightened position all on her own - even without the support of the laterals on her chair. She was excited too and repeated, "I did it! I did it!"

It has been an eye-opening week for me, to say the least. I've come to realize that keeping her strapped and restrained tightly in her chair has not allowed her to explore ways for her to achieve purposeful movement. Her movement has always been so random and so disorganized, but through the Anat Banal Method, both Faith and I learned that there are ways to help her organize and move her body that are beneficial to her. In doing so, her brain can actually form new neural connections.

I know it all sounds so abstract and it is hard to even put down into words. So instead of using words, I'll share some photos that I took while Faith was working with Pati Holman, who comes to Bismarck from Milwaukee, WI.
This was actually day 2 of meeting Pati. The first day I just wanted to listen and take it all in so I didn't take any photos. Faith was a little nervous to get on the table on the first day and although she was still nervous on day 2, she quickly got over it. She and Pati had a great connection and I know Faith completely trusts her.
Pati helps Faith move on to her side. When Faith rolls onto her side, her body is usually very disorganized and she uses her legs, arms and her head to try to get herself onto her side. Pati repeatedly and very slowly rolled Faith onto her left side then her right and eventually Faith could do it without her whole body flailing in all directions.
Slow movements are essential in getting Faith to relax and help her feel and pay attention to how her body moves
Faith in a sitting position toward the end of the lesson - see how relaxed her legs are! Usually when she's in a sitting position, her lets shoot straight out.
Faith's third lesson - "Oh yeah, I know this lady! She's pretty nice but she's serious business too!"
Pati trying to help Faith figure out what is best for her in a sitting position.
Going from sitting to lying on her back.
Pati takes hold of Faith's arm to help her go from her back to a side position in the gentlest way possible, keeping her whole body as organized as she can.
Faith is totally relaxed and she finds something to play with.
Back to sitting. Pati has Faith putting her cheek on one knee then she helped Faith put her other leg up to do the same. This helps Faith to know that she has a right leg and a left leg and that they can function separately from one another. This is helping Faith to bring attention to her movement which is important for the brain in creating new connections.
That's it! That was our first four Anat Baniel Lessons. Both Robert and I feel this was a very positive experience for Faith we are looking forward to learning more!