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.

Tuesday, April 23, 2013

Waiting for Spring

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 melted but there are still mounds of snow wherever you go.

Every morning, I look at the temperature and every morning I am somewhat disheartened. This morning it was only 18 degrees (that's Fahrenheit for my Canadian family and friends!) Rob is still getting up to start the van and scrape off the windshield. I am still wearing my winter coat and we are still bundling Faith up to go outside. I know I shouldn't complain but I am really, really looking forward to warmer weather! Rumor has it, the temperature is supposed to reach 80 degrees this weekend - I will not believe it until I see it!
Faith's schoolyard one week after our big blizzard
All this waiting for spring has got me thinking though. Sometimes we go through seasons in life that are more difficult than others. We start getting impatient and we find we are complaining more than usual - all we want is for our next season to come. Challenging seasons in life are not something that even we as Christians can escape. The Bible promises us there will be trials and tribulations. But the Bible also promises something else - that God will be with us every step of the way, he will never leave us nor forsake us. He will also never waste the hard times that we go through - He promises to use them for our good.

We will find that after making it through our dark season we will find the light that has been awaiting on the other side. All we have to do is keep pressing on, keep moving forward, keep praying and having others pray for us. Then the next time another tough season comes along, we will have an even stronger confidence that we will make it through this one too.

So it is with winter and spring. Soon winter will be behind us and there will be lots of bright, warm, sunny days ahead. Winter will eventually come around again but it is wonderful to know there is always the promise of spring!
A sign of Spring!

Sunday, April 14, 2013

The Perfect Church Service for Faith

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". It has been because of Faith’s special needs and hypersensitivity to loudness that we have searched and searched for a church service that she would be able to tolerate and feel comfortable. 
Faith with Pastor Marc at New Life's Redefinition Cafe Service
In our search for a church, we have gone to many wonderful services in Bismarck and Mandan – including all different denominations such as Lutheran, Catholic, Four Square Gospel, Methodist, and several nondenominational churches. We experienced something positive in each church but none of them seemed like the perfect fit for all three of us. And more times than not, attending church at these services often required sitting way in the back, where it wasn’t so loud and sometimes even sitting in the fellowship hall while watching the service on a big-screen TV. It wasn’t exactly the type of fellowship I personally was looking for.

Finally, last spring some friends of ours invited us to NewLife’s redefinition café service which took place in their office building not far from our home. They assured us the worship music was not very loud and that it was a quiet little service that might work well for Faith. 
New Life's redefinition service - praise and worship
They were right. It is not loud at all. It is perfect. The praise and worship team is often a one-man band with either someone on the piano or someone playing the guitar leading the worship. Instead of being tense, Faith is more relaxed and comfortable with the quieter music and she can now actually enjoy it. Another bonus for her is that there is no microphone required for the little group of people that come to this service. The pastor’s message is conversational and even invites participation. Sometimes there are guest speakers who share their knowledge and gifts on evangelism, healing, art and other topics.

In going to the redefinition service, we have reconnected with some friends from our past and have made new friends as well. At one time, they had a children's service which Faith started going to along with the three or four other kids who came to the service. What makes redefinition cafe at New Life even more perfect – especially for Rob – is they offer coffee (with creamer) and baked goods. What more could we ask for?
Faith makes friends wherever she goes
Since first attending the redefinition service, it has evolved and changed somewhat. The time has changed to take place earlier in the morning and it has even more of a “café” feel to it as we sit at tables instead of rows of chairs. (This makes it easier to enjoy our coffee and goodies!) The worship is the same – just one or two people leading worship – no sound system, just a guitar and amazing music. Unfortunately they don't have the children's service anymore but Faith is just as content to stay with her mom and dad and listen to the message. 

Besides the redefinition cafe service, there is a celebration service later in the morning up north in a larger building. This service includes all of the excitement of a charismatic church service – which I totally love but is a little too much for Faith. It is my hope and desire for all three of us to attend both church services but until that day, we are happy with the redefinition service and feel it is the perfect fit for our little family.
Faith and her dad looking over some church notes


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
Other Posts You Might Like: 

Sarah Palin's Letter from God

You are Who You are for a Reason

Some Mothers Get Babies with Something More

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!

Monday, March 11, 2013

Brain Awareness Week and the Anat Baniel Method

Did you know that this week is Brain Awareness Week? I find it interesting that this is the week Faith will be introduced to an Anat Baniel practitioner and taking her first Anat Baniel Method (ABM) lessons during this week in particular.

The ABM practitioner we are seeing is coming here from Milwaukee, Wisconsin. Rob met her in January during a workshop about ABM. Through another mom of a little boy with cerebral palsy, we learned the practitioner is coming back to Bismarck so we decided to schedule Faith for some lessons (they call them lessons, not therapy sessions). The mom I talked to recommended getting the book, "Kids Beyond Limits" by Anat Baniel before the lessons started and I am glad I did!

Through working with Moshe Feldenkrais, Anat Baniel has developed her own method of working with kids with special needs. For the past thirty years, she has worked with kids who have cerebral palsy, autism, ADHD, undiagnosed developmental delays and any other type of special need caused by a dysfunction of the brain. She is originally from Israel but currently works out of her center in San Rafael, California.

The book is helping me to learn more about the Anat Baniel Method, and I must say I am really excited to see how this can help Faith. We seem to be at a standstill with her traditional therapy and it is a little disappointing because I feel Faith is capable of so much more! I also know though, that I can't put all of my hope in this alternative therapy but we know we can't not try it either, especially since we have a practitioner coming here to Bismarck! (Most of the ABM practitioners work in large cities throughout the country).

The whole basis of ABM makes so much sense. While traditional therapy tends to focus on doing repetitive movements, exercises and botox injections to help relax the muscles, ABM gets to the root of the issue - the damaged parts of the brain that cause the muscles to have high tone. The focus is all on the brain and the goal is to find ways to help the brain reorganize itself by forming new neural connections. Anat Baniel writes "today we know that the brain can change itself. It is the part of us that is, in fact, most capable of change." How exactly do you get the brain to change and to form new neural connections? Well, I still have a lot to learn but between meeting and working with an ABM practitioner and reading the book, Kids Beyond Limits, I hope we can gain insight that will help Faith.

I can't wait to share with you how are lessons went - we have four scheduled this week. I'll try to take some photos too and share those as well. What about you - are you a special needs parent who has tried ABM with your child? What were your experiences, good or bad? I would love to hear from you! Happy Brain Awareness Week!