A Mother

Last night I led a confirmation orientation meeting for all the youth of our parish who will be confirmed in the spring. I explained to them that during these next few months they will need to read about the lives of saints to help them choose one who they would like to imitate, whose name they will take at their confirmation mass. When I was confirmed over ten years ago in 1997, I knew immediately which saint I wanted to choose. There was only one saint whose life truly spoke to me, only one saint whose life I wanted to imitate, only one saint who I felt a special affinity to my entire life: Mary, the Mother of Jesus.

Her life was filled with holiness. She said yes to God. She was chosen to bear God's only son here on Earth to save us all from our sins. She was an amazing woman. Hers is a beautiful love story. She lived a life of sacrifice and love and did just as God asked her to fulfill his divine plan. But her life was also like something you would see in a modern-day movie: she was only around fourteen years-old when she conceived the son of God and she was not married at the time, she quietly married her fiancee to avoid scandal, she gave birth in a stable, she had to flee her hometown because a vengeful king wanted to murder her infant son, she lived a quiet life until her son was thirty-three and was sentenced to die on a cross for committing no crime, she followed him as he carried his cross to Calvary and was with him when he died. She never left his side. She never doubted that God's plan was suppose to happen, even if it meant that her only son had to die.

There are many things about her life that I draw strength from. I do not think I chose her as my confirmation saint by chance. I think the Holy Spirit knew that I would have to draw on her strength and courage throughout my life and guided me to her. There have been many times in my life that I have prayed for her intercession to help guide me, to give me peace, to lead me through trials, to be with me as I carried my cross. She has always been there. I have always felt her spiritual presence in my life.

People of various faiths do not always understand Catholics affinity to Mary. They believe that we worship her. That we replace her for God or her son, Jesus Christ. This is simply not so. We do not worship her, nor do we put her above her son. We honor her as the mother of God. We give honor to her the same way we honor our own mothers here on Earth. I remember as a child it was always much easier to ask my mom for something than my dad. Sometimes I feel this way when I pray. I feel that Mary speaks to her son in only the way a mother can, and asks for him to keep us close, to forgive our faults, and to spare us from evil.

September 8th was the Nativity of the Blessed Virgin Mary in the Catholic church. May 1st is the Crowning of Mary. I do not think it is a coincidence that both of our children are born in these months. Someone once told me that children are waiting for us in Heaven and that when they find their parents, they join us on Earth. I know that the Virgin Mary helped guide our children to us. When I was first pregnant with Ella, I spent many hours in front of the statue of Mary at our church asking her to intercede for us and bless us with a child free of SMA. I know that the Queen of Heaven is always near me, always leading me closer to Jesus, helping me to carry my cross as we raise our terminally ill son.

"Love Mary! She is loveable, faithful, constant. She will never let herself be outdone in love, but will ever remain supreme. If you are in danger, she will hasten to free you. If you are troubled, she will console you. If you are sick, she will bring you relief. If you are in need, she will help you. She does not look to see what kind of person you have been. She simply comes to a heart that wants to love her. She comes quickly and opens her merciful heart to you, embraces you and consoles and serves you. She will even be at hand to accompany you on the trip to eternity." -St. Gabriel of the Sorrowful Mother

Life Plans

I came across this quote a few days ago and have been thinking about its significance for my life. When I was a young woman I thought I had my life all planned out: I wanted to be married and have children in my mid-twenties, I wanted to have a degree in education and teach in a public elementary school when I finished college, I wanted to live for a few years in an apartment in a big city and have that urban experience that I didn't have growing up in a small town. I wanted to travel. I wanted to meet interesting people, with whom I could debate philosophy, religion, and politics. My nineteen-year-old self believed she had the world at her fingertips and couldn't wait to enjoy all it had to offer.

Many of my hopes and dreams did come to fruition. I recieved my undergraduate degree in education and eventaully pursued my masters degree in education as well. I taught in an elementary school for five years before having children. I traveled to Italy, The Virgin Islands, Canada, Mexico, and various places in the United States. I have had the pleasure of meeting many interesting people along the way and have engaged in some thought-provoking conversations. These experiences helped shape the person I am today, although I believe the experiences that I did not plan, the things that happened that I had no control over have helped me learn more about myself than I ever thought possible.

Part of my life plan was fulfilled when I got married at age twenty-three. My desire to be married and have a family blurred my vision of love when it came to my ex-husband. Our marriage lasted exactly thirteen months because I mistakenly married a former college fraternity boy who lived out his alcoholism at the local bars and eventually brought violence and infidelity into our marriage. At the time this broken marriage was devastating to me. My dream of being married and having a family was shattered. I was sure that I would live my life alone with no one to love me, with no hope of family in my future. It was only after a month-long vacation in California with my best friend and her constant support and reassurance that I began to realize that while my impending divorce was going to be a difficult cross to bear, life would go on and I was capable of finding happiness again. Little did I know that several months later I would meet my current husband, Jeff, who has been my rock and salvation. He is my heart, my passion, my everything. Because my heart had been trampled at the end of my first marriage, I had to learn how to pick myself up off the floor, dust myself off, and open my heart again. God sent me my soul mate when Jeff and I crossed paths. Had I not suffered such complete devestation and been so slighted in love, I don't know that I would have been able to see what amazing qualities Jeff has in his quiet, unassuming way. He captured my heart and soul and I have never looked back.

Years after my divorce, I thought I was in the clear. I believed that my life path had taken a slight detour and was now back on track. I had found a wonderful man to spend my life with and we were expecting our first child. All was right with the world. I had even made a career change from teaching full-time to teaching part-time to provide me with lots of time with our new baby. When Nicholas was born, I finally had the family that I had hoped and dreamed of. I was elated to finally to be a mother, and to be able to share all the parenting roles and responsibilities with Jeff was icing on the cake. I finally had my perfect family. But when Nicholas was ten months-old, he was diagnosed with Spinal Muscular Atrophy and again my hopes and dreams were shattered. I felt as if my heart had been ripped from my chest, thrown on the floor, and stomped to pieces. I felt as if I had done something wrong. I screamed at God for punishing me again. I cried, I pleaded, I anguished. This time as much as it was happening to me, it was physically affecting my son, and that was a pain that was almost too much to bear.

Now six years after my divorce and two and a half years after Nicholas's diagnosis, I have the perspective to realize that life doesn't always happen the way I expect it to, but that what I learn about myself along the way, helps me to grow stronger and open myself up to new possibilities...whatever they might be. I have a much different view of my life's path. I no longer feel in complete control of my destiny. I have let go of expectations. I have surrendered my heart and soul to God's grace and I know that whatever happens in this journey is what is meant to be. It's an amazing feeling. It's a feeling of complete surrender, it's freeing and liberating. I honestly don't ever want to go back. For me to not know my destiny, to not have my life follow a plan, lets me live each day with fervor and love and helps me take experiences as they come without the blur of expectations of what is suppose to be. Whatever will be, will be. I am just here to live the best life I can, to give as much love as I have in me, and to experience joy each and everyday.

The End of SMA Awareness Month

Today is August 31st which marks the end of SMA Awareness month, but for us and many families like ours, SMA awareness doesn't just take place during one month in the year. Unfortunately, for us, SMA is a part of our daily lives and always will be. I hope that all of our readers learned a little more about Spinal Muscular Atrophy this month and how you can help spread awareness about the disease that robs children of the simple joys in life-the ability to move, breathe, and speak.

If you would like to donate to any of our favorite SMA charities to help fund a treatment and/or cure, please check out these wonderful sites:

http://www.gwendolynstrong.com/

http://www.fsma.org/

http://www.sophiascure.org/

A Little Bit About Nicholas...

Our sweet three-year-old has been doing so well in the past few months and we are so happy! He saw his pulmonologist last Thursday and we were surprised and happy to learn that he know weighs 29 pounds which finally puts him on the weight chart in the tenth percentile. It is such a relief to know that his amino acid diet is working so well for his little body. We are also working with his pulmonologist to try to get Nicholas some portable oxygen for those emergency situations where oxygen is necessary.

Nicholas's new school district was so generous in purchasing a universal arm for his iPad earlier this summer and he loves watching PBS kids and Netflix shows on it.

Also a few weeks ago Nicholas received a beautiful dinosaur blanket from B4SMA, which is a blanket charity started by two women, MJ Purk (who is living with SMA and who is featured on an earlier post) and Brenda Hanson (who is MJ's caregiver and good friend). He loves his blanket and the cute stuffed frog and other toys that came in the package. Thank you MJ & Brenda for thinking of our little boy!

Nicholas's school year starts tomorrow! I cannot believe our son is old enough to attend preschool already. He will be participating in his class for circle time and free time via web cam and we will be doing all of the classroom learning activities together at home. I am gearing up for a school year of letters, painting, numbers, literature, and fun!

Ella's First Boating Adventure

Today was my first trip on my family's boat. I had a great time on the water and was happy to play in the sunshine, but I missed my brother who was home with our Gramme.

Mom, seriously, do I have to wear this thing the whole time? It's kind of uncomfortable.I sure do love snuggles with my Aunt Tina Oh, boy, I can't wait to watch Daddy wakeboard!He didn't disappoint me...he did all kinds of crazy tricks on that board...My Uncle Eric and Aunt Jami grew up on the water and they both love it as much as I do.After Daddy wakeboarded, I got to watch my Uncle Eric...Then Uncle Eric let me try on his wakeboard boot, but I think it was too big.Later we took the boat to the shore and I loved swimming in the water and playing with the sand.I may look like I am all by myself, but don't worry...I had a bunch of guys looking out for me.Then I got into the boat with my Mommy and changed out of my swimsuit and played with my Sofie.What a fun day!

Sean Wheeler

Sean's mom, Jessica, and I recently connected on facebook. The Wheelers don't live too far away from us, so we hope that we will be able to meet them someday soon. Here is what Jessica wrote about her handsome son...

Sean was born April 17, 1998. He was the healthy baby that I had prayed every night for. At three days old he rolled over in his incubator in the nursery and the nurses told us that we would have to watch him closely because he was a “strong one.” Things changed so slowly, that for months we didn’t notice that anything was changing. At about nine months I began to worry. Sean didn’t crawl and while he could stay sitting up, he couldn’t get into that position by himself. We took him to the doctor and she said that he had low muscle tone, but he really wasn’t that far behind. She told us that they worry more if babies are losing abilities. I went home and watched a video of Sean that had been taken over about six months time. You could see that in the earlier videos he was moving his legs, but in the later videos he was not.

Our lives changed forever the night before Sean’s first birthday. Sean had been to the doctor for a check up and I told her about how his hands shook when he was really upset. When she witnessed this for herself and he still wouldn’t put weight on his legs she said it was time to start running tests. That night I couldn’t get muscular dystrophy out of my mind. I looked it up online and read about all the different types. I was feeling really good, none of them sounded like Sean. Then I got to the last on the list, Spinal Muscular Atrophy. They happened to describe type 2’s in detail. As I read my heart sank, and when I read about hand tremors I just knew. I even thought to myself that I would remember that moment for my whole life.

We had a big party for his first birthday the next day, but there was a dark cloud hanging over us all. The next Tuesday I called the doctor to ask her about SMA and she said that Sean couldn’t have it because he wasn’t weak enough. So we ran test after test. They all came back negative. At 14 and half months old I asked about SMA again. The doctor said that he couldn’t have it because he had reflexes, but when she went to show me they were gone. Between his one-year check and 14 months he had lost them. She said, “OK, we’ll run the test.” I remember sitting in her office two weeks later when she came in and said those dreaded words, “I just got off the phone with the lab, the test was positive.”

We are very fortunate to have an incredible pediatrician who does everything she can for Sean. She never told us to take him home and love him; she does everything she can to make sure that Sean’s life is full and as healthy as can be. Sean is now 13. I was filling out a medical form one day and one of the questions was “is he healthy?” My answer: “definitely healthy."

To learn more about Sean, please visit his website: www.caringbridge.org/visit/seanw

MJ Queen

Here is a 23 year-old woman who is living with Spinal Muscular Atrophy. She is a true inspiration to me and many people in the SMA community. She has a blanket charity and recently sent Nicholas a beautiful dinosaur blanket that he loves!I’m Margaret but most people call me MJ. I’m 23 years old and I have Spinal Muscular Atrophy or SMA type 1+. My type of SMA is kind of subjective but basically it means that I don’t strength wise, fit nicely into a set criterion for type 1 or type 2. I’m stronger than most type 1s and have maintained the ability to sit up with support and am able to swallow solid foods. I was diagnosed with SMA when I was 6 months old but my paternal grandparents knew something was wrong with me around 3 months of age. My younger sister, Emma, also had SMA but lost her battle with SMA in March of 1992. SMA has been the cause of a great many of my triumphs and failures. I have been in the hospital for many months in the last two years but I still enjoy life. In the past year, I have had several surgeries and several complications. I have learned a great deal about myself and the medical profession through these experiences and it has made me a much stronger person.

While SMA is a major part of who I am, it is not my entire world. For the most part, I am your average 23 year old. I recently finished my undergraduate degree in Rehabilitation Services at Wright State University in Dayton, Ohio. I have a lot friends whom I love spending time with as often as possible. I have a very large family and we are, for the most part, very close. I enjoy volunteering for various organizations in the SMA community. I am the president of my own organization, B4SMA – Blankets for SMA kids, that makes and sends blankets to children (up to age 18) from around the world with SMA. I also design websites for Our SMA Angels – an organization dedicated to providing websites to families of children and angels with SMA. I enjoy designing T-shirts and making videos in my free time. I love to travel and have been to several states. One of my favorite yearly vacations is camping with friends on the ocean in Connecticut.

It has been an incredible journey over the last 23 years. I know that SMA has had a huge impact on my life as whole. I’m thankful for the people that I have met because of SMA. While I wish that I didn’t have to know the world of SMA and the people in it, I’m grateful for all of the experiences that I have had because of it. I love life and enjoy every minute!Visit the following websites to learn more about me and my life:

www.our-sma-angels.com/Margaret

www.our-sma-angels.com/b4sma

www.our-sma-angels.com/emmabear

www.zazzle.com/b4sma_kids

http://tinyurl.com/b4sma-productions

One Year Later

What a difference a year makes! In August of last year Nicholas spent 15 days at Doernbecher Children's Hospital. He was admitted on August 11th and stayed until August 25th. He had been losing weight and was only 17 pounds when he went in because he refused to eat much of anything by mouth anymore. The night before his hospital stay, I was bawling as I gave him a bath because he had become so small and frail and he didn't have an appointment to see a feeding clinic specialist until the end of September. I felt absolutely helpless which is the worst feeling for a mother. The next morning, I took him to his pediatrician who promised us that before we left his clinic, he would get Nicholas into a hospital to get him the attention that he desperately needed. During that fifteen day stay at Doernbecher he had his g-tube surgery and was finally given a bi-pap for sleeping.

Just looking at his skinny little self in these photos makes my heart break. He has such a strong, fighting spirit in him and you can see even though he was emaciated and not doing well respiratory wise, he still managed to smile and keep his spirits up.Now one year later, Nicholas has gained approximately twelve pounds and is much healthier because of his g-tube and sufficient nutrition. He now has fat on his body where he used to be just skin and bones and it is so nice to see his--dare I say--"chubby" thighs and biceps. He also gets good quality sleep because of the support of his bi-pap when he is sleeping which helps him to have more energy during the day.

I cannot even begin to explain how life changing that hospital stay was for Nicholas and his health. The doctors and nurses taught us so much about his neuromuscular disease and how to use his new ventilator and feeding tube. I am so grateful that he has such an amazing pediatrician who is willing to be an advocate for Nicholas and his many health care needs. Most of all, I am so grateful that we still have our sweet boy here with us to give us so much joy and love each and every day. Nicholas is a blessing straight from Heaven and being his mother is one of the best gifts I have ever been given.

Keep on fighting, Nicholas! WE LOVE YOU, BUDDY!

Alexander Davis

Alexander is a handsome boy who doesn't let SMA hold him back! His family went to the annual SMA conference in California last year and they also had a wheelchair ramp added to the entryway of their home to make getting out and about in a power chair much easier. We love to read the Davis's blog and know that Alexander and Nicholas would be great friends if we lived closer to one another and could get together for play dates. Here is Alexander's story as told by his mom, Anastasia:

Alexander William Davis was born on March 31, 2008. He was sent home healthy and happy! Alexander was doing great until about 9 months old, when he started falling behind developmentally. After seeing a Neurologist and running many tests, he was diagnosed with SMA Type 2 on June 11, 2009. Alexander began using a power chair at 16 months, and received his own on December 30, 2009. He absolutely LOVES driving his wheelchair, and has spent the whole summer perfecting his driving. He loves the little bit of independence it gives him. Since Alexander’s diagnosis, he has continued Occupational, Physical, and Speech Therapy. He had a g-tube placed in February 2011, and has recently started using the Vest therapy system, twice a day, to help keep his lungs as strong as possible. He spends a lot of time at doctor appointments and therapy appointments, but we make sure he has every opportunity possible to be a fun and happy 3 year old.

Alexander has a ton of determination, and amazes us every day with his inner strength. He is probably one of the happiest and funniest 3 year old boys you could ever meet. He loves to make people laugh and smile, and when he is around there is never a dull moment. Alexander loves basketball, trains, cars, blocks, and motorcycles! One of his favorite toys is his iPad. He recently started going to Preschool and loves playing with all the other kiddos, and he will remain in school as long as his health is not affected. We are so proud of our lil man, and he shows us every day how to fight and be strong. We love you Alexander, and will fight every day for you.

Happy Anniversary Mom & Dad

Happy 34th wedding anniversary to my wonderful parents!

You have both taught us so much about love, kindness, selflessness, and compassion. Your marriage is a shining example of what I would like ours to look like in 34 years.

We all love you so very much and wish you a very happy anniversary!