Monthly Archives: October 2013

A Thankful Daddy who’s High on Downs

The more I read about parents who were informed that their child was diagnosed with downs syndrome, the more I read about fathers who were initially very disappointed and upset. I am thankful that this was not my experience with David. I do not say this because I look down on others who struggle, or because I think that there is something intrinsically better about me than someone else. I say this, because I am aware of the fact that thoughts are not created in a vacuum, they are produced within a context. I might restate my previous statement this way: I am thankful for the providential context that God graciously gave me, that allowed me to be excited, from the very beginning, about receiving a child from God, with DS.

David is the first person with DS that I have ever personally known (as far as I can recall). However, from a child, the love and acceptance of special needs children has been  my “normal”.  My mom was the first influence that God used to cultivate this in me. When we were young, she was a substitute teacher for a while. She was so good with the special ed. students, that eventually she was almost a full time special ed. sub. While I never met any of her students, her love for them and acceptance of them had a profound impact on the way I viewed special needs children. Through the years God has brought many “special needs” children into my life.  But outside of David, there is one that stands above the rest.

I met Jake in 2007 when I began teaching at East Union. I was a choir director who was reviving a music program and moving full speed ahead. My goal was to take a struggling choir program and turn it into a thriving, award winning group. After my first two years I felt that we were well on our way. In 2009, Jake joined chorus. I had no idea what to do with this guy who was so excited about singing that he drowned out the rest of the group with his happy, yet off key, voice. One day as a fluke, I asked Jake if he wanted to help me conduct. This eventually led to him becoming my co-conductor. Through the next two years, I grew to have a real love for Jake. He brought a lot of meaningful moments to the choir, and forced me to change my focus. I could tell you many stories (like being slapped in the face by Jakes conducting during a contest) but it would take too long. I was sad the day Jake graduated, and hoped that someone would come along to fill the special place that he had carved out in my heart.

Well,… that someone happens to be my son. You see, my excitement or lack of disappointment had nothing to do with me, but everything to do with my previous experiences with special needs children. How could I be disappointed, when I had seen and experienced the goodness of God in the lives of these individuals? While this daddy is high on downs, I also have to say that I absolutely LOVE the life that God has given me; not because it’s perfect, but because it’s good.

Some people might think that I am delusional or looking at life through rose colored glasses. I can assure you that I do not live in La La land; those who know me best, know that I do not sugar coat life. I will tell you where I do live, I live inside the reality that every good and perfect gift comes down from a loving Father. My son is one of those gifts. I do not feel sorry for David, and I certainly don’t feel sorry for myself. I’m not just high on downs, I’m high on sweet pea too. I am grateful for my entire family. Thankfulness has nothing to do with what you have; but with who you think has given you the things you currently possess.

-Louis

3 on the 21st

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Before David was born I wasn’t a blog reader. Honestly, I would often wonder…where do these people find the time to blog? Then David was born, and we were making so many phone calls and sending so many emails we decided to create a blog. Louis did most of the blogging in the beginning. After we came home from the hospital there continued to be an interest in David, so I kept writing.

Since David’s birth I have entered and enjoyed the blogging world. I follow several DS blogs. These families, children, siblings, fathers, mothers have become a source of strength, inspiration and sometimes comfort.

I’m trying to participate in a blog hop. You have to copy codes and post links…something I know nothing about, so it might take me a few times of posting to get it right. Meriah over at withalittlemoxie.com began “3 on the 21st” to help create a community for Down syndrome parents, readers, and bloggers. On the 21st of each month (since DS is caused by a split in the 21st chromosome) you can participate in a blog hop. This month since it’s Down Syndrome awareness month she has asked us to share our 3 favorite DS bloggers.

MY FAVORITE DS BLOGS:

http://www.kellehampton.com/  – this was one of the first blogs I stumbled upon after David was born. Please take the time to read Nella’s birth story and watch the clip from Kelle Hampton’s book – Bloom (both can be found on the right hand side of her home page).

http://bakerisourdreamcometrue.blogspot.com/ – this little boy will take your heart and you will smile when you see him. I read this mama’s post and know our future with David is going to be a bright and happy one.  Jennifer is honest, real, has a deep faith in God, an inspiring mother’s heart, a desire to be a Godly wife. I encourage you to stop by and read her blog.

http://confessionsofthechromosomallyenhanced.blogspot.com/ – This blogger grew up with an older sister who had DS. She and her husband adopted, Josie, who has DS. This blog literally makes me laugh out loud.

click on the link below if you are interested in the blog hop

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Our First Buddy Walk

When the geneticists diagnosed David with Down syndrome she told us she saw two types of responses when families learned of their child’s disabilities. She saw families who buried their heads in the sand and pretended their child didn’t have DS, or she saw families who embraced the new life and became involved in therapies, activities, and other avenues that would help their child become successful. We want to be the second type of family. This is the family God has blessed us with. Louis and I want our lives, our home, our family to reflect His love and goodness to us, so we joyfully embrace our journey.

What’s a Buddy Walk? Buddy Walks began in 1995 to promote acceptance and inclusion of individuals with DS. These walks take place all over the world during the month of October – this year there over 250 organized walks. Buddy Walks are fundraising events for DS awareness where there is food, fun for the kids, concerts, face painting, auctions and a variety of other activities. The actual walk is just that – “A Buddy Walk.” You buddy up and support someone with Down Syndrome and you walk.

I wanted to have team t-shirts, so our good and talented friend, Barry, designed them. They were perfect! Here are some photos of our day.

Claude Ewing (Pop) and David Ewing

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Lily and Nora’s shirt didn’t come in, so we made them one.

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My sister-in-law, Heather and our one nephew, Abraham ( it was nap time). Heather has been incredibly kind and supportive. We appreciate her sweet spirit. I know David and Abraham will be best buddies.

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We don’t do anything without MoMo. The kids love their MoMo.

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We appreciate everyone who came to support David and our family. We know there will be challenges ahead – challenges we won’t face without friends and family, but the picture below is our family’s sentiment toward David.

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“SUNSHINE OF OUR LIVES”

An Update and Another Great Video

Good morning! I’m working on a post about our first Buddy Walk, but it literally takes me days to complete a post. The kids keep me very busy. Until I can find the time to complete the post, I wanted to give an update on David, and post another great video.

I have been made overwhelming thankful the last 2 weeks for David’s progress. When Lily was a baby we would become excited about her new discoveries, but with David each new discovery is a victory – a victory that is harder won and enthusiastically celebrated. David is now able to control his head movements with little wobbling, and his core is becoming stronger. He is interested in pulling (with help) into a sitting position, and he is now putting weight on his legs when we hold him in a standing position. We do alot of tummy time to strengthen his core. Our next big goal is sitting up. He is eating from a spoon like a champ. This boy LOVES to eat. Sometimes when I am feeding him, I think about the crying NICU mama who literally tried everything to get this baby to finish an ounce of milk. He now guzzles 7 ounces when fed from a bottle, and eats cereal / baby food twice a day. We saw our pediatrician 2 weeks ago, and David received a good report. He has gained 3 pounds since surgery. His oxygen was 100% – WOOHOO! At the end of this month he will begin a 7 shot regiment that will be given once a month. Research shows that heart babies are especially susceptible to RSV, so from October through April (RSV season) David will receive Synagis. Synagis will help protect him from RSV. I want to praise the Lord for our insurance – each shot is $2500. We have met our deductible, so we will pay nothing for the shots. I am praying the Lord will bless us with a healthy winter. If you think about David please pray with me.

Here is the video. It’s the story of a father and his acceptance of his daughter who was born with Down Syndrome. All you runners will love this…

http://www.youtube.com/watch?v=Q4foXehDmWs