Monthly Archives: November 2013

A Family to Be Thankful For

In the Spirit of Thanksgiving, I would like to give thanks for the wonderful family that God, in His loving kindness, has given me. We are not a perfect group of folks, but four individuals learning to see God’s grace through daily interacting with the imperfections of one another. I enjoy everyday that I am able to spend with my family. That doesn’t mean that every day is easy, but it does mean that a day does not pass by in which I am able to share an enjoyable moment with my wife and children.

Lily is my silly little sweet pea. We laugh and act ridiculously goofy together. Her little sense of humor is one of the highlights of my day. She is also a little snuggler. We like to cuddle up and watch a show or read a Bible story before bed time. I treasure these times and am very thankful for them.

David is my little smiley faced sunshine man. We enjoy cuddling up and chatting or eating. He is a laid back fella, and I love being his daddy.

Abigail is my sweet, kind, beautiful, work horse, wife. She makes sure that everything is going the way it should be. She is very diligent with David’s therapy as well as the rest of his everyday medicine and care. She is a wonderful, patient mother to our daughter, who takes the time and effort to teach Lily how to bake and help out with everyday cooking and activities. She is my best friend. We laugh together, and huff and puff together at times too. We have a wonderful relationship for which I am very thankful.

-Louis

Every Good Gift

“Every good gift and every perfect gift is from above, and cometh down from the Father of lights, in whom is no variableness, neither shadow of turning.” James 1:17

My first post on this blog, “All is Grace,” was written while I was sitting in the cafeteria at  LeBonheur hospital. David had been taken for a biopsy to test for Hirspreung’s Disease. He was only 5 days old, and I was a mess. A crying, fatigued, emotional mess. In that post I wrote about a book I had read and re-read shortly before David was born (and have read again since his birth). In One Thousand Gifts the author Ann Voskamp challenges her readers to count the gifts God gives us – count them one by one all the way to one thousand. This time last year I began the challenge. I started listing God’s gifts. I started this challenge for several reasons, but honestly I started this challenge because the author of this book struggles with worry and anxiety, and so do I. It’s a sin I fight every day. Somewhere in the book she says something like – you can’t be thankful and worry at the same. She’s right. This is a practical way I battle my worry. I count. I count His gifts and they are many. When I began counting I thought it would be easy to reach one thousand, but once you get past your usual surface thankfuls it becomes more difficult. You have to look closer, but when you do, you get a glimpse of God’s love towards us in all His gifts.

While we were in LeBonheur I kept counting. I would write His gifts on napkins, receipts, scraps of paper and then stuff them in a book. I recently took the time to sit down and add them to my list. I want to say, “THAT GOD IS GOOD! ALL THE TIME!”  David’s birth, through our time in the hospital, through 2 major surgeries, through trials I never thought I would be able to face, through the last seven months, and YES, through a Down syndrome diagnosis – GOD IS GOOD! ALL THE TIME! I recently had a conversation with a friend, and I was able to tell her in all honesty that David is perfect for me. I’m easily discouraged, overwhelmed easily, battle anxiety, worry, and a melancholy spirit, and this little boy with Down syndrome is a gift I never expected to add to my list, but he’s there. He’s an unexpected gift I didn’t know I needed. “Every good gift and every perfect gift is from above…”

I recently reached #500. I’m half way, and I’m still counting. It’s a great challenge.

Happy Thanksgiving! I’m especially thankful that GOD IS GOOD! ALL THE TIME!

A Happy Tuesday

 

This is how my happy Tuesday began. Really all my days begin like this because Sunshine smiles ALL the time. His nickname couldn’t be more perfect.

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 I was doing therapy with David, and Lily came in to be “timer girl.” So, my day just got happier. When we received our therapy program I was concerned about the time it would involve, but the program has actually been something that we can all do together. Lily thinks it’s fun to keep time and some of the therapy activities she can do herself. She enjoys being the big helper. In this picture she was helping with his face to face therapy – she takes the face to face quite literally.

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I was downstairs cleaning when I heard happy chatter coming from the baby monitor. David was taking his morning nap, and Lily was playing dress-up…or so I thought. Yes, she was in his baby bed with him. This made me happy.

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Happier

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and more happy! and YES David still has a crazy mo-hawk. We try to tame it, but it’s futile.

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Then the mail came, and I received a package. A friend of mine recently attended a pro-life dinner. One of the guest speakers was a woman with Down Syndrome. Do you remember that 92% of women who receive a DS diagnosis abort their babies? This woman talked about how she loved her life, was happy, didn’t want to be different. She designs and sells these shirts. This shirt made me happy. I actually cried happy tears, because it came on a perfect day. A day when I can truly feel and can say with all honesty that I love my life! I love my children and wouldn’t change a thing. They make me happy.

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I hope you are having a happy Tuesday, too!

 

Therapy

Over the weekend Louis and I took David to Jackson, Tennessee to be evaluated by a Neurodevelopmental therapist. We have talked to doctors, nurses, occupational and physical therapist, geneticist, parents and they have all told us the same thing – early intervention is the key to success.  We saw occupational and physical therapist at LeBonheur who gave us a few things we could implement at home. They encouraged lots of tummy time, no swaddling blankets, tracking with eyes, and then just encouraging normal baby interaction. I have researched and been working with David on a variety of different therapies, but really I have felt lost.

We have been praying for guidance – praying the Lord would lead us to the right therapist with the right approach. We feel as if our prayer has been answered.  The therapist we saw had a brother, Scott, with DS and two-thirds of his clients are children with DS. We have read testimonials of phenomenal results from individuals who have implemented this therapy program- exploding vocabularies, early potty training, elite gymnasts, perfect speech, easy social interaction, independent living (with parents close by). Michael Kane, the therapist, is a Christian, a husband, a father, a practical man who understands that life is busy. While he encouraged us to push towards therapy completion everyday he stressed that some is better than none and to do what we can.

David’s therapy consist of 24 intense, repetitious stimulating activities. His therapy activities cover fine and gross motor function, auditory function, language function, visual function, and tactile function. I am easily overwhelmed, and as a stay at home mother the majority of David’s therapy will fall on my shoulders. I am not complaining. I am SO thankful for my role as a full time mama. I am praying the Lord will give me a long term vision for the future, but the ability to focus on this day – this day with my daily grace. As parents, Louis and I, both want what is best for David. We want him to be as high functioning and independent as possible. We have high hopes and are encouraged, but we have our work cut out for us. If we cross your minds please pray for us.

Autumn

I love this time of year. It’s the beginning of cool days, the holiday season and activities that are special for this time of year.

Lily enjoying a small fire with a great daddy on a cool evening.

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We made caramel apples. I LOVE caramel apples. I knew Louis was a keeper when eleven years ago this fall I received an unexpected package in the mail. Yep, Louis sent me caramel apples. It wasn’t the apples – it was the kind gesture, the attention to detail, the fact that he listened to some random comment I made about caramel apples. He’s still that same wonderful man!

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Nora Kat, Lily and Charlie

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David was too busy reading to make a caramel apple.

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This year we have enjoyed the pumpkin patch twice. The first time with my sister, her girls, my mom and DiDi (my Aunt Diana). The second trip we made with a group of individuals who are expanding our world. We had a play date with four other families who have children with Down syndrome. These families are a blessing for our whole family.  I took lots of pictures…

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I call these “redneck tricycles.”

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Hay Maze

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Zip Line

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I love this picture of Louis! Isn’t he handsome!

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Super Slide! and it is a super slide. Lots of fun. This is Louis and Ramsey. Ramsey is five years old. Adorable! Loving! Full of Life!

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Cooper, Cason and Lily enjoy a train ride.

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Me, Morgan and Eskimo David

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I hope we get to spend more time with these families. I love meeting families who lives have been touched by Down syndrome. It gives a glimpse into the future. Last week I struggled. I struggled with anxiety about the future. I struggled as I tried to be the best mama I can be for both Lily and David. I struggled with worry over David and fitting in therapy on our already busy days. At the end of this week, God allowed me to see that His ways are not our ways, but His ways are good. I know these families would say the same.

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And last, but not least…the fall and this beautiful weather allowed for Pop and wheelbarrow rides. He’s such a cutie, I had to include this picture – Abraham.

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