Grace's Mom Remembers

The day Grace was born our family’s life was changed for the better and in such wonderful ways!

September 22, 2002 God blessed us with Grace and is a day I will never forget. Arriving a week early, she had such a beautiful round face with chubby cheeks, and I can remember one of her hands fanning out like a star. (Looking back now, from the beginning she was a star; a bright shining star that touched many lives.)

Minutes after she was born, she was whisked away, as she wasn’t pinking up like most babies and needed a bit of oxygen. Next, a pediatrician returned saying he suspected she had Down Syndrome. I remember him stating that there were "people waiting in the wings for children such as these." I told him that our family wanted this beautiful baby girl.

Grace was quickly transferred to a hospital that had a NICU and she and I stayed in the hospital for two weeks before bringing her home with oxygen. She was diagnosed with an atrial septal defect which meant there was a hole in the upper half of her heart. Keeping her on oxygen for months allowed the heart to relax so it could heal. God had a plan for her, BIG plans, and He blessed her and us by closing that hole and another that normally closes at birth, but hadn’t. The cardiologist that came up from Madison couldn’t believe that while keeping Grace on oxygen, and with the many prayers being said, the two holes were closing without surgery!

Grace was such a happy baby and so smart. We all worked with her to help her reach her potential. Her older brother and sister found unique ways to stimulate her, so she’d have the best chance for development. I can still see her big brother, Travis, bouncing on the trampoline with her and lifting her as part of his weight training routine; while her big sister, Jessica gave her baths where she’d massage each leg and arm lathering her up until she was white as snow, circulating the blood to get more benefit out of bath time. We cherished every moment we had with her and since it took a bit longer to reach the typical milestones, we had more time to enjoy them and her. I made sure she got what she’d later call "Momma Milk".  For any child, especially one with Down Syndrome, breast milk gives them the best start on their development. Her Birth-to-Three occupational and physical therapists not only challenged her mentally, but also physically. Her dad would do lots of fun stuff with her too like put her pants on her head and socks on her ears and make her giggle and smile.

Tumbling, music, and dance classes were always a big hit with Grace. She started riding horse when she was 3. This continued improving her muscle tone, and also improved Grace’s speech. Many asked us over the years what we did to help Grace speak so clearly. We know God’s hand was in that, but we had also learned that horse riding (AKA hippotherapy) stimulates the muscles for speech production.

Grace did things in her own time, but whatever we put in her path, she did. She walked just shy of her 2nd birthday. She signed over 100 words, but after starting to ride horse she’d sign less words and talk more. She loved to tell others she became my little jabberbox, and that she did. She learned how to play the piano, violin and ukulele! We sure miss listening to her play and miss her beautiful singing voice in choir and in church, as well as her skill in acting. She shined in her last play performance, The Sound of Music. She was Sister Cilla, a marionette, a townsperson, in a party scene, and her favorite was being the festival winner who got to bow and bow and bow. She loved making people laugh. One of her uncles thought someday she’d do standup comedy. She would have been quite the star doing that!

Grace, our shining star, touched so many lives in her short time on Earth. Our family’s life was blessed beyond what you can imagine. She shined her light brighter than anyone else we know in such a short time. Her light remains with us!

Grace Emily S.,

You were the BEST! (The best in all that God put in your path.) I miss you so much! I miss EVERYTHING about you and what you brought to our lives. I am so lost without you here Grace. I miss waking you in the morning, seeing your smile, hearing your voice, your big hugs, your caring heart, the joy of homeschooling you and watching you learn new things, your weekly activities (horse riding, dance, co-op, choir, & violin lessons), your daily routine, seeing you coloring and working on crafts, eating together, sharing a soda, going places together, riding your bike, your laughter, the encouragement you would give to each one of us, your interactions with your nephews and others, your hour long bedtime routine , fixing your hair, the love you’d show us daily, your special notes you’d leave for us to find, not to mention you riding in the car in the front seat next to me and dangling your loomy band necklaces as you listened and sang along to your Elvis music playing! The list goes on.

Remember the song we’d listen to from America’s Got Talent after we lost your big brother, Travis Elvis Chicken Butt, Butt Cheeks? It was about our days and nights not being the same anymore, because we missed him so much. Well now, losing both you and Travis my days and nights are empty and will never be the same until we are reunited in heaven someday. I think I know how much you missed Travis now, because I miss you like that too. Picturing you and him together again is what I hold onto to make it through the pain of losing you in such a horrific way! We are so sorry Grace that we didn’t grasp what was happening in that sick hospital with those sick doctors and nurses. We know God is going to take what Satan (‘the big creep’ as you called him) meant for evil, and do something big with it for His Glory. Actually, He has been helping us do many things to save others already. Your love for Him still shines.

Love you always and forever ‘Beautiful’,

Mom