Last December, my granddaughter, Maggie started coming each weekday to stay with her Grammy, while Mommy and Daddy are at work. Not having had a little one around for quite some time, I knew that life would be different, but I had no idea just how much!
Maggie was then almost 1-1/2 years old, but couldn’t sit up on her own yet. She was pretty wobbly, so we would prop her up with pillows all around her. At that time, she held a record for being the tallest baby ever recorded for her age in the county where her pediatrician is located; so, we understood that her inability to sit on her own was the norm for being so very tall. But, as tests were ordered, we found that Maggie has a chromosome issue [repeating inverted duplication deletion of the 8p chromosome]; it’s a rare disorder with around 50 cases in the nation right now. With this issue not being a common thing, we found that there aren’t any rulebooks necessarily on what the medical community expects for her.
I remember the moment I first heard this pronouncement over Maggie; I was at a beautiful retreat in Lake Junaluska, NC, leading worship at a weekend conference.
In the middle of a song, my phone began to vibrate on the music stand. When the worship time was over, I quietly stepped out and returned the call to my son and daughter-in-love. Hannah sadly told me the news. At that moment, time stood still as I was keenly aware of the importance of what was about to come out of my mouth. You see, there are times in life when you find yourself at an intersection; a place of choosing. Sometimes we are aware of the crossroads, and sometimes not so much; nevertheless, if we are paying attention, we can make the best choice at that crossing, and change the direction where we are to be heading. This was one of those moments for me.
On that phone call, from the deepest place in my belly came pouring out something like this, “Hannah, no matter what the doctors say, no matter what their report is, we choose, our family chooses, to believe God’s report for Maggie. We believe what HE has declared over little Magpie. What God says is what we agree with. And we know that God declares wholeness and health over her.” Yes, my heart was racing, and yes, I wanted to cry, but I made a choice in that moment to believe for MORE than I could see. To believe for LIGHT to invade dark space. Out of the abundance of my heart, my mouth spoke. (This is why it’s so important to build ourselves up in our faith, and to hide God’s word in our hearts.)
Our family strongly came together that day as one, pursuing God’s best plan for our Maggie. And the adventure continued…
We tried to get Maggie into weekly therapy, but hit our proverbial heads against the wall due to getting stuck in the insurance/medical/red-tape machine. We found ourselves in the allowable and lacking once a month time slot for Physical Therapy; so I asked for a list of homework assignments, determined to work with Maggie each day. And every single day, we pray, declaring health to her whole body, speaking healing scriptures aloud over her, and thanking God for what He is doing in her and through her life.
In the years prior, in my own life and in taking care of my aged father, a stroke victim, I came to appreciate baby steps – the power of taking one little step at a time. (More on that will be forth-coming.) I learned to celebrate baby steps with dad. And this mindset is really paying off with Maggie.
She soon learned to sit, then stand (propped up) against an ottoman each day for playtime, increasing the time as we progressed. She didn’t want to pull-up. She didn’t like textures. So we made a game of playing in food, paint, dirt, play-doh; and I bought every texture of fabric (silk, burlap, cotton, jersey, velvet, terrycloth) that I could find to let her touch and experience.
Spring passed, and as an accountant-Grammy, I worked on a few tax returns. One day, a chiropractor’s daughter, and friend, came to have her taxes done. Angie noticed a problem with Maggie’s feet and asked me to bring little Magpie to the office. Once there, they gave me some ideas for future therapy. One such idea was to build parallel bars to teach Maggie how to walk. That day, my hubby, Randy, bought the supplies to construct the bars.
Maggie’s parallel bar exercises went like this: I stood her up, placing a hand on each side bar. I slid her right arm and said, “Reach”; then I moved her right foot and said, “Step”. After that, I moved the left side. Arm first, then leg. Right, then left. Over and over, until we reached the end of the bars.
Day after day, morning and afternoon, Maggie “walked” down those bars, “reach” and “step”, over and over. She didn’t initiate any movement, at all. For weeks, we practiced. Until one beautiful glorious day! I moved her hand on the bar, “Reach,” and before I could get to her foot, she stepped on her own! Oh. my. word. We had to stop right there and have a praise party! Maggie, Grammy and Poppy, and Uncle Josh clapped our hands, danced around, and celebrated this breakthrough! (Israel Houghton helped us out that day – You Are Good)
But how could I get her to reach and step all by herself? What on earth could motivate her to do so? Coaxing and calling? Nope. Her toys? Nope. Blueberries. It was blueberries. Maggie loves blueberries. She could pick them up and eat them by herself at that point, and she would gobble them up like a little piggy. She walked for blueberries!!
(Thank you God, for creating wonderful blueberries for my little Magpie!)
Here is a video of Maggie walking that day for blueberries!
Woohoo!! What a breakthrough! Maggie’s mama was so excited when I sent her this video, that she shared it on Facebook; and she had a boatload of love poured out on her. And I started getting requests for how to build these bars. It was at that point that I decided to begin to blog and share ‘Life with Maggie‘.
From that point, my sister, Kathy, sent me a video of a little boy whose father had built a PVC walker for him. So Poppy (Randy) and Maggie built a walker.
No swivel wheels, just walking straight forward; because she wasn’t strong enough to keep the wheels from going sideways.
Here’s a quick video of Maggie walking with her new little PVC walker.
So with this PVC walker, Maggie walked straight ahead until she ran into a dead-end. Then I would turn her around and let her walk again.
Soon afterward, her pediatrician wrote a script for a gait trainer, with no attached seat, so that she doesn’t get dependent upon it. Right now, Maggie has a blue loaner (thanks to AllCare Pharmacy); but soon, she will have her own shiny pink “car.” We are praying that she won’t need it for very long.
And, P.S., after many, many phone calls, we now have PT, OT, and Speech Therapy 2x per week in a closer location. (Thanks to Mrs. Redman from Babies Can’t Wait for helping us with all those phone calls!)
Here is Maggie walking into therapy with her gait trainer loaner.
Please pardon me if I post too many pics of this little one, who has been to docs of neurology, gastroenterology, genetics, cardiology, psychology, dentistry, pediatrics, optometry, audiology, and so on, and is still carrying a little tune (only a hum right now, sometimes an “ahhh”, but we are working on it), and almost always wearing a great, big, beautiful smile. I can’t help it. I am a grateful Grammy.
“For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.” Jeremiah 29:11
If you or someone you know would like to get the info on the equipment we built to help Maggie, please contact me, and we will be happy to share!
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Until next time, make your day count!