We seem to have fallen into a bad habit of waiting several months between updates, and for that we apologize. Life just gets in the way – I think we’ve all been there. So settle in and grab a snack, because it’s gonna be a long one!
Today I am writing from a worn-down place. Sam has been off school for three straight weeks due to snow days, which means this mama is burnt out, behind, and bent out of shape. I am struggling to find balance. Between domestic duties (including way more cooking and eating at home than I would like during these pandemic times), coming up with activities for Sam that don’t involve screen time (although there is plenty of that too), learning and prepping for Sam’s first official preschool year in the fall, and continue to meet his physical needs and further his independence, I’m also attempting to restore my photography business to the level that it was at before Sam was born, plus deal with the pandemic curveballs with which we’re all too familiar.
I told Jim recently that I don’t feel like I can handle it all, and he reminded me that I don’t have to. He encouraged me to let go of the things that don’t matter and to prioritize finding and celebrating joy. If you know me then you know how hard this is for me, because I stress out about all. the. things. I have a hard time convincing myself that obsessing over the small things isn’t worth sacrificing my mental health, since it leaves me feeling ill-equipped to handle the things that do matter. So it’s led me to shift the focus of my prayers. The cry of my heart is no longer asking for more help, peace, time, or whatever will help me manage it all; but rather I ask God to remind me that I can’t manage it all without Christ leading me. Jesus restores my brokenness, even in my roughest moments as a mom, and He helps me recognize what does matter, and how to embrace it and find joy in it.
2020 was hard, not just on our family, but on nearly everyone we know. And 2021 doesn’t appear to be letting up anytime soon. But despite the struggles, joy and blessings have not been in short supply. And since there’s so much to cover over the last several months, I’ve done a recap of every couple of months:
Early last year we felt strongly that we needed to get out of our quad-level home and into something that would give Sam more safety and independence. So we listed our home for sale in late April. In May we had a small celebration for Sam with just grandparents for his second birthday, and shortly after we bought a one-story house in Troy while we continued to wait on the sale of our Tipp City house.
We opted for telehealth visits with Sam’s doctors at Johns Hopkins. In our last update we mentioned that Sam’s sleep study results had improved, but that he would continue using BIPAP at night. However, Sam’s pulmonologist felt that she saw enough improvement that he did not need BIPAP for the next several months. We are thrilled that he improved so much and that for now we don’t need to manage that part of his care. Sam’s condition is progressive, so he’ll continue to have yearly sleep studies to determine if more breathing support is needed as he grows, and the next one is scheduled for the spring.
In June, Sam’s physical therapy visits, which were suspended in the spring due to the pandemic, resumed outdoors, though his occupational therapy remained virtual and still is. We loved soaking up the fresh air, planting (and eating!) strawberries and playing with Sam’s lawnmower and sandbox that he received for his birthday.
We gained possession of our new house in mid-July and spent a couple of weeks cleaning and painting. And after having spent the summer eating his first corn-on-the-cob, licking popsicles on the back deck, and watching countless Air Force training flights out his bedroom window, Sam packed up Peaches the bear and all his other belongings and we all said goodbye to our house in Tipp City. It was a very hard move for me – I loved our neighborhood and nearly everything about that house. But it was harder still knowing that there was very little in the house that was safe and accessible for my sweet Samuel. As we settled into the new house in Troy, it was truly a blessing as we watched in awe how quickly Sam took to his new one-story digs. He explored fearlessly, and his mobility improved almost overnight, dispelling all my lingering disappointments about leaving our old house behind. On top of being able to access much of the house without assistance, Sam also has his own playroom, a ramp from the backdoor to the yard, and, much to his amazement and obsession, a playground down the street! He and his friend Clara even painted some artwork to hang in his playroom. We finished off the summer unpacking, settling in, and closing on the sale of our old house.
In September we were able to spend time with my family at the lake where Sam indulged in all things lake-life – “driving” Pops’ boat being chief among them. That special getaway was followed by another great adventure: Sam’s first day of “school!” We had our pandemic-driven hesitations about sending him, but we went ahead with a preschool toddler class, hoping that exposure to his peers would facilitate his development in ways that we couldn’t at home. After a lot of tears the first couple weeks (both his and mine!), he became comfortable being dropped off and is now thriving! Even though he’s only there a couple hours a day, two days a week, Sam learns and discovers so many new skills. He is less hesitant, more social, and loves his classmates and teachers.
October kicked off with Sam appearing on a billboard for Riverside, Miami County’s Board of Development, which resulted in a lot of texts telling me that “Sam is famous!” Later in the month we braved traveling during a pandemic and made the trip to Baltimore for Sam’s follow-up appointments at Johns Hopkins, as well as first-time appointments with the skeletal dysplasia team at Nemours Hospital for Children in Wilmington, DE. After seven appointments at two hospitals we were thrilled that there was nothing new to report. Sam received a new back brace for the one he’d outgrown and his doctors will continue to monitor his spinal curvature, stenosis, sleep apnea, hearing, and physical development. With a progressive condition like Sam’s, that was the best news we could hope for.
As I reflect on preparing for Sam’s appointments a year earlier, I remember bracing myself for bad news and feeling utterly helpless. We had only just received his diagnosis at his first birthday, which left my faith reeling. After all that he had been through being premature, I felt as though God had turned away, didn’t see Sam, didn’t want to heal him, or help our family, and that our prayers for miracles were going unanswered. But this time I felt different – I felt peace and reassurance. Sam will never be fixed – he’ll face a lifetime of tests and procedures – but I know he is firmly in God’s care. And as we left Baltimore this time, I saw clearly, maybe even for the first time since his birth, that the miracle isn’t for Sam to be healed or for his disability to be taken away. The miracle is the journey. The miracles are happening in the little victories, in the moments that taste sweeter because we don’t take them for granted, in being given the honor of becoming a part of a community that advocates for people like Sam. And in difficult moments, those are the truths we cling to.
Still with me?! There’s more..
After rounding out October as Daniel Tiger for Halloween, Sam entered full-on holiday mode! Sam’s virtual preschool Thanksgiving program would lead you to believe he’s not a big fan of Thanksgiving (I don’t think he moved or even blinked as the other kids sang “Hello Mr. Turkey!”), but his penchant for pumpkin pie would say otherwise. And what he lacked in Thanksgiving spirit, he made up for at Christmas. Sam is a big fan of all things Yuletide: He made his first gingerbread house, built his first snowmen (whom he named Frosty and Bopbop), memorized the words to “Rudolph the Rednosed Reindeer,” learned all about baby Jesus, “helped” decorate cookies, met Santa from a distance in downtown Troy, and when we plugged in the Christmas lights on our house he exclaimed “RAINBOW LIGHTS!” On top of all that he was well-loved (aka spoiled) by his family and Santa in the gift department. We felt truly blessed as we watched Sam soak up every last drop of holiday cheer.
So here we are in February under a foot of snow. Lately Jim and I have been reflecting on how much Sam has changed just since he started school in the fall. He really is an amazing little guy. It’s hard to believe that his third birthday is around the corner. He continues to amaze us with the words and phrases he learns, so much so that we have a hard time keeping up with understanding him. In fact, we’re currently in the process of having him evaluated for speech, along with gross and fine motor skills, to find out if he’ll receive therapies next year via public preschool. Although his vocabulary is extensive, he struggles with pronunciation, likely due to lower muscle tone because of his dwarfism. We are hopeful that he will qualify for public preschool so that he can get more assistance in that area and others. If he doesn’t qualify, we will begin looking for a preschool that will be able to meet his physical needs. Understanding the world of IEP’s, 504’s, and special education is a lot to learn. Luckily we have a lot of resources and people in our lives who are supporting us.
A part of why we have this blog is so that we can educate people on the experiences of people with disabilities and their families so I’ll wrap things up with a few thoughts on this. We recently toured the classroom at Sam’s current preschool where he would be next year. I won’t get into everything we discussed or are concerned about, but one thing in particular kept coming up in my mind afterward: The classroom table and chairs were taller than what Sam is currently able to reach to be able to get into the chair by himself. The teacher, completely well-meaning, said that they had no problem helping him into the chair. I stewed on that conversation in the days that followed I realized what was bothering me: By physically helping him into the chair, it takes away a piece of his independence. Sure, he may not get into the chair the way you or I would – it may take him longer, or he may need an additional step stool to do it. But he can do it, or as Sam will tell you “We are all ABLE!” in different ways. I mention this not because I am in any way upset with what the teacher said, but because it’s important to remember that Sam will move through life differently. And different is OK, different is beautiful. I myself am constantly learning what it means to empower my child, advocate for him, but also provide him with the assistance he needs when he needs it. There will always be a learning curve, both as a parent and as a parent of a child with a disability. I’m sure the next challenge is just around the corner, and I have no way to prepare for it. But I know that Sam will soon start asking questions about his differences, and I pray that I will be able to help navigate the conversations in a positive way. I want him to know that he is a bright, caring, creative, beautiful, and able human.
If you’ve made it to the end, congrats! And thank you. We’re so grateful for the outpouring of love for Sam and our family.