The phrase it takes a village is commonly uttered regarding raising children, and that's been on my mind lately. Often, it takes the terrible things, like
to make you stop long enough to realize how blessed you are. So, I want to intentionally pause to thank our village for all they do for us, even though I'm certain to miss someone who makes our lives better.
Our families are incredible support systems for us, particularly our parents who will come to our house with a single phone call, regardless of the time. They've been with us through some of Teddy's worst seizures, as luck would have it, and were able to step in to help AJ through those times, although they had to be worried sick themselves. They are Teddy's greatest cheerleaders and supporters. Then there's our siblings, who ensure Teddy has the best shirts to help him make a statement (ranging from I do my own stunts to Genetically Enhanced). There's Teddy's cousins, who've learned to love and accept him (most of the time). Our aunts and uncles keep Teddy in their prayers and play with him. From tractor rides to ranger rides, my dad and uncle make sure Teddy is entertained. My dad helps us to adapt things to allow Teddy to participate, including his incredible Beast for winter tubing. My grandpa has embraced Teddy for who he is, no longer wondering whether he'll talk but instead having conversations with him and allowing Teddy to push his walker all around with them giving each other rides. My aunt lives in Milwaukee, where we've spent countless hours with specialists, and she's been at so many of those appointments if only to keep me company and help entertain Teddy. And she manages to make each visit seem like a treat that she gets to see us, instead of the other way around.
AJ is often on the receiving end of support for our family, but that child deserves his own mention. I'd say Dave and I struggle to help him understand at times that we're the parents and that's not his role to be Teddy's parent. Yet at the same time, he watches out for Teddy's safety, helps get him dressed (because Teddy often fights less if it's AJ helping him) and does things like wipe his brother's nose without even being asked. He does so much for his brother and makes our lives as Teddy's actual parents easier.
The angels, other captains and their families and the crew of myTEAM Triumph (MTT) are an incredible blessing in our lives. At first it was the sense of true belonging and acceptance, whether we licked the race chair (Teddy) or dragged people inside the storage trailer on hot days (also Teddy). It has evolved into friendships, people who I know would be here to help if we ever needed it. And they help so much in each training run and interaction that lets us know they care about our family and we're a part of the MTT family. I'm also coming to realize the parents in that group have lived so many situations we're likely to encounter and are terrific resources.
Then there's our neighbors who welcome Teddy with open arms, share their toys and keep their garage doors closed to save me from chasing Teddy into their garages. (Sometimes it's those little things that make life easier.) They also keep an eye out for Teddy and helped me track him down the one time I temporarily misplaced him this summer.
Teddy's first playmates were his outpatient speech, physical and occupational therapists, and he's still fortunate to see most of his original team 6 years later. They pushed him and made him work, but they also celebrated his successes, demonstrated tremendous creativity and patience and encouraged all the work we do. He's also had music therapists and a team at hippotherapy that help him to learn new things and provide support for him to grow stronger in his skills.
His Birth to Three team were similar to his therapists, although I always felt they focused a bit more on celebrating successes before setting the next objective. They came to our home, met Teddy where he was and were excellent at connecting us with other resources including his case worker and physical therapist who designs his braces. He's not only kept Teddy in braces that help him walk, but he's worked with us to get the right gait trainer and bike for Teddy.
We have a great case worker who has helped us get a number of things that Teddy needed to be successful, from adaptive seating to an adapted bicycle to a running and biking chair! She understands our family's desire to spend time outdoors and helps to minimize obstacles for us to be active as a family in our community.
We have been so blessed through the years to have fantastic babysitters who've worked with our boys in our home and taken them on adventures in the community. There's Jenny, who's watched our boys since they were tiny in Green Bay, and then there's a string of wonderful ones here in Oshkosh: Katelyn, Melanie, Bri and now Sigrid and Amanda. These ladies have our utmost trust and appreciation for spending so much time with our boys, helping out when the kids were sick and giving them such fantastic childhood memories. Our boys look forward to their time with their sitters, and it's because they're absolutely wonderful people who we'd be lost without. We cannot say enough about the relief it is to have reliable childcare, but these ladies often become an extended part of our family while they're with us.
We've also appreciated the relative consistency of our agency staff the last year and a half. Although the last couple months were challenging with staffing, we're now one week into a new provider, and Teddy had a great first week. While no provider will be perfect, we've appreciated some flexibility and consistency, which is tough to find through agencies.
At school, Teddy has such a support team. His team of formal supports and those who regularly support him is probably close to 20 people including his teacher, all the paraprofessionals in his class, his first grade teacher, his gym and adapted PE teachers, his music teacher, his art teacher, the nurse, all his therapists and the assistive technology specialist. That doesn't include the ladies in the office, who know him by name (doesn't hurt that he face plants into the glass window by their office because he's so excited to be there ... well, it might if you weren't Teddy). There are so many people in his school who know him and look out for him, including friends in his classroom and the first grade classroom. And there's also the other wonderful, caring teachers and teams he's had through the years. Although he's only in first grade, this is his fourth year in the school system.
We'd be remiss to discuss school without mentioning his bus drivers. We could not ask for a better person to take Teddy to/from school. Lori is absolutely a blessing, from providing reminders and helping keep track of schedules to being flexible when we ran into scheduling issues. We never doubt Teddy's safety nor his enjoyment when he's with Lori. Not only does she care for Teddy, she makes sure AJ also is included in her generosity.
There's our friends, those who stay in touch through Facebook and that handful that are there in person. Specifically, my friend Amber and her entire family have helped more times than I can count. They've let me borrow their older children to help entertain my own children, and their girls interact with Teddy without a second thought. Alexis and Hannah are two of Teddy's favorite people to see because they play with him and often let him dictate what and how they play.
Less than two years ago, I started running with some other ladies who were crazy enough to run at 4:45 a.m. through the heat and the sub-zero temperatures. I cannot imagine life without those ladies, who provide much-needed stress relief but also are willing to help each other with whatever life throws our ways. When I was heading on a trip, one friended Dave, so she could give him her numbers and availability and offer to help if anything was needed. So many of these ladies have also joined me as angels for Captain Teddy through MTT, creating special memories.
We have a fantastic team of doctors now, and we had a terrific geneticist who helped us search for answers for two years. Teddy's pediatrician understands our paranoia, for lack of a better word, when Teddy is ill and works well with Teddy. Our neurologist is someone who I'd drive hours to see because I don't doubt his brilliance and couldn't imagine finding someone else who treats Teddy so well and cares about us as parents.
Both Dave and I are blessed with understanding and flexible employers. We have some generous co-workers, who've shared both monetary gifts with us and gifts of time by taking Teddy to a MTT event on their own. We've needed flexibility when life with Teddy happens (or AJ for that matter), and we've been given that flexibility along with offers of how they can help.
The last several years our lives have been richer with the friendships made through I Run 4. Both AJ and Teddy have incredible running buddies who cheer for them, encourage them and make them both feel mighty special. (I happen to have a really cool running buddy myself.) This has been so wonderful for us. Even though so much of this support is from afar, it truly impacts our lives.
Another group that has enriched our lives is other families with CDG-PIGN. Our group is such a tremendous resource for each other because collectively we know more than most doctors and can freely share information and experiences. There's friendships that are formed, even if we never meet in person, because of our shared bond. These are people who simply get it. They're living some other version of our lives and can share advice, empathy and support. That is invaluable.
Then there's the adapted aquatics class, which was such a novel experience for us at first because someone else wrestled Teddy for an hour while we got to watch the pure joy on his face. He was doing something he loved, and we got to appreciate it because we weren't working with him the entire time. Now that time has evolved to us taking advantage of that time to work on projects instead of watching the entire class mesmerized, and it's still a blessing.
Last but not least, there's all those who pray for us. I know that our family, and Teddy in particular, are the benefactors of so many prayers, and we're grateful for that.
So, I know this is long, and yet I still likely forgot someone or some group. There are so many people who help us quite simply keep Teddy alive and then help him be his best self and live a fulfilling life. To all those people in our village, thank you. We couldn't do it without you.
