Running The Race
Our recent trip to southern California was originally meant to be a getaway for Stephen and I, with no plans other than to explore and relax sans kids. Instead it turned into something much greater and even more impactful than we ever thought it would be.
It has always been a dream of ours to one day live in San Diego, California. Our first big trip with Evie was to San Diego when she was 18 months old. Although it was an incredibly trying trip (unbeknownst to us she was going through regression) we thought, if we could end up living there at some point in life, it would be an absolute dream come true. Over the years this city has been a common vacation destination for us and each time we went we fell more and more in love with it.
So, a few months ago we decided, why not? Why not take the leap, step out in faith, yet again, and see where God takes us? Our kids are still young, we seemingly have the energy to make another move, why not live where we want to live sooner rather than later? We felt the seasons shift for us up here in DC. Our support system was strong, the schools were accommodating to the best of their ability, and our church and friends were what made living here feel like home. However comfortable we were, we felt led to move forward. This was where we received Evie’s diagnosis, where we grieved openly with the ones we love and as a little family in the comfort of our little farmhouse. We have been broken to our core and made new again, we have been strengthened in ways we never thought possible and in ways we never honestly wanted to be. What should have left us shattered ended up giving us a greater appreciation and perspective for what we do have and how we want to live out our life. We have been built back up and equipped for whatever may lie ahead. We were ready for whatever He had for us next.
With the decision to move west underway we started taking steps forward, making plans, and preparations. With our beloved farmhouse sold and a trip scheduled for southern California at the end of September we had one big hurdle to jump over…where would we live?
As with any big decision we make as a family, if it seems as though we are having to push and shove doors open to make things work, then we move on. One thing we’ve learned is that God will open doors and make a way for us even if we may not have all of the details or much of an idea of what is ahead. Things we knew for sure that we wanted for our family in this new season-a home in a community that we could navigate by walking or biking, some conveniences close by such as a grocery store, good schools and a hospital not too far away. A playground or even just some open spaces where the boys and I can go wander while we wait for Evie to finish her day at school, and the beach within driving distance would be amazing. This may seem silly, but a big thing for me was wide, flat sidewalks where we can go for walks where Ev can have a little bit of freedom to walk ahead of me without me worrying she is going to trip or fall off the curb. It wasn’t a big request, but one that was important to me nonetheless.
The first day in San Diego we drive all over the place. We visit different areas and drive by loads of available houses trying to get a better grasp how each area is laid out and asking questions along the way. How far are we from schools and are they good? Can I navigate the area easily with the boys, while Stephen is working, or would it be a significant challenge? Would we be far out from things we would need for everyday living or close by? Is the beach within biking distance or would we have to drive? All of these things are luxuries, I know, but for our little crew they make the biggest difference in our quality of life. For us, the simpler things are the better, especially for Evie.
Stephen and I had been scouting out places to live since we decided to move, and everything was quickly becoming unavailable. As soon as we saw a nice place pop up it would just as quickly be scooped up. We were exploring options in areas we had never been in before very strategically avoiding the one place we knew we would never be able to comfortably afford to live in–Coronado Island. We had spent some time on Coronado last year, right before Merrit was born, and absolutely loved the city. It is a 3 square mile island, entirely walkable, with the beach on one side and the bay on the other, beautiful homes with a tight knit community; however, it just so happens to have homes in the “in your dreams” price range. The prospect of living on the island was always a “wouldn’t it be amazing” or “could you even imagine” pipe dream. Well, as we were trying to figure out our next steps, a home on Coronado, became available.We did not hold much optimism for the place since there weren’t a lot of photos and it was considerably lower in price than any of the other homes we had shown interest in so far. Honestly, didn’t make sense. So naturally we thought, let’s at least take a look so we can rule it out. When we pull onto the street of this house, neither one of us says a word, we just take it all in. The first thing I see is the wide avenue with extra wide and flat sidewalks. We step out of the car and meet the landlord who starts highlighting all of the amazing things about this home and location as though they have been taken right off of our checklist. The house is cute, it has everything we would need to be comfortable and with great natural light. It takes us all of two minutes to tour everything this house has to offer. At the end of it Stephen and I step off to the side, look at each other, and just smile, almost in disbelief. This is it. It is a simple home that we could see ourselves settling into for quite some time, well within our price range, and only ONE BLOCK from a little beach right on the bay. We put a deposit down right then.
Being that we were in a bit of shock we decide to go for a walk to see what’s around: All within just a few blocks is a beach on the bay, large grassy areas to play, a large playground, grocery and a hardware store, and tons of places to eat or window shop. Every single sidewalk is flat and wide with very few obstacles if Ev were to navigate. We still haven’t spoken much at this point, I think both of us were thinking if we talk then we will make it all go away, so we go for a drive. We end up getting a little lost, on an island no less, and dead end right into the school district building so we decide to stop in. We get out just see if we could possibly speak to someone about what next steps are for Evie’s schooling in our new city. We get right in and have a meeting with the SPED department head and tell her a little about our family, and Ev, and then casually mention that she has Rett syndrome. To our great surprise, this bright young lady exclaims that she knows what Rett is and that they have had 3…3 other girls come through the district not too long ago. One of which still lives on the island. We are floored. Most people do not know what Rett Syndrome is, let alone have experience with it. We left feeling as though this was yet another door that had swung right open for us.
After a quick search online we easily come across the other Rett family that lives on the island.We ended up reaching out to them to introduce ourselves and they invite us over to come chat and meet their daughter while we are in town. We accept the invitation to stop by their house so I start preparing my heart. This was going to be heavy. I honestly didn’t know what to say. Their daughter is 27 years old. Twenty seven. We could be sisters, and they are much further along on this journey than we are, I didn’t know what to think or feel.
When we finally arrive at her house and meet her she offers us a smile and the warmest greeting. We start talking as though we have known her for years, which when you have this one very pivotal life detail in common this is often the way relationships start with other special needs families.
We talk for a while and she asks if we would like to meet her daughter, and to that we said we would be honored. As we are walking toward her room her daughter’s nurse comes and gets her, she is having a hard time so we wait. A few minutes later she emerges carrying her girl, as I do my Ev, cradled tight and close to her body moving as though they are one entity, and asks if we would like to get some fresh air. We take a seat overlooking their backyard while the breeze is blowing gently and their dog is running up and down the yard taking turns saying hello to every one of us. Stephen and I say our hello’s and she responds, just as our Ev does, by looking each of us right in the eye. (Truth be told she was quite taken with Stephen, following him with her eyes, and listening to him as he talked. I don’t blame her. He is quite cute). We were only meant to stay for a bit, as to not take up their precious time in the evening before they had to start the rounds of getting everyone ready for school the next day, but we stay for over two hours. The mom recounts her daughter’s whole story and we remark on the fact that, as a young girl, she was so much like our precious Ev. Active and vibrant, social, loving, adventurous and bold. As we are talking, exchanging stories, challenges, triumphs and everything in between—I catch myself watching the mom. She is still there, she is still standing (technically sitting), she hasn’t broken, she hasn’t given up, she is hopeful, she is determined, and she carries herself with grace and resilience, even after all these years. I am truly, and utterly, amazed.
You see, I have never wanted to be faced with what the future may look like for Ev, and up until this point I have never had the opportunity to meet someone much further along in life who has Rett. I know there is a hopeful cure on the horizon, but that very well could take ages and even then, would it significantly help our girl? There are still so many unknowns. What I do know is that I have met two people who have been on a very similar journey to ours, have gotten past and way beyond the point we are at, and they survived. They have not only survived, but they have lived and loved, laughed and enjoyed life to its’ absolute fullest and to the best of their abilities. They have kept going, even when they thought it was too hard and they are all the better for it. I had the great privilege of seeing what our life could look like in 20 years. With her girl tucked neatly on her lap, covered in a blanket, sharing comments to our conversation just between the two of them. I saw what my life may look like in the not so distant future, with her other children bustling about busy with life, going to and fro-while this amazing mother and daughter duo quietly and calmly observe their surroundings perfectly content to just be, wrapped in the comfort of one another.
As I continue to marvel at the life they have led thus far, and continue to lead. A scripture that has always been held close to Stephen swirls in my heart. Philippians 3:13-14 “I’m not saying that I have this all together, that I have it made. But I am well on my way, reaching out for Christ, who has so wondrously reached out for me. Friends, don’t get me wrong: By no means do I count myself an expert in all of this, but I’ve got my eye on the goal, where God is beckoning us onward—to Jesus. I’m off and running, and I’m not turning back.”
This family is a testament to living out this scripture and one we have been trying to live by as well. They are still running the race set out before them, and although it is hard, they are doing it well. They have not grown weary. This is what we strive for. We are facing life full force and head on, not just for us, but for our amazing girl and beautiful boys. We made the decision to move away, yet again, from all of our known comforts and supports for a space in life where we can run our race well with true faith and endurance. We are not promised tomorrow, next week and especially not next year. So when we had the “maybe one day” dream of moving to San Diego on our hearts so fervently we decided to answer the call and here we are. Our one day has turned into now.
In three weeks our little family will get on a plane and take a one way ride to a home we know our children will love, where we can live simply, where Evie will live her best day every day (even on her hard days) and where we will share our story and the love of Jesus with all those we come to know. We are truly amazed by His provision and His goodness. We could not have done any of this without Him. He has made a way for us, He has guided our steps and orchestrated all of the pieces. We rest in Him not fully knowing what is next, but confident that we are running our race with perseverance, the race that He has set before us, with our eyes firmly fixed on Jesus, who will perfect our faith. I am so thankful for that, for we still have a long way to go.