When Rylie was inpatient a couple of weeks ago we were on the 7th floor of the hospital with a view that could see for miles. One evening somewhere in the distance fireworks were being shot off. They were quite small from our point of view with the distance and being so high up, but we could see them and enjoy them in our own way. I had this thought that night, that there were probably people gathered around nearby wherever these were shot off, to enjoy them from closer up. Maybe they had just enjoyed a cookout or had spent the afternoon at a nearby park enjoying the warm weather. How different were our views, I thought – we both were able to enjoy and watch the fireworks even though clearly we were in a much different environment and circumstance than those setting off the fireworks for pure enjoyment.
Our family has had to learn over and over and over again how to balance and figure out how to find joy even in disheartening circumstances. We don’t always succeed, often succumbing to the pain, and getting stuck in despair. Another diagnosis, another hospital stay, another medical difficulty completely beyond our control. And then there are just the everyday challenges we walk through, in having a severely disabled member of our family. Every activity, outing, and daily plan revolves around accessibility and medication and tube feeds. People say we make it look easy, and probably often don’t have much idea of what goes on behind the scenes to go about everyday life with the extra responsibilities and care, but that doesn’t mean it’s always easy. Or easy to embrace and stay positive. But I admit that it has changed me for the better in more ways than I could have ever imagined. Pain and suffering, they change you. Sometimes for the bad, but sometimes for the good. It has taken a toll on us mentally and physically and emotionally, but it has also increased our capacity. Increased our empathy for others. And increased our awareness for when we see others going through significant challenges or heartaches. It has made us stronger, increased our faith, and taken us on a journey we would have most certainly never have planned on our own. And I can honestly say that Jesus never fails to redeem all the hard things. Usually in ways I would have never imagined!
So when I saw those fireworks go off in the distance from the hospital room that night, it reminded me of how we can still see the beautiful things even if it’s from a different place. Sometimes we get to see the fireworks up close when we have planned to see the fireworks and enjoy them. And other times, we enjoy them unexpectedly from difficult circumstances. Pain and joy can go together, we can hold them both. And often in our family and in others similar to ours, this is quite often the case. In fact more often than not when we experience joy, there is always at least a hint of pain because Rylie’s complexities don’t ever just go away. They are more manageable at times than at others, but there is a special kind of pain when you have a child with a chronic condition and complex medical needs. It does become your ‘norm’ in some way, but I’m not sure that it’s possible to ever fully escape this feeling in your heart when you know this is the best condition they will ever be medically. You can accept it and embrace it in a way, but it doesn’t ever fully feel right, so to speak. For me, it’s like a tiny metal weight is hanging from my heart. A reminder that even on the best of days, the pain is still there. Some days it’s heavier than others. And I don’t always consciously think about it, but it’s there. Affecting the way I think and socialize, and go about life in every area. In fact, most of what I do is probably filtered through it to an extent. But pain is a funny thing. It can affect you in ways you wouldn’t think it would. It makes you appreciate the good and beautiful things in life with a greater intensity. Fireworks aren’t just fireworks when you are sitting in a hospital with your daughter. They are a brief respite from the uncertainty of life in that moment, and a brief sense of relief and joy and your brain focuses on something other than your child’s unstable medical needs and the mental toll it has taken on you in the days and hours you have sat in the hospital room by her side. It’s a reminder that you can still find beauty if you squint hard enough. Even if it’s from miles away on the 7th floor.
This Fourth of July weekend we are back in the hospital again, with a full fireworks display because of the holiday. And once again I thought of the analogy. So often in our family, it feels like this analogy in more ways than one: like we spectate at the world going on around us while we watch from inside the window of disability and complex medical needs. We watch from afar and see all of the things from a different view. We see everyone’s posts of family beach vacations, and camping trips. Hiking trails and amusement park fun. All of which are nearly impossible for us to enjoy as a family because of Rylie’s limitations. We do manage to be creative and find our own ways to have fun together and enjoy life. And we accept that we will never be able to take a ‘typical’ family vacation, as traveling anywhere of any distance becomes a huge challenge because of the logistics of medical equipment, medication and supplies. And I guess it’s what also often lends to the feeling of isolation. But we have to be careful not to constantly compare what everyone else is doing, because we can sink really fast into self pity. And we have to daily choose to live in the present, learning how to thrive in our own unique ‘norm.’ I’ve used the analogy before, but it’s so true how we have to choose to look up and ahead, and not around or behind us because keeping focused on Jesus and the present is often the only thing that keeps us sane. And it’s because of our circumstances, we have experienced faith and hope and joy from a much greater intensity and larger scale than had we not had this journey with Rylie.
It’s because of the experience of living with a medically complex sister Rylie that my 13 year old son has more compassion for people than I ever could have instilled on my own. I’ve never seen another child filled with so much empathy and compassion for others. And it’s because of having a child with complex needs that I’ve made some of the deepest friendships with other moms of special needs kids, that we can sit in the pain together, and feel known and seen. It is a unique bond between friends that cannot be explained. It’s because of broken dreams and shattered hopes for my child, that I have a new strength that I did not know could exist and an endurance beyond what I could have ever imagined. And I doubt any of my original hopes and dreams could have possibly matched the fullness of joy my daughter now brings in even just her smile alone. Because more than anyone else I know, she knows joy. She feels it deeply, and rarely lets anything stand in the way of her experiencing it. And maybe if she walked like most other people, and didn’t have all of the medical complexities she would still be just as joyful. But it just wouldn’t be as amazing as it is now, as she demonstrates this attitude despite all of her challenges. Joy through pain and suffering is a joy only Jesus could bring.
This morning after running to the store to get frozen meals, (because I prefer them over the hospital cafeteria food) and grabbing Starbucks for our morning hospital fuel, a man who was also coming from the parking deck happened to get on the same elevator as me. He saw my backpack on my back, grocery bag in one hand, and coffees in the other and commented how it looked like we were going to be here a while too. I humored him, and he proceeded to comment on the handicap placard he saw hanging from my mirror in the van. He said, “ I saw your handicap sticker and thought, man that can’t be good!” His son was apparently here for a freak bike accident, and likely without any permanent disabilities. I politely explained that my daughter used a wheelchair and proceeded to get off the elevator at the appropriate floor. But I couldn’t shake his comment. “….man, that can’t be good!” It just didn’t sit right, but I’m also used to a LOT of ignorant comments involving Rylie’s disability. After processing it for a moment, I realized how unfortunate it was that he was unable to see past the disability. He only saw it as a hardship. And like most of us who try to avoid pain, anything that involves the word “handicap” doesn’t ever seem to be used in a positive light. But Rylie tends to break that ideal, and challenge that assumption. It doesn’t mean we still don’t have hard days, and deep disappointment. It means we have learned SO much we would have never learned otherwise. It has shaped our souls in ways that could not have possibly been shaped without the experience of her handicaps. And, for the record, we don’t like to say she is wheelchair bound, we like to say she uses a wheelchair. Because we are thankful for the wheelchair and the way it has given her more freedom to be mobile. And, she LOVES her wheelchair. She’s proud of her blue and white tag that hangs from the rearview mirror of our wheelchair accessible van. Because she focuses on the good things. And her example of her attitude in life wouldn’t be nearly as impactful if she didn’t have her wheelchair! So – random man on the elevator – had I been quicker to process, and perhaps a little less sleep deprived and a lot more caffeinated, perhaps I could have quickly informed you in our few seconds on the elevator that actually our handicap IS a good thing! It serves as a reminder of the blessing of a wheelchair and how it enables our daughter to get around, and it typically allows us to be able to park closer to help her have easier access to getting into places, AND it is just another thing that represents the beautiful way Jesus still shines through our daughter and our story and strengthens our hope in Him! Maybe next time he will catch me post venti Starbucks (Americano with a splash of cream, extra hot) instead of before.
Because of the hard things we walk through daily, fireworks from the 7th floor of the hospital are not just fireworks. And our handicap placard is not just a handicap placard. They are a reminder of how Jesus gives us hope through the pain. Joy in the suffering. And that we can choose to look for the good and the beautiful, even if it means we have to refocus or look a little harder sometimes…
Romans 5:2-5 “Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”
Comments