so long summer

I am sure many of you faithful followers have noticed in the past couple of years how few and far between my posts have become. I remember days of continuous writing, often because our little boy was in and out of the hospital facing surgeries, infections, new tubes and seizures. There was so much to talk about his health, but also many changes occurring with the older three. And as seasons change, Ryan’s health and the speed at which the older three’s activities occur has slowed to a steady crawl. And when I sit and think about this blog, about what words are ready to spill from my mind, what emotions I want to reflect on these pages, I find silence. Simple, unmet silence. I often feel my posts are a constant repeat of the last, that steady, repetitious turn of the wheel. Life changes every day, yet every day it stays the same.

For Ryan at least. His life is like a song on repeat. One day ends and the same day occurs with a new sunrise. The sun sets and the next day it is the same repetitive occurrence. Ryan lives for car rides and cuddles on the couch. His seizures are like an old faithful friend and as bad as they have ever been with the expected fatigue that follows. He still sits and watches the world pass him by. He still loves toys that spin. He still chews on blankets. He still loves to throw everything within reach. His days of school are upon us as he returns back to the known halls on Tuesday. Ryan loves routine and will be ready when dad wakes him for his first day and says, “Ryan it’s time to get ready for school”. He often runs to the garage door still in his diaper and t-shirt after a long night’s sleep, hair sticking up in all directions and without his morning cares. It will take some time for this old, known routine to sink in and become more than a distant memory. We are so very blessed with paras, teachers and nurses who love Ryan and take such good care of him during the school day. Overall, Ryan continues his long, slow decline. He gets thinner and weaker as the seasons change. His balance continues to decrease and he grabs tightly on to whoever is beside him when he walks. His wheelchair is the constant helper. His right heel no longer touches the floor, a side effect of whatever degenerative process is occurring in his musculoskeletal system. He continues to grow in height, but he is so very thin. Even the VNS in his left chest wall sticks out, so prominently apparent. Even though his body declines, his spirit is strong. He does not laugh much anymore, and the smiles do not come out as frequently as days gone by, but he can still throw a mean temper tantrum. When Ryan makes up his mind it is time for a leisurely drive, it is an all out war to get his way. He screams and stomps and throws whatever is on the counter near the garage door. He opens and slams cupboard doors and continues to scream at the top of his lungs. Just this summer we had to buy a baby gate to keep him from going into the kitchen so he cannot break coffee cups and anything else in reach when he does not get his way. I am not sure he even understands the consequences of his actions, but without words, without the ability to express his wants, all he has are his actions. It really is no different than what a very small child does in the same situation, except Ryan has more strength and a better reach. Sometimes we laugh, sometimes we get very frustrated, and sometimes we simply want to cry because there is no reasoning with a severely delayed teenager who does not understand why he cannot go for a ride five times a day. In spite of the irritation that can easily overtake me when these tantrums occur, I still cherish them because I know they are only but a season and someday, I will wish for just one more. Today, I still get to drive the worn path of pavement that brings such joy to a boy who lives so simplistically.
Trevor is a senior if you can believe that. In three days he will head back for his last first day of high school. The years merge and fold together so quickly that time can no longer keep accurate count of the changes as the seasons pass at lightening speed. Like many moms, I often find myself wishing to go back and do some of those early years over again. Asking myself if I really soaked in all in. If I really understood the significance of each day of their youth. Because one blink, one slight move and suddenly they are grown and becoming independent young adults. Trevor has become such a sweet, engaged young man. Every moment with him, every conversation and meal eaten together is a gift. A cherished and loved treasure because I know I will soon stop, exhale, and watch him walk across the graduation stage. I am excited for his future, for the unknown years ahead he still needs to navigate and decide on. He has time.
Sidney is entering her sophomore year of college. She has had so many exciting changes in the past few months. Her summer days were spent as a nanny for two families. She even moved into her first apartment at the beginning of the month with a college friend. We snuck in some time for wedding planning and even bought the most beautiful dress for her big day. The first time she put it on, I could hardly catch my breath as I fought back the tears. I knew it was “the one” but did not want her to be impacted or pressured by my feelings so I held them in tight until she eventually made the decision to purchase the dress. It is perfect for her. The date is set, the big decisions are made and reserved, the wedding party is known, many of the decorations are bought and sitting in piles in the basement corner. Nathan finishes school in December, and together they are busy and planning for their future. It is an exciting time but the emotions tug on this mama’s heart as I watch them so happy and in love. Like her brothers, she has grown up so fast, but the discovery of this new relationship with young adult children is so rewarding and exciting. It is more advise and support than the teaching, guiding and governing of their younger years.
Brad is moving into his junior year and still loves Missouri. He spent the warm summer days at the same camp he was at last summer. Now moved back in to his house near the university, he is back to work and ready to see all his friends who left for the summer. Definitely the most social of all our kids, Brad thrives on relationships and connection. I am excited to see where this next year takes him. Trevor and I got to spend a day with him several weeks ago and had such a great time together. Just this week Travis and his parents went down and met him for a round of golf and lunch. He has not been able to come home this summer because of the camp schedule, but we are looking forward to seeing him again in the coming weeks. Labor Day will be spent as a family at the lake house, and I am so looking forward to three days of boating, swimming, games and laughter. The older they get, the more I cherish the opportunities to slip away and spend some uninterrupted time together.
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As the kids leave home, the more grateful I am for the friendship between Travis and me. So often, as children leave home, couples look at each other and hardly recognize the partner standing in front of them. I am so thankful to have a husband and best friend whom I enjoy and look forward to spending time with. As we look on the horizon at the upcoming wedding and last graduation, we are considering moving to a new house. Our only trouble is deciding whether we want to stay in town or move to the country. There are many reasons to choose both options, but we have decided not to make any big decisions until the events of the next nine months have passed. Our jobs are good although my work environment has been very stressful. I am unsure what the future looks like there, but I know God has a plan, so I am trusting things will work out exactly as they should. Living in a state of unknowns is not easy, but I have learned over the years with Ryan how to do a new normal. Speaking of a new normal, check out Travis’ new look. I absolutely love it!
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Late June found us in Orange Beach, AL, for a week of oceanfront family time. Ryan stayed home so he could enjoy routine and being spoiled by Willow and Taylor. The rest of us had a blast on the beach, sitting on the balcony listening to and watching the waves, the beautiful sunsets, kayaking, playing games and just enjoying a relaxing time away.

Much love to you all!

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