It’s been an interesting week. I decided to become a SANE (sex assault nurse examiner) and had forty hours of training which was very interesting. We had a fabulous speaker who is highly regarded nationally. But, it was hard to sit for that long because I am used to being on my feet! This is something I’ve tossed around for several years now and finally decided to do it because we need more trained nurses in the ED to care for these patients. I didn’t enjoy being gone from Travis and the kids for five full days as I am spoiled with twelve-hour shifts but overall, it was a really good experience.
I also talked to the PA at Ryan’s neurologist’s office and made an appointment with the doctor for Thursday. We are going to sit down with him and talk about “now what?”. It’s a very, very, very emotional topic for Travis and me because we both feel like we are at the end of the road with Ryan. As a nurse I am very much aware that doctors don’t always tell patients and their families everything. They reserve their opinions, thoughts and insights sometimes, and I’ve seen it firsthand. It’s hard to be on the other side wondering what the doctor thinks about Ryan that he isn’t telling us, and that’s the information we are after. We’ve tried four brain surgeries, diet changes, the stimulator implanted in his chest, at least fifteen seizure meds over the past eight years, numerous other tests and monitoring. And we are to the point that we feel we’ve tried everything there is to try. There is only so much we are willing to put Ryan through and we feel like we’ve reached that point. We know medications aren’t going to work long-term and just experienced that again for the umpteenth time now that we are through the honeymoon period with the Valproic Acid he has been on for the past few months. The seizures have returned and now there are new ones we’ve never seen before. Ryan now has seizures in his occipital lobe in the back of his brain that we see in his eyes. So we simply want to know what is next. And maybe we won’t get that answer but we don’t know what to expect, what is reasonable, what is OK, what is not. There has never been a diagnosis, an idea of what is going on in his sweet little body, what is causing his brain to continue to seize so much. It’s hard to watch after everything we’ve put him through, everything we’ve been through emotionally, financially, spiritually, everything our amazing older kids have had to endure and try to process. So now we simply want answers we may not get and that is the most disappointing part of it all. Knowing we will probably be told no one knows what to expect now. Travis and I both see a beautiful little boy who is so loved but who is so trapped in a body that fails him. We know he is exactly as God intended him to be. We know he has touched lives, changed hearts, moved people in ways no one else could. Yet in my human mind, I want more. I want more than to simply trust God for whatever tomorrow brings. I want something I can read, see, touch, process, rationalize, study. I want a diagnosis that has a beginning and an end. I want to know what is coming tomorrow, what is going to happen to Ryan, how long he will live. I just don’t know what I should be thinking, expecting, preparing for. And deep in my heart I know I’m not going to get the answers I desperately want. God didn’t hand us an outline in the manual of “how to parent Ryan” when he was born. I think most of us parents wish we had that with each of our kids. Because I’m certain if I had such a thing, as silly as it sounds, I wouldn’t need my heavenly Father when I’m fearful for the future, when my tears are flowing, when I am overcome with anxiety and negative thoughts, when I worry and find myself making up scenarios in my mind that will most likely never come to be. I wouldn’t have learned to trust, to walk by faith, to remember the verse in Proverbs that says a man’s heart plans his way but the Lord determines his steps, and I certainly wouldn’t have learned to let go of my dreams and desires so they could be replaced by God’s perfect will for my future. It’s just hard, this journey we are on. I never expected my life to turn out as it has. And while some days all I can concentrate on is all the loss, the disappointments and heartaches, there are far more days when all I can do is relish the joy of the Lord in my heart, smile at all the answered prayers, the numerous ways he has met every single one of our needs, the depth of my prayers every single day as I pray for God to give me neither poverty nor riches but give me only my daily bread. It’s an amazing journey Travis, the kids and I find ourselves on and if given the opportunity, I’m not so sure I’d change the circumstances of my life because I wouldn’t want to miss out on the blessings God has showered on us, the richness of his love, the abundance of his grace. He’s doing far more than we even realize and I’m so excited to see what’s coming – good and bad.
All I know is what is probably very obvious to all of you – my emotions are very conflicted. And I suppose that’s simply part of the journey, a piece of the process. And it’s OK. I know that. I just don’t want my human emotions and fears to get bigger than my faith which tells me no matter what the future brings, God is there, he has a perfect plan for us, he’s never going to leave us or forsake us no matter what trials and blessings are coming. The unknowns can be so very hard to process though. It’s a journey.
Travis saw the doctor recently, and we are waiting for labs to come back because we suspect he has Celiac Disease which is basically described as this: an autoimmune digestive disease that damages the villi of the small intestine and interferes with absorption of nutrients from food. What does this mean? Essentially the body is attacking itself every time a person with celiac consumes gluten. I won’t go into the details that most of you won’t want to hear anyway but this is something we have suspected for a long time. He will be referred to a GI specialist but has already cut gluten out of his diet and has seen good results when he strictly adheres to it. It’s just a hard lifestyle change to become accustomed to. Who wants to never eat another piece of bread or cake? Not me. And I’ll tell you, gluten-free pizza or bread is not the same as the real thing. But it is what it is.
Otherwise we are very aware the summer is coming to a close much too fast. In four short weeks the kids will be back in school – August 14th to be exact. They are still having lots of fun with friends, swimming, shopping, hanging out, running, lifting weights, eating a lot, having sleepovers, doing normal kid stuff. And they are such great kids. Travis and I are so blessed and it’s something we never take for granted. The kids are all growing and eating us out of house and home. Our grocery bill is ridiculous. And when I find Trevor eating lasagna at 10 pm then a huge bowl of cereal at 11 pm and he says it’s his third meal since dinner, I know he’s growing. He is simply never full. Brad has football camp in two weeks, Trevor has Camp Sonshine the last week of the month and Sidney is starting new volleyball clinics. They all have activities but still have a very free summer to do as they please which is how it should be since they are kids. We chose not to put Ryan in summer school because he is sleeping so much and are in the process of trying to figure out what to do about school this fall and how much to put him back in for. He just woke from a three-hour nap which is his daily routine so if we can, we will probably just put him in school for the afternoons. There are a lot of details to figure out with that.
Travis, Brad and Sidney are in Omaha right now waiting for Brad’s best friend Nathan to get off a plane from Denver. His family moved out there last month and Nathan is coming back until Friday when a group of church boys will be driving to the Colorado mountains for four days of camping, hiking and biking. Travis is going with them as a leader, and I am praying they all have a fabulous time.
I saw this quote somewhere this week and was very struck by the truth in it……