This update is long, long overdue, I know, but sometimes our lives feel so crazy and busy that it’s a miracle we get from morning to night each day, let alone find extra time to cram in a blog update here and there. I realize it’s been since May since I’ve updated you on our journey and it’s seldom that anyone comments on my entries, so hopefully there is someone out there to read this after my hard work! J If you’d like to know what’s happening in the lives of the Mulders, then settle in and read on…this could be a long one.
Let’s start with the good. Of course, the highlight of our year so far has been the construction of our very own in-ground pool. The concept started as Jarod’s wish with the Make-a-Wish foundation. He LOVES to swim and it was the best thing we could think of for him. MAW was going to install an above-ground pool for us in the spring, but when a family friend heard that was his wish he told us to put it on hold and let him see what he could do. That person was Kyle Kalman, of Kalman Construction. He wrote to his various vendors and suppliers and asked if anyone would be interested in helping him take Jarod’s wish one step further to install an in-ground pool for him. The response was great and company after company offered to discount parts or donate product or time to the project. Excavation began in late June and within two weeks or so the boys were playing, swimming and splashing around in their new pool. It was a very exciting project and, although it was sad to shut it down this fall, we are looking forward to opening it back up next spring for another season of fun. Now, this didn’t end up being cost-free for us, but the whole project cost about half of what it would have otherwise and we were blessed with family and friends who did fundraisers for us to help lessen the burden. Please check out the names of the companies who helped make this dream come true on our home page and please support their business if you can!
Another highlight for us over these last few months was Jarod being invited to Davenport University to represent Make-a-Wish last month for a fundraising event. He got to hang out with the men’s hockey team, treated to his favorite food of breadsticks from Jet’s pizza, received a basket of goodies which included a hockey jersey that the players signed for him and being introduced at both the men’s soccer game and the women’s volleyball game. He was a little star for the night and the event was so uplifting. A big thanks to MAW and Davenport University for the special, special night.
Now, on to the bad and ugly. I wish I could only write happy, inspiring updates for this blog, but our life is full of struggles and if you care about us, you should know these things so that you better understand our journey and our fears. You’ll know exactly what we need prayers for.
The bad. We had to make a really tough decision in August. Since April of 2011, Jarod has been in a drug study with a doctor in Chicago. This study is to determine the safety of using a drug called Genistein in very high doses. This is only thing even close to a possible treatment for Sanfilippo Syndrome at this point and it is not known yet if it will have any effect on the progression of the disease. However, when there are no other options, you grab onto whatever is available. His urine and blood tests hadn’t shown any lowering of his GAG levels, but we kept him in the study nevertheless hoping there would be effectiveness over time. In August we went to the cottage on Lake Michigan as we do every single year. But, Jarod didn’t want to stay there this year. So, he and Mark spent most of the week at home while Caleb and I stayed at the cottage. The meds were with me at the cottage, so Jarod didn’t get them for that week. By the end of that week we noticed a marked change in his behavior. Despite the pool, we had an awful summer with his behavior: so many blowups and violent behavior towards us and his brother to the point that it was hard to even enjoy time with him. It was all struggle and work. But, at the end of that week he seemed calmer. Happier. So, we decided to keep him off for another week and the improved behavior continued. We have yet to put him back on the Genistein. We are too afraid of going back where we were before, to a time that was so difficult it was destroying our family. Can you imagine making this decision? Deciding between the one thing that could even possibly save your child and a life where Jarod and everyone is happier? It’s not easy to talk about “quality of life”, but in this case I understand it. My child is happier most days, gives me so many hugs and kisses and “I love you’s”. Except on occasions, he is not screaming and beating me and crying and throwing or breaking things. Pray for us here. We are considering putting him back on the Genistein in a lower dose for a short trial period again, but haven’t gone there yet.
The ugly. For as much as I would love to inspire you with my hopefulness, I can’t make any promises here. Our days are very hard. Even though Jarod’s behavior is improved, he is still a difficult child. He can be so loving, sweet and encouraging in some moments and so very violent and full of rage in others. He is hyperactive to the point that he is always getting into something, spilling, breaking, making constant messes. He literally exhausts us…physically and emotionally. The hardest part is that he has already begun his decline. His is forgetting. Can you imagine watching your child forget? He used to read simple books, now he knows a few sight words. He used to be able to spell words (actually take spelling tests), now it is a struggle to get him to write his name. He used to know body parts and the names of zoo animals. Most of these are forgotten. He mixes up words or sometimes just can’t get words out. His conversations only revolve around his favorite (and comfortable) topics. He gets tired out quickly when he runs around or plays soccer. It seems to have become more difficult for him to get up stairs. He still does it, but never runs up them like he used to. It’s so heartbreaking as a mother to see these things happen. I can’t even describe it. And it’s happening so slowly that it’s almost imperceptible.
And how about Caleb? I don’t want to leave him out, but most of our struggles are with Jarod. Caleb is in first grade now. He is doing well, but requiring more Resource help this year. Writing is a big struggle for him. Word-finding is a weakness. He is also hyperactive and finds it very hard to sit or work for very long. We are so proud of him, though. He is working so hard to have good behavior at school. He is doing so well, but without a treatment soon, it will continue to become increasingly difficult for him each year, and will probably require more and more help. He is such a joy, though, for the most part. He loves to sing and dance (except on stage) and that is what you will usually find him doing. He also has a funny little sense of humor that continues to surprise us sometimes.
Well, I’ve reached the end of my free time and this blog is probably far too long anyway. I hope you are all enjoying the holiday season and looking as forward as we are to celebrating the birth of our Savior! An early “Merry Christmas” to you all!