Hello again from the Mulders! So, it’s been about nine months since I really gave you a good update on our family. If you’re curious about how we are doing, read on, but I’ll warn you to hunker down – it’s going to be a long one! We have lots to tell – good, bad, prayer requests and a possible call for help. Nothing fancy, no philosophy today, just a bare-bones, “how the heck are we?” blog. Here we go…
First, I’ll start with Jarod. On the good side, he is still walking, talking, and laughing (his best attribute). We put him on a new medication last May, after two years of fear and deliberation, to help control his behavior. His aggression and rage were getting so bad last spring that it was becoming impossible to even want to be around him. We were at our wits’ end. We were afraid to try this particular medication because we didn’t want to turn him into a “zombie”. It turns out we made the right decision. Although it has caused him to gain over 30 pounds, his behavior has improved remarkably. We haven’t been experiencing the meltdowns that we once did and he seems so much happier, in general. He is constantly kissing us (then tapping, smacking and pushing us… usually in love).
On the downside, we still have many, many challenges with him. He is constantly on the go, pacing around the house, usually with a hockey stick in hand which bangs into our walls and baseboards. His emotions are still a rollercoaster ride. He can go from happy and loving to angry and spitting in a snap. Pray for us here, as this is our daily battle and it really wears us out. He also still has a very high level of anxiety, so he needs constant attention, to the point where he needs someone physically close to him at all times. He gets upset if one of us goes into the bathroom. He’ll knock on the door and say “Mom (or Dad), are you in there?”. The anxiety has also made it nearly impossible for Mark and I to go out. Sometimes we can leave him in the care of a babysitter or my mom and he’ll be fine. Other times he’ll cry and get really upset and we have to wait until he is asleep to sneak away. It also makes it a real gamble to take him places, for fear of needing to explain to someone why he just spat on them…
In addition to the emotional and behavioral issues, we’ve seen many losses cognitively and he’s starting to experience more somatic (bodily) manifestations of the disease. Although his language skills are still good and he can communicate his needs and wants (or telling us to “burp” which makes him laugh), nearly everything he ever learned in school is gone, including his ability to write. He still remembers some sight words, but writing words is gone, to the point where he can’t even get through his name anymore. He may get the first letter or two, but then sometimes just makes shapes or scribbles the rest. On the physical side, he is beginning to experience heel cord (Achilles tendon) tightness and muscle weakness. This led us to get him casted for “night splints” (plastic form-fitting shells with a metal frame and hinge) which he now wears to bed every night. I’m amazed that he’s letting us put them on him in the first place, is wearing them most of the night in the second place and not throwing them at us or kicking us with them in the third place.
Okay, on to Caleb. He is still very high functioning for a child with Sanfilippo Syndrome. He is a general education 2nd grade classroom and getting resource help with things he struggles with like organizing thoughts for stories, and sometimes teachers or para-pros scribe for him since his fine motor skills are poor. He can read at a late first grade level and math has been a positive skill for him, although we are watching his progress in both begin to slow. In Caleb, the disease looks a lot like ADHD, immaturity and some behavioral problems.
The tough part for us with Caleb is the frustration he experiences since he is starting to notice that his abilities are different from other students. When things get difficult for him at school, he sometimes hides under his desk. He doesn’t always like to be pulled out to work with specialists like Resource, OT or Speech. Because of his fine motor skill issues Art is a very tough subject for him. One day after school I was talking to him about his day and he commented, “my friends are better at art than me.” That’s painful for any parent to hear, when their child recognizes the gap between himself and others, but even more painful for us knowing there is so much more at play here. Another time he and I were talking about dogs and how we can’t have one because Jarod is allergic to them. He responded, “Oh, I know! I can have one when I am older. Like when I’m a dentist or a teacher!” That was a bittersweet moment. I love that he is smart enough to talk about the future…and I’m terrified that he’s smart enough to talk about the future.
All in all, however, he is still Caleb. He is funny and is constantly singing or dancing. He is full of energy and full of life. And – good news here – he is getting his wish from the Make-a-Wish Foundation in May! His wish is to go to Walt Disney World for Star Wars Weekend and that’s exactly what we’ll be doing!
So, how about Mark and I? We’re hanging in there. It took a very long time to get over the initial shock of it all. I think I’ve reached a point where I can go days at a time without crying – and it took a long, long time to get there. I still have moments where something will hit me the wrong way and I feel that grief all over again. Now, the life we are living seems almost surreal at times. It’s like we see the world moving on around us, but we don’t always feel a part of it. Due to Jarod’s behaviors and anxiety that I explained above, we have been living in somewhat of a bubble. Have you wondered if there is a way you could help, but weren’t sure what it was? Help us feel normal. J Invite us over. Let us invite you over. I think what we’re craving right now is some connection. And we can be pretty funny, I promise!
Okay, we’re almost there. I’d like to take a moment to thank all of you for supporting us over the last three years since the boys were diagnosed. Your love and prayers have helped get us through some of the darkest moments of our lives. Your financial support has enabled us to work with specialists in other states, provide extra therapies to help the boys maintain their skills and assisted us in connecting with other MPS families around the country (and even lobby on Congress for rare disease research!). We’ve had an idea that’s been simmering for three years now and we’re ready to throw it out there to see who would like to help us take everything to a whole new level.
Our dream now is to start a non-profit organization to help drive the research that is being done to find a treatment and, someday, a cure for Sanfilippo Syndrome. Big pharma is only so interested in researching a disease with such a small patient population. Much of the current work that is being done is pushed and funded by small family/grassroots organizations – and they are making progress! But, we are tired of waiting! We want to throw our hat in the ring with them and push it even further. I know that we have the family, friends and community that could make amazing things happen. So, who would love to be part of our dream coming true? What would we need? We would need help with the following: legal set-up and advice, tax assistance, help with website/graphics, people to run fundraisers, people to volunteer at fundraisers and ideas, ideas, ideas! And, of course, a few dollars to get things rolling is always good. We want to glorify God with all of the good that comes out of this. Matthew 7:7 – “Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you.” I’m tired of waiting. I want to cure my kids. I’m ready to ask. And I know the Lord has surrounded us with exactly the people we would need to make it happen. If you’d like to help in some way, or know someone who could – please contact us at teamjarodteamcaleb@gmail.com. Let’s do this!!
Last, but not least, I’d like to ask you to keep Mark’s family in your prayers. A little over a month ago Mark’s father, Putts, went into the hospital with a bladder infection. Three days later he suffered a heart attack and, one week after entering the hospital, he had a double bypass surgery. One week after that, he suffered a stroke. Putts is facing the biggest challenges of his life right now. The whole Mulder family covets your prayers during his recovery and rehabilitation. Thank you.
God Bless you all!!