I’ll get back to the meaning of this title later. For now, let’s start with an update since our trip to Minnesota last month…
I’ll admit I’ve been procrastinating on writing this blog. We’ve been home from Minnesota for three weeks and I feel like we are just now beginning to settle back into our home routine. The time change didn’t help. We haven’t received all of the final results from all of the boys’ appointments, but they did brief us after each one, so I have some information to share.
We’ll start with the positive. On the whole, the trip went well logistically, despite Jarod being out of his comfort zone again. He must be getting a little more used to airports and airplanes, because he did really well on the flights. The best thing we have learned about air travel through all of this is to contact TSA beforehand. When we explain our situation, and that Jarod becomes violent and aggressive if we have to wait in long security lines, they buzz us right through with a special escort. Best thing ever! It has eliminated so much stress from our use of airports. We did have one meltdown at the Mall of America and a few nights of tears before bed, but he went to each appointment and did great…no meltdowns with doctors. Caleb loves to travel, so he usually does great in that regard. He loves flying on planes and is really flexible when it comes to staying in hotels. That makes half the battle easier.
So, the medical stuff… The cardiologist said both boys have some thickening of a wall and some valves in the heart, but the damage thus far is minimal and not of concern yet. Sanfilippo Syndrome can cause damage throughout the body, especially in organs, so this is good news for now. We don’t have results from the MRI’s of their heads and abdomens yet, but we do have pics/video on a dvd – anyone a Neurologist and would like to decipher for us??). The spinal taps showed normal pressure of the cerebrospinal fluid (CSF) in both boys. Sanfilippo can cause elevated pressure and sometimes requires the implantation of a shunt – so good news here, too.
The neuropsych testing is where things get trickier. Sanfilippo causes the greatest damage to the CNS (central nervous system – this includes the brain), so this is usually where we get the “bad” news. We don’t have the final breakdown of scores, but they did give us overview in the office of what they saw. Caleb has stayed steady, even had one of his subscores (non-verbal) increase. However, for as smart and “with it” as Caleb seems, the disease is doing damage. Right now it mostly shows in his language skills and fine motor skills. He is still learning at this point, but they did stress the importance of staying on top of his skills as best we can, which they want to include summer school. We’re not sure how that will look yet. One thing they said that stuck with me was the importance of doing this to maintain skills “because no one knows when learning will stop”. Man, is that hard to hear. It’s easy to live in denial with Caleb because he just seems to “get it”. Where Jarod has always sort of lived in his own world, Caleb has always seems very much connected to ours. I have trouble looking at him sometimes and know that, without a treatment, I’m going to have to watch that all go away. I just want so much for him to be able to grow up like any other kid. But that won’t happen without SOMETHING. For him to have any chance he’ll have to endure pokes and prods, possible surgeries, human trials, who knows what. And that’s only if those options even become available. He’s my little buddy and it absolutely breaks my heart to know all that lies ahead for him.
Jarod’s psych test results were the low point for me. When we first got Jarod’s diagnosis I remember one of the genetic counselors mentioning that, with his late diagnosis, his plateaus might be 3-4 years (the disease seems to travel a loss/plateau pattern rather than a steady decline). If you remember our results from January of 2012, they had basically remained stable from June of 2011. At that point they said he was operating with the mental capacity of a 3-4 year old. I thought we might have more time on that particular plateau. But, now his scores have dropped. I don’t have specifics yet, but they said he is operating with a mental age of about 2 ½ - 3 now. I can’t deny that we’ve seen changes at home. I know he’s losing vocabulary, but I had hoped for better results than that. The only good news they had for us is that he still has “islands of skills” that remain at this point. Things that he can still do that perhaps a 2 ½ -3 year old would not be able to do yet. We have to keep pushing these skills to maintain them as long as possible.
I was on the verge of tears all day. Do you know how hard it is to take in that kind of information and try to pretend with your kids that everything is just fine? I hate this disease. I hate seeing it steal a tiny piece of my boys everyday – and I am powerless against it. But, I don’t want them to see me sad, so I pretend. On some days that is very difficult to do. What makes it even harder is dealing with Jarod’s outbursts and aggression most every day. I wish I could just enjoy the time we have with him, but most days are so full of stress and work that we’re exhausted when we get to the end of them.
So, back to today’s title. Getting rid of the “but”. I’ll admit that I have a lot of anger because of this disease, what it will rip away from my children and my lack of any weapon to fight against it. Some days I want to stomp my feet or throw a temper tantrum and scream “This isn’t fair!!”. And it’s not fair. I’m envious of other people and their “healthy” children and of them getting to watch their children grow into adults. I know I have today (and that is a blessing) and I should be thankful for that, but I want it all. I know that my children are progressing more slowly in the disease (and that is a blessing), but I really wish they did not have it at all. I know I should be thankful that they can still both talk and laugh and play (and that is a blessing), but I can’t bear the thought of them not having those capabilities in the future. And there you have it. I have to try to start living life without the “but”. Despite the tears I shed, I have to find a way to appreciate what I have right now. I can’t continue to worry about next year or ten years from now or who will care for the boys if they outlive me or who will care for me when I’m older or how I will celebrate the holidays without my children or grandchildren down the line, or, or, or. I have to be aware of the blessings that I have right now and appreciate them right now.
I know this blog has gotten long again, but I only update you every few months so I guess that’s to be expected. Bear with me a little longer. Many of you have probably seen, or possibly use, the devotional “Jesus Calling” by Sarah Young. There is one particular entry that always sticks with me. It’s from January 16 and based on two passages, Matthew 11:28-30 and Joshua 1:5, 9. Mind you, this is her interpretation, but the devotion says “Come to Me, and rest in My loving Presence. You know that this day will bring you difficulties, and you are trying to think your way through those trials. As you anticipate what is ahead of you, you forget that I am with you – now and always. Rehearsing your troubles results in experiencing them many times, whereas you are meant to go through them only when they actually occur. Do no multiply your suffering in this way! Instead, come to Me, and relax in My Peace. I will strengthen you and prepare you for this day, transforming your fear into confident trust”.
I’ll leave you with a positive – Jarod still has no idea, but we are only one week away from his Make-a-Wish weekend! Next Friday we’ll travel to warm, sunny Detroit (ha!) where he will get to attend a Red Wings practice, shoot pucks at Jimmy Howard (his favorite), attend a game and have a meet-and-greet with the team. He will totally love it. It’s so hard not to tell him ahead of time, but it’s for the best. Despite all of the lows of this disease, it has provided us with some experiences we never would have had otherwise.
Last, but not least, thank you to everyone who came to our pancake breakfast on the 9th! You kept us busy! Your love and support are irreplaceable to us. God bless you and may you have a wonderful Easter.
The Good, The Bad and The Ugly
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!