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.