November 27, 2016

Three years. It was just before Halloween three years ago that we learned that Heston had one of the types of MPS, and then just before Christmas that we first heard of Sanfilippo Syndrome as he became officially diagnosed with MPS IIIA.

This past summer I took my oldest son Caynan to the allergy doctor for an appointment. As I sat in the examination room with him I couldn't help but think about the fact that I was sitting in the exact same room three years ago where I first heard of mucopolysaccharidosis (MPS). At that point in Heston's life we still had hopes that his delay in walking and talking were due to his laid back nature, and after tests kept coming back normal for all sorts of other things, our hope remained. I had brought Heston to the allergy doctor to see if it was allergies that were causing him to have a constant runny nose and congestion. And during that appointment, after I explained to the doctor that my 3 year old still was not speaking and we didn't know why, the doctor looked closely at Heston and then asked if he had ever been tested for mucopolysaccharidosis. You see she had worked with a doctor in France who was sort of a specialist with the disease and she thought she saw characteristics of it in Heston.

I left that doctor's office that day with a long word on a piece of paper to google at home, that would forever change the lives of our entire family. As I sat in that same room this past summer, it seemed like such a surreal experience- to think of a time before MPS was part of our world, and to think back to the moments where my innocence of the knowledge of the disease was taken away. It has been three years since Sanfilippo entered our lives as a reality, and yet in so many ways it seems like so much longer than that. Life before MPS seems like a lifetime away.

I have been thinking a lot lately about how thankful I am that God doesn't just give us children that we are qualified to care for. I know as a parent we all have moments and times where we feel unfit, unqualified and sometimes even unworthy to parent each of the children we are given. With Heston I feel this way times 1000.

I am an achiever. I wake up each day with a desire, sometimes a need to feel like I have accomplished something that day. A special needs child like Heston requires a lot of care. This is often in the form of things like changing diapers, preparing specific meals and cleaning up messes after, keeping him from grabbing and chewing things that he shouldn't and being in the same room with him to make sure he stays safe. I have often referred to him as a 9 month old that can reach everything. Some people have a natural caring ability. They seem to thrive on sitting and spending time with others, playing with their kids and even caring for others. To them a messy house can wait as time with a person is so much more valuable. I am not one of those people. I am learning to love the value of time with people over doing, but it is a constant battle.

I have always been an awkward person around special needs kids. I experience it all the time as I push Heston in the mall, or anywhere public really. Some stare, others glance away. I was one of those- the ones that glance away. I was that person who would never talk to a parent of a child in a wheelchair or one who had obvious challenges- mentally or physically. I would have no idea what to say and was so worried I would say the wrong thing and offend, that I would avoid them completely. If I had the physical space, I would walk further away, or if I didn't I would simply avoid eye contact, trying desperately to act like I just didn't notice that they were different.

Before Heston I would hear parents speak of their special needs children using terms like "gift", "angel from God" or "light". I thought they were amazing to refer to their kids in this way and that they were wonderful people to see the positive in an obviously disappointing situation. And deep down I felt like they were just telling themselves that their children were special as sort of a coping mechanism. Like they said that to themselves so that they wouldn't get too depressed about the fact that their children weren't normal, which was obviously what we all wanted- for our kids to be normal, to be great.

When it comes to hospitals and doctors I have always been okay with them as long as I personally am the patient. But as a parent or visitor of a patient I can be pretty much a wreck. No matter what the procedure, if I even think that my child is in any sort of pain or discomfort in the process, my head spins and my body wants to crumple into a ball. If I am the only parent present in this circumstance I can usually pull myself together to get through what I have to, but once I am home, or my husband is present, I feel absolutely exhausted as I am able to release myself from the responsibility of the care. No matter how strong I feel as a person in general, if I even think my child (or any child for that matter) is in pain, I am brought to my knees in no time.

You see if God had taken up a collection of resumes to see who was most qualified to care for and parent Heston, mine would have ended up on the bottom of the stack. I would never be selected for an interview. In fact, my resume would not have even been given. You see, given the choice to parent a special needs child? No thank you. It just isn't me- I can't see the value in those children like others can. And don't even mention the terminal diagnosis. Are you kidding me?! No way! I would much rather feel sorry and compassionate for others who are given such a thing, but in no way would I step up to say "Here I am Lord, choose me." Choose me to be that parent. Give me that child- I am willing. I wish I could say I would have felt that way, but in all honesty I know I wouldn't have.

And here I am, three years into a diagnosis for my child that is filled with doctors, everything special needs, tiring care and heartbreaking expectations. And through it all I can honestly say that I am so thankful for this gift from a God who knew that it was just that- a gift. We are getting ready over the next couple of months to have a G tube inserted into Heston to allow us to nourish and hydrate his body as his ability to drink and swallow are deteriorating. From the surgery to the recovery, to the fact that my son will have a "button" sticking out of his abdomen that I will insert food and liquids through, it all seems overwhelming to me. And yet, I am grateful. Grateful that we have the opportunity to have such a thing that can help him stay as healthy as possible. I know that no matter how hard this one of many steps we will take with him will be, that it is so worth it if it means that we will get more time with him.

Heston is a light, an angel from God- a gift. I am not just saying that to make myself feel better- I am truly experiencing it. There is simply no real way to describe what value Heston has for us each and every day, as it is not existent on paper or through any description. It makes no sense to our logical society. But that doesn't make it any less real.

Three years ago I googled mucopolysaccharidosis for the first time and my heart broke. It broke out of anger, disbelief and disappointment. I felt that as a parent I didn't belong in the Sanfilippo family- I was too good for that. Today I google the same word and my heart breaks out of compassion for these beautiful children and out of a desire for them to find a cure for this disease. It breaks out of humility to be a part of the Sanfilippo family- a group of unbelievable parents who inspire and amaze me daily.

God is still in the business of changing lives and changing hearts- sometimes it is just in a form we don't expect or even know we need. May we see the incredible value that lies in a change of perspective.