June 3, 2015- Heston's 5th Birthday

Today is my beautiful son Heston's 5th Birthday. A lot of parents with Sanfilippo Children dread birthdays. You see, when your child is only expected to have 10 to 13 birthdays, you don't want them to come. Sanfilippo syndrome is a regressive disease, so while with most kids you are excited to see how far they have come and how much more they can do from one birthday to the next, for those with the disease we fear what abilities will be lost by each next birthday. "Regressive" is like the Debbie Downer relative you have to invite to the party who you know will suck the joy and fun out of it, but you have no choice. Fear cripples and anger festers, and both rob us of true joy. I want Heston to be surrounded by the most joy possible in his short life, and for that he deserves a mother who is filled with joy, especially on his birthday.

I have learned that joy comes out of thankfulness and I am determined to find joy in this day. Sometimes it is in the seemingly negative things where we can find things to be thankful for- we just need to make the choice to look for them. So today I am choosing to find 5 things to be thankful for, on this Heston's 5th birthday.

#1- Heston's smiles and laughs are always genuine.

There is something pure about a smile that is not fake, or even sort of a half a smile effort where you can tell there is nothing joyful behind it. When kids grow up and start to learn, speak, etc, there is a natural progression to a push towards independence that often comes with rolled eyes, attitude, and an ability to be fake. Heston has never reached this level, and the result is a pure, genuine happiness that shows through each and every smile and giggle. Each one is precious, and I try to never take any for granted; to be thankful for each one.

#2- Heston is not a fighter.

From the very first days of life, Heston has been as laid back as they come. I have often wished he had more fight in him so he could learn quicker, heal faster, and protect himself from other children. But the reality is that he doesn't. He will withstand being pushed, kicked, bitten, you name it, and never show signs of anger, retaliation or even frustration. This amazes and challenges me daily. I have realized that it is a lot like Jesus, when He was beaten, tortured, spat on, and crucified. He took it all, without a fight, to bear my sins so that I may spend eternity with Him. For this reminder I am eternally grateful.

#3- Heston doesn't understand.

Heston has regressed quicker than most Sanfilippo children and has been assessed at about a 9 month mental level. While this means he will never speak and not be able to follow commands, within this there is something I can be thankful for. Since Heston doesn't understand enough, I know I will never have to hear him ask me "why?". He is oblivious to what he has, and simply enjoys the simple things. He takes joy from seeing us smile at him, cuddle with him, and have fun with him. For this I am thankful.

#4- The example of other parents walking the same road as me.

Some are driven to action by their determination to fund raise towards a cure for this disease. I admire their efforts immensely. Some exhibit a deep faith in God in the midst of the heartbreak and disappointment that come with Sanfilippo. I am challenged to do the same. I feel like I have been placed on a team with parents of kids with Sanfilippo, all of us working together for our children against this disease. On this team I am inadequate, the weak link, just lucky to make the cut. But I am learning from some of the best, as God continues to shape me and help me to become a better parent.

An example of this happened to me just a couple of weeks ago. I was watching a wonderful video made by the family of a beautiful girl with Sanfilippo named Izzy, in honor of her 13th birthday (a huge milestone with this disease). In the video her mother, Leslie Abernathy Jurado, said the following:

"10 years ago I was desperate to save my child, today sometimes I wonder if she came to save me. If she's the broken girl with the perfect soul here to teach us about how to love, and how to live, and to never take anything for granted."

These words still give me goosebumps. When I first heard them I was brought to me knees in tears. It was like someone was putting into words the yearnings of my heart. My Heston is this to me.

#5- God doesn't always give us a choice.

If God had asked me if I would like to have a child with Sanfilippo Syndrome, there is no way I would have said yes. I would never see this as a good choice, or even fair. But I have learned more about myself and my God, all while gaining new perspective on life in the past couple of years, than I learned from all of my years up to that point combined. While my life would be much easier without Heston, in no way would it be better. Easier doesn't mean better, and while Heston is a lot of work, and I am stretched in ways that hurt almost daily, I am learning so much. I am a better person and a better parent, and I know I still have a long way to go.

When Heston was diagnosed I felt like I didn't deserve to have a child that would require a ton of work, and cause me much heart break. I thought I deserved more. I am realizing now that he is more than I deserve. In the words of an amazing mother, he is teaching me "how to love, and how to live, and to never take anything for granted".

Happy 5th Birthday my dearest Heston. You are a Gift.