Hugs for Heston

I like to plan, I like to be prepared.  I am that person who likes to have the Christmas presents bought and wrapped before the beginning of December.  I liked the feeling of having the clothes organized, the diapers and supplies bought and all ready well in advance of my new expectant babies.  Knowing this about myself it doesn't surprise me that I have been feeling lately that it is time to get things planned, ready if you will, for Heston's passing.  I don't like to scramble at the last minute, so if there are things I can do, decide or have ready ahead of time, I want to. But this sort of planning hurts- it is so hard.  At times it just feels weird and at times just the thought of it makes it hard to breathe.  Sitting in the funeral office, surrounded by urns and casket samples felt so weird and almost like I was in some sort of bizarre dream.  Filling out forms with some of the information needed for a death certificate I found myself almost ...

As Heston turns 8 today, I take a look back at the past year. What a year as we faced such difficulties with our boy and have come so far. It is time to take  a moment and share 8 things that I am thankful for as we celebrate this day. 1. Today: There were times this year when we weren't sure if Heston would make it to another birthday. We are so grateful he is here with us, and we can have this day where we can celebrate him and another year of his life. 2. Canuck Place: I will never forget the feeling driving into Canuck Place in January. Heston and I were in the back of an ambulance as we were transfered from our home in Victoria. We had spent 4 weeks in the hospital with Heston (2 of which he was fully sedated), followed by 2 weeks at home and to say I was stressed would be an understatement. I had been spending 24 hours a day at Heston's side- suctioning his saliva after every cough, trying my best to keep him comfortable. But the reality was he was strugglin...

Today my beautiful, precious son Heston is turning 7. As per tradition, and with a spirit of true gratitude, I am sharing 7 things that I am thankful for. 1.  Community Today a friend of ours (Michelle Alexander), along with Heston's school community is organizing a birthday party and fundraiser for him. They are using our church facility to host the event and many from our church are helping out and attending the party. It is so great to see people come together for our boy. They say it takes a village to raise a child, and a special boy like Heston takes even more. We are so blessed to be surrounded by such support and it makes me proud, so very proud of our community. Proud that they are embracing a boy like Heston and are willing to not only support, but celebrate him and his life. 2. Heston's support team Heston has a pediatrician, family doctor, MPS specialist, neurologist, orthopedic surgeon, Ear Nose and Throat specialist and cardiologist, all of which he ...

Many people have been asking how I am doing with Heston's new g-tube. I have to admit that the few days leading up to the surgery were difficult for me. I had known for some time that it was the plan, and I felt confident that we were making the right decision to go ahead with the procedure, and yet I felt sad. It was as if we have a certain number of boxes, representing stages that Heston has left in his life, and we were checking off a big one. Normally I love checking  things off lists, especially "to do" lists. But not this time. This was a deliberate reminder that we were one step closer to losing him. Heston's surgery went smoothly, without any complications and his recovery has been amazing. At first the whole process of feeding him with the g-tube was overwhelming. There seemed to be so many steps and I was frustrated to add yet another tedious, time consuming role to my care of him. But now that I have it figured out, and the steps are becoming automati...

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...

Today Heston turns 6 years old. I have read a lot of posts from other Sanfilippo moms about dreading birthdays of their children. I have told myself that I do n't need to go there- I can rise above and have a positive attitude whatever age Heston turns. But this past year I have watched as Sanfilippo children I follow have passed away at 9 to 12 years old, and somehow Heston turning 6 seems so much closer to that, than he did at age 5. I start to question if I have made the most of my time with him this past year, or if I have wasted it. It does not take long before I can spiral into such sadness and regret. I have found that the best way to battle the heaviness of despair is with a thankful heart. So as I started last year, for this, Heston's 6th birthday, I will share 6 things I am thankful for. 1. The love of Heston's classmates. A year ago we were apprehensive about Heston starting school. We were hopeful that he would tolerate it, and that his classmates woul...

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 neg...