June 3, 2016- Heston's 6th Birthday

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 don'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 would not be mean to him. Here we are, almost finished the school year, and we continue to be blown away by the love that his peers show him. He is thriving in this environment, where he is welcomed with smiles and comforted with hugs constantly. We realize that these kids will likely outgrow this level of care for him, but for now we just soak it all in along with him, and feel grateful.

2. The care of his teachers and other parents.

I know enough about children to know that even if they show enthusiasm and innocent joy in something, it can be quenched so easily by adults around them. Heston's teachers have led his class with wisdom and by great example. They have showed his classmates how to care for him, and value him. The other parents, even if unsure at the beginning of the year, have accepted and promoted the inclusion of Heston in his class. I have learned so much from them, and I am so thankful for their support.

3. A change in my attitude towards serving.

A couple of years ago I had three kids in diapers with constant responsibilities requiring my physical and mental energy. I often felt trapped in my daily duties, like my skills and energy could be much better spent elsewhere. Today I still have three kids in diapers (don't worry, I'm planning to potty train the twins very soon:) and find myself constantly picking up after kids, cleaning, cooking, etc. My point is that my situation is relatively the same, and yet my attitude has changed.

I have always been a believer that joy and contentment come from within, not from our environment and I am experiencing it now. My attitude towards the needs of Heston in particular have changed dramatically. While I don't do a happy dance every time I have to change him, or clean up the mess after he eats a meal, I don't harbor resentment in the process. I am learning that there is a value in serving him, in taking care of his needs. When I get over myself and my self pity, I discover that when I truly serve, I receive. My love for Heston continues to grow and by removing the barriers of bitterness, the joy flows more freely. Instead of feeling like life is unfair to place such responsibilities on my plate, I feel grateful for the opportunity. Grateful to be his mom, to have this time with him. Even the crappiest of jobs seem like nothing in exchange for being able to just be with him.

4. The gift of help without strings attached.

I have spent most of my life happy to be in a position of self sufficiency. I have been strong enough and healthy enough to not need to ask for help, and usually able to turn it down if offered to me. If I am completely honest, I usually found myself not wanting to accept help mostly because I never wanted to feel indebted to anyone, and have to reciprocate later.

When the twins were born and Heston was only 2, I knew I needed to accept any help that was offered- I could no longer do it all on my own (and maintain my sanity). So I allowed people to help me, knowing I would not be able to help them back. Then when Heston was diagnosed and we started having so many financial needs with him (for example our van) we learned to accept gifts from others, knowing we would likely never be able to repay. Through it all I have discovered that it is okay to be the recipient of gifts and help without feeling burdened to repay. In fact, I have seen that others are more blessed when I find freedom in receiving, allowing them to be blessed by truly giving as it is intended to be.

Learning to find rest in this has been a process, but I am so grateful for it. I am thankful for so many who have been so generous to us, and the peace I am finding in the midst of it. I am hopeful that I am also learning to be a more generous giver, not expecting anything in return for my own giving, and to be able to find the blessing in that.

5. Support for the long haul.

The shock of Heston's diagnosis has subsided, and while we are noticing regression, Heston overall has remained fairly stable over the past year. Naturally we still have days where we are overwhelmed with emotion at the thought of losing him, and find ourselves exhausted. We know that this journey is a long, difficult one and there is always a fear that others will grow tired or bored of us and our situation, and will not want any part of the burden that we carry. So we are especially grateful for those that continue to stand by us. A note of encouragement or reminder of prayers for us helps us to feel supported. Gift cards and financial gifts lighten our financial burden and help us to treat ourselves on a difficult week. We are over 2 years into our journey and still feel very supported by so many different people.

I would like to share just a few examples of support we have received that come to mind (they by no means cover everything).

Do you like to sew and want to be a blessing to someone? Find a special needs parent and offer your services and I promise you that you will be valued. As soon as you have a child out of the normal development cycle, many needed items become either impossible to find, or very expensive. I needed a large change mat for Heston that I could wipe instead of dispose or wash after every change. One would think this would not be too hard to find, but I searched and searched coming up with nothing. I also needed large bibs and became stressed at the price they were when I finally found some online. That is where Donna Unger and the quilting ladies at my church have been invaluable. When I need something now (recently bandanas to help with drool), I simply find Donna, explain what I need, and before I know it, I am handed a bag with whatever I have asked for. To say that this has helped me is an understatement.

There is the Skip Hop company who continues to provide replacement straws for Heston's sippy cups. Since he chew through any straw in no time, this is a huge savings for us, not having to buy new cups all the time. To be able to email them when I need more straws and have them appear in my mailbox within weeks is absolutely wonderful.

It has been so great to have four grade 11 and 12 boys (Zach, Ryan, Jordan and Dawit) each take turns to be Heston's "buddy" at church, which allows him to be a part of the Sunday school class with his peers. What an incredible blessing this has been for all involved.

My last example for today is a wonderful university student named Aubrey. Aubrey volunteered a couple of years ago through the Queen Alexandria "family friend" program to help out our family. She has been coming for 2 hours each week for over 2 years now (completely volunteer) and the twins adore her. She entertains them which allows me to get something accomplished around the house and it is the highlight of my week. Each semester change I give her the "out" if she can no longer keep coming, but somehow she finds time in her schedule and comes right to our house, with incredible energy and such a sweet demeanor. This is a huge blessing to us.

6. Heston is making a difference.

The favorite part of my day is when I get to sit and cuddle with Heston. There is something amazing and special that happens when his body seemingly melts into mine and for those moments, nothing else matters. All becomes well in the world and I am there, in the present, soaking it all in. My life is forever changed because of Heston. No matter how long it is after he is gone, I will still be different, transformed for the better. And as Heston's mother, I get a front row seat at seeing others being changed and blessed as well. I see the smiles on faces of those who know him when I wheel him to greet. I see how excited people are to see him and hear stories about how much they, or their child just loves him, and how special they think he is.

My hope for all of my kids is that they will make a positive difference in peoples' lives. Because of Heston, my perception of what matters in life has been altered dramatically. I am experiencing great beauty in brokenness and a depth of existence that is more powerful than I can express. That boy is some kind of wonderful.

Happy 6th birthday my most precious Heston. You are loved and treasured.