When Sarah was four years old a mom who had an adult child with special needs gave me some insight. She said that certain days and events in your child’s life, or the children their same age, will hit you hard. She said to be prepared. It is like grieving the diagnosis all over again. She spoke about high school or college graduations or weddings for friends’ children that are your child’s same age, but as I looked at Sarah and Kendall and thought about their lives together, the time that immediately came to mind that might hit me hard would be their Sweet 16 Birthday.
There is something about the Sweet 16 Birthday. It’s a milestone; it marks a turning point, a definite increase in independence and one step closer to becoming an adult that just makes it extra special. It even has its own name. People don’t say, “Oh, congratulations on your Fabulous 15 birthday!’ or “So, you’re Sensational 17!” No, Sweet 16 is one that gets ‘ooh’s and aah’s’ from strangers when you tell them you are 16.
I remember my Sweet 16 birthday. My parents gave me a butterfly key chain with my name engraved in the center with a set of keys to the family mini-van; wood panel siding and all. IT WAS AWESOME! My Mom and I went to Secretary of State/DMV to get my driver’s license, but not before I spent an hour on my hair. It paid off. My hair was exceptionally poofy (got to love the 80’s hair!) for my photo. (Wait. There was a background to my photo?) IT WAS AWESOME!
Tomorrow the girls will be Sweet 16 and I remembered my friend’s insight so many years ago. To be honest, while it is not hitting me hard, it is a sad reminder for what will never be. With Kendall, this birthday truly is sweet and once she finally gets all her driving hours in, she will be soon sporting her driver’s license. With Sarah, it is just another birthday.
In many ways it’s ‘bittersweet 16’.
I thought Sarah would be higher functioning with more vocabulary at this point in life. There will be no driver’s license or other mark of becoming more independent. No, it seems like we are dealing with the same issues we have been for years. Two weeks ago, I sent out a S.O.S. to you who follow the blog (bless you!!) asking for prayer for her OCD behaviors and I am so thankful to let you know that your prayers are working! Thank you!! Her excessive hand washing has stopped and even the running away has become less. Though, we are looking into a door alarm to let us know if a door is opened. She still has some other OCD issues that are on-going, like spitting into a paper towel or sticking her fingers down her throat to make herself gag. Yet, they have definitely decreased and we are so grateful for your prayers!
Last month, I spoke to another friend who has an adult daughter with lifelong challenges about how there is never an end in sight. Autism, or with her daughter’s disability, will be with us for the rest of our lives. We will never get to a point that we look back and say, “Wow! Glad that is over! I learned a lot, but glad to put that past me.” I know a lot of you, too, have these lifelong or chronic challenges in your lives. You inspire and encourage me as you walk the road God is calling you. I have learned volumes by your example of walking in faith!
It reminds me of a fictional story about God asking a man to push a boulder. The man day after day, year after year, pushed the rock, but it never moved. Not even an inch! The man was tired, frustrated and found his job pointless. He complained to God that he had enough. (I think we’ve all been there!)
God responded, “…And now you come to me, your strength spent, thinking that you have failed. But, is that really so? Look at yourself. Your arms are strong and muscled, your back sinewy and brown, your hands are callused from constant pressure, and your legs have become massive and hard. Through opposition, you have grown much and your abilities now surpass that which you used to have. Yet you haven’t moved the rock. But your calling was to be obedient and to push and to exercise your faith and trust in my wisdom. This you have done. I, my child, will now move the rock.” (‘The Unmoved Rock’, source unknown, Bible.org, 20 Jul 2009).
This life I am walking is not changing but it is certainly changing me!
There are times on this journey it is too much. It is hard and I complain to the Lord in my weariness that I have had enough. I want a break. Yet, I am reminded constantly of how He is my source of strength, how He has provided, been so faithful and shown His loving kindness to me. He has used Autism to soften me where I needed to be soften, crushed me where I needed to be crushed. My faith has been battle tested and stretched more than I thought it could be and it is continuing to be refined. I am not who I was before this journey and while painful at times, it is a good thing.
In fact, it is bittersweet.
“And we know that in all things God works for the good of those of who love Him…” Romans 8:28a