Heartache:

If you are a parent, life is full of milestones to be celebrated. The day your child takes their first steps. The day they lose their first tooth. The day they first ride their bike. And the day they go off to kindergarten. As they get older the celebrations only seem to get bigger and better. The day they get their driver’s license, go to prom, graduate from high school and college, and get married. Yes, these are all beautiful moments to be celebrated, but what if your child isn’t able to hit these milestones. What if instead you are left grieving the loss of these moments in your child’s life and frankly in yours as a parent.

The sting of this is all too fresh for us right now. This year is our daughter’s senior year in high school. A year that should be filled with lots of award ceremonies, homecoming and prom dances, and a big graduation to top it off; has instead been filled with several IEP’s, lots of medical appointments, and a conservatorship hearing to top it off. No, I’m not bitter. I’m just broken hearted. 

I, like so many parents before me, am dealing with the profound and repeated grief that comes again and again as I raise a child with special needs. They call it the “grief cycle”. And while the name may lead one to believe that grief has a single beginning and an ending, the truth is that it can cycle back around again and again, and often does. With each new milestone in life that our daughter does not hit, succeed in, or experience we find that a new wave of grief begins and must be cycled through in order to move forward emotionally. Two years ago, we found ourselves grieving over Abbey’s not being able to get her driver’s license like many of her peers. The pictures on social media were frankly too painful to see, so I found myself completely avoiding social media altogether during that season of life. Then came all the dances for her junior and senior year. And this week it was the high school graduations. I’m truly happy for my friends and family who had high school grads to celebrate, but there is a deep sadness I can’t deny as well. In my life I have often experienced joy mingled with sorrow like this. 

For weeks I was paralyzed not knowing what to do about the graduation thing. We wanted to give our daughter the opportunity to celebrate, but she goes to a specialized school that doesn’t provide a high school graduation ceremony. We thought about taking her to my husband’s high school on their graduation night and performing a small side ceremony. We thought about allot of different options, but nothing seemed to fit. And we also knew that we had to do what worked best for our daughter. Abbey has a diagnosis of autism, and it is extremely difficult for her to participate in celebrations like this. The crowds, the lines, the wait time, the expectations – none of it is doable for her because it all requires a great deal of support to even access it. And even with that support the reality is that at any moment she could become overwhelmed, and we could have a melt down on our hands. The whole thing was just once again too hard and had me stuck in analysis paralysis and grief. 

Hope:

Then hope rushed in. In small, sweet ways God was near and He graciously provided for our tender hearts cry. Last weekend with her grandparents sitting there over our weekly Sunday lunch, I suddenly decided to orchestrate an impromptu ceremony in our backyard. We quickly pulled out her brother’s old high school graduation cap and gown and hemmed it with safety pins. Then we rolled up some paper and tied it with a bow to mimic a diploma. Her brother, who had recently graduated from junior college, put on his cap and gown too. And then the two of them stood there under our patio cover in a mock graduation ceremony. It couldn’t have been more perfect. We made of it what we could, and it was beautiful! God saw us and He saw our need, and, in that moment, He gave us hope.

I have often thought of the story of Hagar in the bible. Hagar was a young servant woman who was all alone in this world and then one day, in a time of her greatest grief and need, God spoke to her. There is something incredibly special about this story as well because it’s said that this is the first time, we hear one of God’s names spoken in the bible (Gen 16). El Roi – the God who sees. I am so thankful that God sees us. He is personal and he tenderly cares for us. So, when I am experiencing the grief cycle once again and my heart aches, I can look up and I remember that I am not alone in this. I have a God who sees and who is with me in the heartache and the pain that we sometimes experience in this life. He brings us hope. He is the Hope.