It’s been a while since my last post, though I have had a thousand thoughts I wanted to write down. Somehow I feel that even though this is my own blog and I can write whatever I want in it, I want it to be interesting to others who may subscribe to it or stumble on it in the great blogosphere. Not that I don’t think what I have had to say thus far isn’t interesting, but I suppose I don’t want to harp on the same old song and dance.
To be honest, I’ve been in the “ebb” part of the ebb and flow of grief – the part where grief pauses and takes hold of my heart. There have been many days and nights where I’ve simply allowed sadness and frustration and fatigue and pity to take over. Even though that truly is part of my life, it’s not always how it can best encourage others who may be going through the same thing. I like to think that when I write, it is something great and profound that ministers to the hearts of the few who read it. The reality is probably less impacting as I hope, but I write because it is often what ministers to my own heart. Somehow the words on the screen, though typed with my own fingers, become something apart from myself that speak back to me.
You might not think special needs or autism, even higher functioning autism, is really that big of a deal. That’s okay. Maybe it’s not. But there is something in your life that is a big deal. It’s different for different people. For me and many others, having a child in the world of special needs is our big deal. One of the biggest challenges is the constant struggle of letting go. We’re not just letting go of our kids as they get older like every other parent, we are also letting go of certain expectations and notions of what having kids would be like. Perhaps some parents thought their son would go to T-ball and be in Little League or that their daughter would be in ballet, or maybe be involved in music and arts, but a physical disability prevents such dreams. For some parents, simple communication is no longer an option and learning sign language replaces using words. Still others will wonder if their child will ever be able to add simple numbers or learn how to read because of a mental disability. Will our children have friends? Will they know how to laugh appropriately and tell jokes? Will they understand our love for them and be able to love us back? Will they ever drive? Go to college? Graduate? Establish a career, or even simply hold a job? Will they marry and have children? These are questions I think every parent asks, but they are more initmidating questions for the parents of children with special needs. The answers hold still more frustrations when our expectations – or our children’s – are not met, or they are met differently than we thought or wanted. All of this brings about grief. We grieve the “normal” life we thought we’d have, whatever that means to each of us, that will no longer be ours after the discovery of our child’s special needs. We’re forced to find a new “normal” for our family while we watch the world of “normal” pass us by in a parallel world.
This post is not about describing the grief process, or grieving aloud over my son’s life or our life in the new “normal” we are blazing for ourselves. Rather, I pray it is a testimony of the greatness and sweetness of being a parent. I grieve, yes. But as I was reminded this week, I also rejoice. There are times when all I can do is cry and say, “It hurts.” I have no words, I’m just sad.
As an adult, I like to think I’m strong and that I’m a big girl and I don’t need my mommy. But in those moments (and others too), sometimes I just want to hear my mom’s voice. I have usually exhausted my husband by this point (though he tells me it’s impossible), but when the tears just don’t end, I will retreat back to my 7 year old self and crawl back into my mom’s lap by calling and crying to her. She’s pretty great about it. She doesn’t audibly sigh as if I’m bothering her, like, “Again? She’s calling again?” Maybe she thinks it, but she doesn’t let me know it if she does. She simply says, “I know, I’m sorry.” She just lets me cry. She’ll ask questions to see what’s going on and will simply listen. But then she reminds me of the really great things about Sam.
This past week, I was really wrestling with the numbers of all of Sam’s recent test results from school. His IQ was vastly different (and much lower) than his last test when he was diagnosed 4 years ago. I was baffled. I didn’t understand how it went from 127 down to an 86. The 20 or more numbers of the various tests and subtests were swirling about in my head, all screaming at me, “He still has autism!” Even though I know it’s not going to go away, reading the summary reports was like getting the diagnosis all over again. All of a sudden, all the good things I heard from his teachers were nowhere in the results of these tests and questionnaires. Just the negative. It was actually an answer to prayer because in order for him to continue to receive the necessary services, his disability code had to change on his IEP from developmental delay to autism. The good news is that his code is changing to autism because all the results show his symptoms are still congruent with that of autism. The bad news is… the results show he has autism.
Mom asked me if I was please with his success this past year, if I saw progress. I had to think about the great strides he really has made. When I recounted them to her, she told me to think about those things and reminded me the tests are for a particular reason – to get him the services he needs. It’s not to point out all his challenges in order to rub it in that he’s different. It’s for his good. Yet, what is meant for his good is just painful to go through as his mom. Those numbers sting my eyes and bring a lump to my throat.
Isn’t that how anything in life goes? Most of what is for our good is painful. Exercise is for our good, but it’s painful. Discipline is for our good, but painful. Healthy eating is for our good, though sometimes not very tasty. Medicine can bring about terrible pains and side effects, but it is for our good. Shots hurt for the moment, but prevent terrible diseases in the long run.
The long run… I’m reminded of James – “Consider it pure joy my brothers when you encounter trials of various kinds because you know the testing of your faith develops perseverance.” The hard thing about perseverance is that it’s not a one-time thing. Much like grief, it can’t be dealt with once and immediately accomplished. Perseverance implies and involves time – often, a lifetime. James again says, “Behold, we consider those blessed who remained steadfast. You have heard of the steadfastness of Job, and you have seen the purpose of the Lord, how the Lord is compassionate and merciful.” I must persevere in hope – rejoicing in the compassion and mercy of the Lord in the work He is doing in my son’s life.
A favorite passage of mine is Romans 5:3-5, “…we rejoice in our sufferings, knowing that suffering produces endurance, endurance produces character, and character produces hope, and hope does not disappoint because the love of God has been poured into our hearts through the Holy Spirit who has been given to us.” Autism causes much suffering. But the suffering it produces causes me to persevere in it until joy is felt in my soul. It is then that awful word that I hate and despise is able to somehow rest side by side with what I know is the goodness of God. With each visit from grief, God is growing me because I am dependent on Him to grant grace through hope and contentment. And I know His hope will not disappoint me. I will continue to grieve, but, I will also continue to hope in the good that He has done and will continue to do in the precious life of my son and in my own heart. For every one hundred different reasons to grieve, there are another 100 reasons to rejoice.
As my mom said after asking me to think back on much of Sam’s progress, “Forget about the numbers. That’s a reason to praise the Lord!” Whatever the “numbers” in your life, forget about ’em. They’re just numbers anyway. There are reasons – if only one – to praise the Lord. What is it? Persevere in that.