A New Normal

I started a blog about seven years ago I titled "Ezekiel's Wheel'. (Just looked for it, you won't find it on a google search) I published one or two articles on it, perhaps, around the time this picture was taken. Looking back, I con honestly say we had NO idea what we were in for with this kid. Blogging was a project I could hang on to for a New York minute once we received our first diagnosis. As soon as I started the blog, I had to drop the project.

I remember that at the time this picture was taken, I had an idea that things would eventually settle down and get back to a sense of 'normal'. Let me say now with seven years of parenting under my belt, there is no 'normal' after you start having children. Props to ALL moms who love their kids and do it well. But especially, over the weeks, months, and years following a child's diagnosis, or several diagnosis, whatever 'normal' means to you, or meant to you, or you believed it would be...all 'normal' becomes a fleeting memory. This is one of many observations I have made since starting down this adventure with special needs.

Here, Zeke was between 3 and 6 months old. I note that I still look young, tan, and hopeful. I'm put together, but not without effort. Despite my glow, I'm exhausted and holding on to a baby who is screaming his lungs out, and can not be consoled. At this point, I have no idea that this is not a phase that will pass. Or, that this could be one of the symptoms of another diagnosis we would receive a few years down the road. Matt and I are happily oblivious in this picture, which is part of the reason I chose it. We have already been told we have delivered a blind baby and I am now thinking romantically about how I loved Little House on the Prairie's Mary Ingalls and have read books about Helen Keller, so we should be okay?

Zeke's diagnosis for bilateral congenital cateracts placed us on the road to a surgery when he was 6 monthos old that would garner a second diagnosis - that of aphakic glaucoma (with several more diagnosis to come down the road). We were told that our Zeke would have the lenses removed from his eyes, that he would wear glasses, and we believed that from this point forward, we would be able to move on to our 'normal'. That's probably why I look so relaxed! I don't want to break it to the girl in this picture, and I know for a fact that no one else did - because no one who might have known better than me, warned me - That 'normal' never arrived.

I reached for it for a long time. I worked hard for it. Like, really, really hard. I kept trying to bring balance back to the imbalance. I looked for the cause of the perpetual hardness of our lives and I kept trying to resolve it. After the initial diagnosis, and even several following, I held on to hope that we would go back to a normal..but the balance of life that I had before special needs still eludes me today. I've given over to the imbalance and learned to ride it like a surfer rides a wave. In between the hard, I tread water. I'm always waiting for the big wave in the ocean of a life with special needs to come and topple over my life. It will inevitably come. Sometimes I handle the wave well, and sometimes still...I crash.

Looking at this picture is bittersweet. I want to hug the girl in the picture. I want to break the news to her, and then hold her while she cries, if I can get her to give up her vision of 'normal' and realize she's already well on the path away from normal, and there is no going back.

I would take her by the shoulders, stare into her eyes, stand nose to nose, and say to her 'Your life is taking a different path girl, than what you planned. You'll survive hard. You'll get better at it. It will be okay. You'll learn so much. You'll have an adventure with your wonderkids. And eventually, after you grieve, you will be grateful'.

For all the special needs mamas out there, all the moms with a diagnosis, all the moms dealing with perpetual hard because of a child's diagnosis I want to say the same. 'Your life is taking a different path girl, than what you planned. You'll survive hard. You'll get better at it. It will be okay. You'll learn so much. You'll have an adventure with your wonderkids. And eventually, after you grieve, you will be grateful'.

On this adventure, I have met moms who handle diagnosis bravely and fiercely without a chink in the armor, I'm glad for them. But it's not been that for me. Instead of brave (as I imagined I might have been) I have experienced a special kind of broken, a sorrow, a pain that lives just under the joy I have of being a mother. More often it pulls me in that pushes me out. This particular pain is the pain of not being able to count on the end of the story. It is the grief of the not knowing. The question of 'what if' has a million different contexts and they are all specific questions, relevant questions, and they all live and breathe unanswered within me at any moment while I'm doing the daily that all moms do - the talking, the cleaning, the cooking, the laundry, the working, the arranging. Underneath all of the activity is a doorway to my grief. 'What if' it was something we did wrong, 'What if' he loses his vision completely, 'What if' our finances, 'What if' the surgery goes wrong, 'What if' there's not a place for him...what if, what if, what if...

For me, life as a special needs mom has been an induction into the 'sorority that I never would have chosen'. In this new life, I am allergic other's need of me to be happier, more positive, and to give them a happy ending. I want to say to those people, 'There is no happy end' to this. What I mean to say is, you need a 'happy ending', for this story, I do not. You are the one hanging on to your sense of normal, please don't squeeze me into your 'normal' box. I am learning to live with out normal.

On the other side of that induction into this exclusive sorority, I have also experienced the joy of connection, of unexpected surprises, and an adventure I never could have dreamed up. Those joys are as vivid as the sorrow.

These days, I challenge myself to accept my new normal as not being normal. I am working on developing a faith that embraces brokenness instead of strength. Acceptance is a huge part of that. Accepting that every life worth living has a level of 'what if' to bear through. Accepting that I will probably be missed and misunderstood, often. Perhaps life as a parent of a special needs kid has just made me more aware. For that, I'm grateful. On the other side of normal, on the side of acceptance, I'm grateful to have found myself on a journey I wouldn't have chosen.

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Scripture

Jeremiah 29:11 'For I know the plans I have for you, says the Lord. Plans to prosper and not to harm you, plans to give you a future and a hope'

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Parent's Devotional

Questions for thought:

1. Think about the moment you experienced first knowing or understanding your child's diagnosis. Do you have a picture (literal or figurative) that reminds you of that time?

2. Looking back, what do you know now (that you may not have realized then) about the meaning of the diagnosis and it's impact on:

-Your life

-Your relationships

-Your expectations or vision for your future

3. If you've experienced grief, what has that looked like?

4. What questions do you have that remain unanswered?

5. Have you felt missed and misunderstood as you've tried to explain the impact of the diagnosis on your life and in your heart to friends, family, and community? How about specialists, therapists, doctors, and teachers? Why or why not?

6. If you could go back in time, what encouragement or direction or insight would you go back and tell yourself at the moment you discovered your child's diagnosis? What would you have wanted to hear?

7. How long did it take for acceptance to begin to show up in your life? Or are you still wrestling? Describe your journey to and with acceptance.