A little piece of heaven

So Mr. Nathan beat us today. No amount of chloral hydrate got him to sleep. So the dreaded, much awaited, much anticipated MRI was not to be.

Unfortunately, I cant’ just reschedule for later next week. We have to get all the authorizations again, get the doctor to send the request, etc etc. Oh well.

I have to admit it was a terrifying, awful ordeal. Nathan gagged and threw up twice after we gave him the chloral hydrate. He was generally happy, but he just couldn’t tolerate the taste of it.

I was a wreck. Nervous, anxious. Honestly, I don’t know how I survived the shunt infection days. I don’t know how I survived any surgeries. Goes to show how spoiled I am, since Nathan hasn’t been hospitalized or hasn’t had any surgeries in 2 years.

Please God please keep it this way.

I had to lay in bed for the rest of the afternoon and evening, I was so messed up, anxious and nervous after the experience.

Anyways, I won’t have to face this for at least another month or two, hopefully by then I won’t remember 🙂

Thanks for everyone who checked in and prayed.

Is tommorrow, Monday, at 2pm.

We managed to find an MRI place that is pretty new and thus not busy. So they will allow us to do the MRI without sedation. We will first see Nathan’s pediatrician, who will give him oral sedation. Then, after 30 minutes, we’ll run accross the parking lot to the MRI place, where hopefully Nathan will be asleep.

They will do the MRI with contrast. Hopefully Nathan will not stir at all during the 45 minute procedure.

Afterwards, they will give me a disc with the MRI images, which I will send out to the Carter Centers and to the neurosurgeon and a couple of other neurologists to take a look at the scans.

Please keep us in your thoughts tommorrow, it’s a BIG day for us. Nathan hasn’t had an MRI since he was 3 months old. So it’s a big event and I am nervous and scared. A prayed would be appreciated.

I just finished reading a powerful book, called Through every Storm written by Sharlene Maclaren.

The book talks about what happens to a couple after their only daughter dies of a tragic accident. It talks about how the father and mother react differently, the stages of grief they experience, all of the ways they are impacted by such a tragic loss. It talks about their journey from feeling broken internally and externally, to finding peace and joy. In the end, they found their peace in God, in faith, and Maclaren talks about their individual journey to God and how God shaped and helped them grow. It really is a beautiful book, and I highly reccommend it to everyone, especially parents of SN kids.

I found myself riveted as I was reading it. Because although I’ve never lost a child, I felt I completely related to what the couple was going through. I understood how they felt.

And the more I thought about it, the more I realized – I have lost a child. This is one aspect of having a severely handicapped child that is confusing and often ignored. It’s spoken of flippantly, how we feel our child has been “switched”, how we feel we left on a trip to Italy and found ourselves in Holland.

But really – we do lose a child – we lose the image and all the deep seated beliefs associated with the typical child we all dreamt of having. That child dies, and in his/her place, we find ourselves with a much different child. This is true for those of us who had a child damaged in the womb, or a child damaged at birth, or a child damaged by illness or accident after birth. In a way the experience is even more bitter, more jarring, more painful. Because not only do you lose a child but you find you can’t actually grieve because you still have a child in front of you, a child that needs you more than ever. A child who needs you to be strong. A child who needs your love.

Without support, without guidance, you have to move past all the beliefs about the world that have been instillled in you since birth, to find love and courage deep within you. And if you grieve you’re told – why are you crying? Your child is alive. Your child needs you. Your child is different, but your child is your child and needs your love.

And the thing is, it takes time. You find yourself having to completely shift paradigms. Whereas your entire life you felt that the earth revolved around the sun, you all of a sudden discover that the earth revolves around a wooden donkey and you have to learn to live with this reality. You don’t stop loving your child for a single moment. But as your world realigns you have to grieve for the child you lost, learn to appreciate the child in your arms, learn that your child doesn’t have to be like anyone else to be special, to be lovable, to have a happy joyful life. And all through this journey you have to walk mostly alone, as no one really understands, not even the people close to you, not even other parents who have kids with special needs, as everyone’s journey is different, and we all have to come to these deep seated realizations on our own time. I can talk to someone who’s just had a child with holoprosencephaly and speak until I’m blue in the face – but they will hear bits and pieces and go through their own journey and their own realizations. We can’t experience life for others or tell them how to feel and act.

So why do I write this? Because I wish someone had told me it was okay to grieve when Nathan was really little. I wish someone had held my hand while I cried at the loss of the child I’d dreamed of, the perfect, healthy, typical child. I wish someone had understood that it wasn’t that I didn’t love Nathan, it was that I needed to change my entire worldview to be able to accept and appreciate him the way he deserves to be accepted and appreciated. My fear was that if I talked of these feelings, others would’ve thought I didn’t love the child in front of me. I wish somoene could’ve understood that I loved the child in front of me with all my heart from the minute of his conception – but it didn’t stop me from grieving for the child I lost. I wish I’d had someone to whom I could’ve said, there were nights when Nathan was an infant that I wished he had died like all the doctors said he would so I could’ve spared him all the pain that I thought would follow in his life. I wish someone had said to me – his life is precious, and being disabled doesn’t mean he is going to lead a miserable life. But honestly, no one told me any different. How was I to know the sheer happiness and joy that this journey would bring me? This isn’t what you see when you see a child in a wheelchair. Even if you talk to a parent of a disabled child, and they tell you about the joy they have found in their journey, deep down you think, poor them, they’ve found a way to live with their sorrow, they’ve found a way to justify their pain and make it all seem okay. And deep down you can’t believe that they really feel they’ve been given the most stunning, amazing, breathtaking, beautiful diamond that exists all over the world. It’s not perfect, it has blemishes. But the child’s sheer innocence and love drives you to see beyond your own misconceptions and after every crash you keep changing and changing because they need you to.

And you find yourselves so changed after some time that all you can think about is how grateful you are to the child in your arms, even if he’s not the one you dreamed of. Because you find that the child in your arms has given you much more than you could’ve even dreamed of.

And I hope all of us, over time, can share our journey to others so they don’t have to go through what we did. The more we find peace and joy and share this with others, the more others will know they are in for quite a journey, sometimes blissful, sometimes excruciating, but always beautiful.