I went for a long drive today (Ok, it was 20 minutes, but that IS a long drive where I live LOL) and I was by myself which is a rarity. I was going out to Target to buy Joshua some things for his "big boy bed" and he stayed home with Rod. And while I was driving, I was thinking about things and how I feel like I have reached a point of acceptance with all of this, and that is a really good thing.
I read things that other HIE parents write on the forums I am apart of and I can hear their desperation and their fear coming through in their comments, and I understand, I have been there, that used to be me... But it's not anymore and it really feels better to be on this side.
Does that mean that I don't worry about the future anymore? No, of course it doesn't. We still have so many unknowns in the road ahead and that can be scary. The difference between now and then, is that I think I have accepted this journey for what it is. I have recognised that many things are just out of my control and that my energies are better focussed on things I can change (or might be able to) rather than the things I can't.
For example, when Joshua's head circumference was not growing as fast as expected in the early months, I used to measure his head obsessively. Willing it to grow, frustrated that it wasn't, freaking out about the dire consequences that this could have. I put so much time and energy into obsessing about something that I could do nothing about. Now, I accept that my child has a small head. I accept there is nothing I can do about it. Does that mean I never worry about it? No.. I still worry a little bit.. more about things like whether or not other children are going to tease him for having a small head, but not about the big horrible words that pop up in google, like "Mental Retardation". Microcephaly? *Shrug* No big deal. Just a label.
It used to stress me out that Joshua was "failing" his developmental assessments. I desperately wanted him to "pass" and to be "normal". Well, he is not. There is lots of stuff he can't do that he should. And despite that, he is still an awesome kid. As Rod says, "there is still nothing that we know for sure that he will never do". Joshua is just writing his own book rather than following all these "Ages and Stages" mumbo jumbo. The key word in this book is PROGRESS. Consistent progress, slow and steady progress... it is far more important than being able to tick all the boxes at the "right" time.
In the early days, I used to feel like everything was going to be ok. Now, I have come to realise that everything IS ok. It just isn't the ok that I was thinking about then. Maybe it was positive thinking, maybe it was denial, but I used to tell myself that Joshua was going to be perfectly fine, he was going to be "normal". Now I know that he isn't "normal", he is not going to be one of these children with HIE that make a complete recovery and live happily ever after. And that is OK. We are making a new kind of normal. And it is not that bad! Sometimes it feels like we are neither here nor there. Joshua is not severely affected so we don't fit in with those folks, and yet, although not severe, he has still been significantly affected, so we don't really fit in with the "My miracle child is meeting all their milestones" group either. I don't mean that in a nasty way either, I am just saying it like it is. Many people seem to believe that the only good outcome for a HIE child is the one I just mentioned, where the child makes a full recovery and suffers from no lasting deficits. I want people to know that is not true. I want people to know that you can have a child with microcephaly, you can have a child with developmental delays and that it is not the end of the world. Sometimes I want to shake people and say "Look at my kid! He is not perfect, but he is perfect to me!" Don't act like this is a terrible place to be, because it isn't. Look at this face.... Life doesn't get any better than this!
I am going to finish this up now with a little quote from a piece I recently read on facebook...
I love my child with an intensity that you can only imagine.If on a given day I am tired or cross with him, listen to me, lighten my burden, but do not judge me.Celebrate with me, rejoice in who he is and who he will become...but forgive me if from time to time I shed a tear for who he might have been.