Fear and (self) loathing

I realise all parents live with a certain degree of fear. I just wasn't prepared for the level of permanent anxiety that feels like it pervades every aspect of my life when I became Emily's parent.
Since Emily's diagnosis of Epilepsy, I feel like a crazy person waiting at a phone for the next bad call to come through.

Dramatic, I know, I am writing this at an all time low - hardly any sleep for nights, and hating myself because she is currently out with her grandparents, and I find myself watching the clock, counting down the minutes until her return. My countdown is based on borderline dread that when she gets back, my overwhelming sense of fear walks through the door with her. And along with that, any sense calm, freedom and peace of mind.

As a parent you are responsible for your child's life, but as a parent of a non verbal special needs child this responsibility feels like it is ten-fold. Emily is having breakthrough seizures, and whenever something like this happens, I feel like there should've been something I should have done differently. It makes me call into question all the decisions I make on her behalf. It makes me call into question my fitness as her parent, guardian, spokesperson and fighter-of-battles. Basically, I feel like I have utterly failed and let her down.

I know I love her and that I do all I can for her but am I doing enough?
Will it ever be enough?

This feeling too will pass but my determination to make her life the best it can be for her, never will.

Answers

The question could be why?

Why Emily? 

Why us?

And the only answer I can live with is that she chose us. There was always going to be an Emily Bean. So she chose to be our Emily Bean. 

Walking this road with her brings so much joy. But on nights like tonight,  sitting next to her as she sleeps in her hospital bed, just brings sadness and anger. And more 'whys'.

One of the biggest lessons I am learning is that a lot of my questions can't be answered. And if you know me, you know how this does not work for me. I am a problem solver. I keep at something until I have fixed it or at least made it better than when I found it. But I can't solve or fix what is wrong with Emily. And this breaks my heart. And on some days, breaks me. 

Okay,  so if Emily chose us, and I accept that 'fixing her' is not what I should be doing, then am I asking the wrong question? 

Maybe my question should be 'is she happy' or 'is she loved' or 'are we doing all we can'?

And, the answer is yes. 

And I can happily live with that. 

Walking tall

The day has finally arrived - Emily Bean is walking!

After much physio and her determination to do whatever she pleases, Emily amazed us all (once again - we really should be so used to this by now) and is slowly but surely walking on her own.

It is, as with anything in life, as soon as you stop trying so hard and trust, things just seem to fall into place.  Not that I had given up on her ever walking, but more that I was torn between hoping for it on the one hand and trying to protect myself (and Emily) from disappointment on the other.  I know this sound ridiculous but when you have a child that doesn't develop on the normal curve, no one can tell you what your expectations should be.  So you keep believing and keep trying but also, in the back of your mind, you quietly brace yourself for the possibility that maybe, maybe you might be asking too much of this precious person.

Fortunately, we have not reached the place where we have to step back and ask ourselves if it is time to stop hoping - and if Emily's achievements so far are anything to go by - we never will.  

She will always be exactly what she should be, and we will always love her with all our hearts.

Frustration and the fruits thereof...

I am, and remain amazed at how difficult it seems to be to get accurate info on what to expect for our road ahead with Emily's cleft.  It has been this way from the start.  I was warned to stay away from searching the internet as it can be a very scary place when looking up cleft lip and palate.  But then, where does one go? It was also one of the reasons I started this blog.  So, in staying true to this, I am rededicating my promise to post any valuable insights I might have into our experience with raising a child with a cleft lip and palate, and hopefully, this will make someone else's journey a little bit smoother.

Progress

Emily is getting stronger every day.  It is such a joy to hear people say that they can see her progress - I suppose it is the perspective that comes with not seeing her every day.  I have to admit that she does feel heavier! It feels like decades ago that it took 45 minutes to feed her 40ml of formula and that she weighed only 4kgs, when in actual fact it was less than two years ago.  I can still feel a clamp on my heart when I think of her tiny, skinny body and our daily struggle and anguish when it came to feeding her.  It is so hard to let go of the sadness and focus on all the good that is around us now, but, I promise, this is my daily mantra.  Emily makes me so happy.  So, every day, we do our exercises, continue our progress, and enjoy every moment of it.

Big head, but bigger potential

We saw a professor in genetics last week to see if she could help identify any syndromes at play with our darling Emily Bean.  Once again, Emily has the medical community confused.  The professor has never (in her many years) seen a baby with a cleft palate and an enlarged corpus callusum (white area between lobes of brain that facilitates communication between the lobes). Emily Bean is (as I have always said) a medical marvel.
The Prof reported back, and had the following to say:
"I have been going through literature and found an article that stated that about 6 other children in the world have something similar to Emily with some having the same big head and all having the enlarged corpus callosum and some having the same problem with brain development with 1 person having a cleft palate. All had very poor motor development and some poor growth.

One of the cases had a full workup with the tests we talked about and everything else was negative. So we do not know what causes the condition and whether this is heritable or not. No previous case had an affected sibling up to now.

In summary- we have a sort of name for it—Megencephaly, mega corpus callosum and poor motor development. Therefore it means: no fault of yours caused this, but we do not know the possibility for repeat."

So, plan going forward is to keep on with her physio, add an Occupational Therapist to it, both are NDT (neuro-developmental trained).  They use her exercises to help retrain her neural pathways.  And whatever happens from there, was clearly meant to be!

Nothing will ever change what Emily is, the best thing in our lives!

Perspective

I received the most random advice from my pharmacist (of all people) over the weekend which has given me a lot to think about.  He said that what happens in your life and the things you go through don't change, what has to change is your perception of these events.  If you can change your perspective, you open your world to a new dimension and life takes on a whole new meaning.  Needless to say, the queue behind us at the Pharmacy were hoping his perception of an acceptable waiting time for them would change... But what an angel!  The right advice at the right time (and I have to stress here that the timing has to be spot on) makes a world of difference.
So, when the geneticist's office phoned this morning to reschedule Emily's appointment AGAIN,  I have decided that it is to give me the time to be more positive and not so fearful about it.
It is time to take back control of my responses and reactions to the events in my life and not let every 'disappointment' knock me down.  I cannot control what happens in my life.  What I have control over is the way I let it affect me. And from today, through conscious effort, things will be different.  And better.  If for no other reason, than the fact that Emily deserves it.  Taking care of yourself so that your child gets the best extends beyond the time that they are inside of you.  For the rest of your time with them, taking the best care of yourself teaches them that loving yourself is the only and best way to truly be able to love those around you. 

I love you, my darling blessing of a child.