The thing that I always find hard to wrap my head around whenever there is a tragedy, loss, traumatic event., etc., is that life goes on.  While we mourn, the world swirls on around us unaware and unstopping in it’s trajectory.  And so it has been with us – even as I type this, my daughter Annabeth is sitting nearby watching a Little Einsteins video.  “Don’t cry Daddy” she says, as if to forestall what she now connects to my computer usage.  “Mommy loves you, so don’t cry”.

Last week both of our two little girls had their birthdays.  Emmaline and Annabeth are “Irish twins,” meaning that they are under a year apart.  On Annabeth’s birthday, she asked me how old she was.  “Four years old!”  “How old is Emmaline?” she asked.   “Four,”  I told her.  Her eyebrows wrinkled in consternation as she thought about this.  Then I explained that in just a few days her sister would turn five.  For some reason, that seemed to make it better.  So, even though we were having a rather difficult time processing the recent diagnosis of our daughter Emmaline with Rett Syndrome, there were still birthdays to celebrate, work schedules to be arranged, letters to be written to our missionary son and the ferrying around of Taylor to her various school and extracurricular activities.  All of this however, left me feeling like I was riding an erratic roller coaster, with my emotions going up and down with very little warning.  One moment I would feel almost ok, and the next would find myself shouting words I haven’t said in years.  I feel like I have a very tenuous grip on my emotions.  Yet another snowstorm did not help.  Do not ever buy a corner property, my friends, if you live in a snow state.  Twice the amount of walks to shovel.

The snow might look beautiful, but it is a demon in disguise!

We celebrated Annabeth’s birthday with a homemade chocolate cake (“I loooovvve chocolate cake!!” she exclaims.)  Annabeth despises dolls, but loves cars, trucks and trains, so we made her a cake based on the movie “Cars,” and decorated it with a couple of cars that she had not yet managed to convince us to acquire.

She blew out her own candles – and no spit!

For months now, we have been trying to convince Annabeth that it was well past time that she started using the ‘potty’.  She has been more than resistant to the idea.  Having an older sibling who is still in diapers does not help the cause.  After a couple of failed ( and very messy) attempts, we had instead resorted to telling her that when she turned four, that would be it.  No more diapers.  Probably not the best week to undertake such an attempt, in hindsight.  But with what felt like the world crashing in on us, I just wanted to feel we could do something right.  And so as she turned 4, the diapers came off.  The first few days were rough.  Annabeth does not have a weak will.  After several puddles on the floor, we were getting a little exasperated.  One day, after she had run in to the bathroom and shut the door, I followed to see what was ‘going on’.  I found her  kneeling down by a brown ‘deposit’ on the floor trying to shove it into the toilet plunger.  Some of my friends may see the connection here:  Annabeth has an affinity for toilet plungers and is constantly trying to sneak them out of the bathroom to play with them.  For example, there was the “incident” where I found her holed up in the downstairs shower watching the iPad with plunger in hand – using it as a bowl to hold her food.  Thankfully, as of this writing, I can say that Annabeth seems to finally be on board.  In fact, while at the customer service counter at the store the other day, she started exclaiming, “the poo is coming, the poo is coming!”  “Do I have underwear on?!”  We had deprived her of underwear in our efforts to make it as ‘uncomfortable’ as possible if she chose to not use the toilet.

Emmaline’s birthday reminded me of just how difficult her challenges can be.  There are not a lot of toys that Emm, is interested in.  She does however, tend to like music quite a bit, and we have managed to find some toys such as the Leapfrog Scout, that she really likes.  I baked her a rainbow cake and we sang her happy birthday, which she laughed in delight at.  But as we started to help her open her presents, they scared her and it all became too overwhelming for her.  She started to cry and scream – and that was the end of that.  She’s had about a week now to let the new toys acclimate.  We set them around the house – and she eventually will start to cautiously approach them – and is starting now to play with them without getting frightened.  (I’ve posted some pictures of the rainbow cake – it’s rather easy to make.  Just mix your cake mix, divide it into 6 equal parts.  Brightly color those parts, and then pour one color into the center of the pan, followed by the next color into the center as well  – and so forth.  Then bake it, decorate it, and you’re done.)

Batter poured and ready to bake.

The finished product.

Perhaps my greatest challenge in all of this – is placing my trust in God and figuring out how to let go of my fear. A couple of nights ago, I was sitting in bed next to Kristin reading Sophie Kinsella’s “Shopaholic to the Stars”.  (I can see why these books are popular – totally mindless – which is what I have resorted to.)  Suddenly, we heard a moaning scream coming from the girls room.  At first it sounded like another one of Annabeth’s nightmares.  I rushed in to to calm her down, to find that instead it was Emmaline having a seizure.  She has been having seizures for a little over a year now, but this one was different.  She has never screamed through one before.  She was clearly in pain – aware – and scared.  I desperately tried to hold her and help her stop – even though I know that’s not how these things work.  When it stopped, I was so upset that I wanted to scream at God, “What the hell are you doing to my daughter!?”  Instead, all I could really do was slump down next to her bed and cry.  Ever since getting her diagnosis, I have been terrified that she might still be getting worse and that rather than being in a plateau phase which this disorder can often do for many years, that she might still be degenerating.  I have watched everything she does through a different lens – one of fear.  She presents on the milder spectrum of this disorder, since about half of all girls with Retts cannot walk at all – and many cannot even feed themselves.  It is not uncommon however, for these children to have acquired these skills and then to lose them during a degenerative phase.  That has been my fear with Emm – that she might still lose those skills that she has gained.  However, we did have a bit of ‘good’ news this week when we got the specifics of her genetic mutation.  Retts, is caused by a deletion in the MECP2 gene – with various types of deletions possible.  Emmaline’s specific deletion is rare among those with Rett Syndrome affecting about 4% of those who have the disorder.  Many children with her specific deletion have ‘milder’ symptoms.  It’s a little crazy to feel that one is “lucky” that it isn’t worse.  Honestly though, I almost feel as if it is God saying to me, “I know that this is incredibly difficult for you – and I know that your heart could not have handled more.  But this you can, as difficult as it is going to be.”  That being said, I don’t know as God “gave” this trial to us – as it simply happened as a result of living in a less than perfect world.  I am not privy to His ways – and therefore do not know when He gives us trials, when He allows trials to come, or when he modifies one that we are having or that is coming our way so that we can withstand it – and learn what we specifically need to learn.  As angry as I have been, I do still feel that He cares – and that somehow, in the end, it will be ok.  I now just have to figure out how to keep that perspective in the coming years when those difficult screaming moments come.