Remembering Ashley

During Ashley's first hospital admission, when she was two months old, she had her first smiles...

We had all the tests done at that time.  CT scans, EEG's, MRI, lumbar punctures and a lot of blood work.  They could only tell us that she had Infantile Spasms (a certain type of seizures), but they could not tell us why.

With the help of an extremely diligent genetics doctor, we found out that Ashley's seizures were caused by ASLD.  Ashley was four months old at the time, and it was her second hospital admission.  I remember feeling a certain relief that we had an answer, and at the same time feeling stunned at the finality of the diagnosis.  This disorder was very rare, and the research was minimal, with the most severe cases (Ashley being part of that group) usually ending in death at 4-6 months of age.  The information available showed the ineffectiveness of seizure meds, and that seizures were never controlled.

The infantile spasms were a type of seizure that would occur in clusters, generally as the person was falling asleep or waking up.  I remember spending hours at night trying to get Ashley asleep, and just as I would lay her down, another 45minute round of seizures would start up, and she would cry in between each seizure.  One particular night, I verbalized my anxiety and frustration with angry words relaying how I would love to throw my water glass through the mirror, that I just needed to hear the sound of glass breaking on glass.  I will never forget how Alex, in the middle of another sleepless night, leaned over, put his hand on my shoulder and said, "It's okay to be angry".

Those words were a gift, directly from God, and I praise God for helping Alex to love me in that moment when I wasn't very lovable.  That's just one example of how the many prayers have helped us.


This is Ashley at four months old.  She was still having multiple seizures and was very limp with absolutely no head control.  This was about the time that my cousin, Elise, came to stay with us.  She was a wonderful blessing.  Respite didn't become available till Ashley was 6 months old.  Elise's help was a blessing, and she gave up a summer job to come stay with us.

Ashley had a really good month when she was 5 months old.  She smiled a LOT.  Usually smiling at the ceiling, we often wondered if there were Angels dancing up there for her.

As the seizures got worse, the smiles decreased, and by six months old, Ashley was seizing for 2-3 days at a time.  She couldn't sleep, and she lost the ability to suck.  I remember spending hours trying to get her to take a bottle.  Eventually we started using a feeding tube, and it wasn't expected that she would live very long.

For the next six months, we waited and watched.  We had many moments, where it looked like 'this would be it', but Ashley pushed through.  We did not admit Ashley to hospital for this, as we found it was important to stay home.  Staying home, we focused on Ashley's comfort and on a peaceful home environment for all of us.  We were set up with a nurse who would come to give us 'respite' so that we could have a 'break'.  I remember thinking that it was a ridiculous idea that someone should think I need a 'break' from my baby.  But I was counselled that I should accept the help now because if I didn't, then I wouldn't get any help later.  And yes, I did need help later, but I always struggled with accepting someone in my home, looking after my children.

When I think of Ashley's first year, I remember the seizures and the unexpected smiles that would come and go.  She would go for weeks without smiling, and then surprise us with a good day, and brighten our day with a smile.  Almost as if she knew we needed it.  I remember how peaceful she seemed, even with all the seizures.  We could hold her for hours, and sometimes she would be vibrating with seizures, but still there would be a calmness.  I remember cherishing that fifth month because of her smiles and the small number of seizures.  I remember crying when the smiles went away.  I remember the constant decision making in regards to medication, and how everyone seemed to think I should be the one to make the decisions.  I remember teaching Alex how to insert the NG tube because I had to go back to work.  I remember amazing friends, family and aquaintances that brought meals, or picked up groceries for us. 

I remember God's hands working through many human hands.  Don't ever think that your prayers aren't heard.

I remember a friend coming to take beautiful photo's of us with our dying baby, so that we would always have something special and beautiful to remember.

I love remembering all the blessings in the midst of the suffering.  Sharing the journey, helps me remember and smile at the highlights of God's love shining through.