Happy Birthday Hopey!

Five years ago, we held your beautiful, tiny, newborn body in our arms. 

And then something wonderful happened.  You started smiling at 3 weeks old.  You seemed to smile right at me.



Soon, your smiles and coo's had us marvelling at you in wonder.  You could move your arms and wave them around.  You could drink your bottle and bounce yourself out of your chair. 



At one year old, you were still doing well.  Seizures were not an issue, and you could eat from a spoon.  You were always hungry!  We had to have your meat, veggies, fruit and two bottles, lined up and ready to go when you woke up from your nap, because you would scream your displeasure if the food didn't come fast enough.  Oooh, you were sooo cute!!!



We were taken by surprise, when you were found seizing one morning.  You were 14 months old, and the seizures didn't stop, until...after many emergency meds, you stopped breathing, and the team in ER kept you alive with an oxygen mask, attached to a bag that could force air into your lungs.  I will never forget how your dad and I stood together and prayed for you, hoping that we would not be the ones to decide if it was your time to go.  You started breathing on your own after 40 minutes.

We took you home at the end of the week, with you still having periods of apnea, not sure if you would survive more than a couple days.  You stayed with us, but the seizures ruled the house, and you didn't eat anymore.  Eventually the smiles were gone, and with numerous new medications, you became our limp baby doll.  It was time for a different type of care, and different expectations, and a feeding tube. 

I am so grateful for the added years.  I remember holding you and wishing for big smiles to return, on your second birthday (and being grateful for the soft, subtle smiles that you blessed us with). 



Eventually your smiles came back, and here you are at three years old.





And now we look at last years birthday pics...four years old.  We wonder how it is possible that a year has passed, but your memory is as fresh as if you were here in our arms yesterday.



Last week, you would have been five years old.  We remembered you as we watched your slideshow, and let five purple balloons go into the sky.



As I recall your life and Ashley's life, I feel so fortunate to have been blessed by you both.  It's hard to describe how a life that sounds 'tragic' to some, can be so beautiful to remember.  I know I struggled at times, but it's only because of my struggle that I can see God's hand at work through it all.  Your life was a gift that shaped me in a way that is good for my soul.  My struggle through the emotions, the work and the rollercoaster of illnesses, made it possible for me to see my weakness and therefore, see God's strength.

As I worked through my feelings of anger, loneliness, and sadness this year, I slowly became more aware of this fact...I would not wish you or Ashley away.  I would not exchange you for a more 'perfect' child.   Every child is a blessing, whether we choose to see it or not. 

I love you, Hopey.  Happy Birthday!



Pray a thank you

I came across this photo of Hopey, taken in December of 2008.  I paused because Mira is now wearing that same sleeper and often has the same little pigtails.  It's felt a little confusing to look at Hopey laying there in my arms, trying to take a bottle, and then look at Mira wearing the princess sleeper, but she's running around and saying words.

I look at Hopey in this picture and remember, but it is strange to be remembering, when it feels like yesterday.  Ashley and Hope aren't here, but they don't feel far away.  I miss them each day, but I don't think of them every moment.  I'm grieving inside but I'm functioning and joyful on the outside.

Life is full of contradictions.

This next photo reminds me of all the photos I have of Brodie cuddling Ashley or Hope.  How many times a day do we marvel and wonder at the blessing of Mira and Brodie in our lives?  It is ongoing...

And at the same time, we wonder at the blessings of having had Ashley and Hope in our lives.  How would we have appreciated the deep joy of two healthy children, without the experience of our journey with Ashley and Hope? 

Mira puts her warm, chubby arms around my neck and squeezes tight

and I pray a thank you

Mira sings out her joy in church with no thought for those who might want to hear the homily

and I pray a thank you

Mira runs at Brodie with her arms open wide, tackling him with her hug

and I pray a thank you

Brodie reminds me that we should help Mira know the girls, by making her a special book

and I pray a thank you

Brodie takes Mira by the hand and lovingly shows her the butterfly's that symbolize life

and I cry a little as I pray a thank you.



A glimpse

All day long, I have glimpses of Ashley and Hope as our screensaver rolls cycles through our photo files.  Glimpses of different parts of the journey, bring memories, smiles and sometimes tears.  It keeps me connected to their memory in the midst of the busy demands of life.  It slows me down and reminds me of the importance of loving...right now in each moment.

It's interesting that Mira does not remind me of Ashley, or of Hope.  When she was younger, I definitely saw bits of Hope in her, but not anymore.  Mira has her own look.  She does everything that the girls did not do, and I still feel that 'Wow' feeling in response.

I had wondered if the screensaver photos would someday cause me pain, knowing that there would be no new pics of Ashley and Hope.  I wondered how I would look at those same pictures, year after year, with nothing new to add to them.  I wondered how it was even possible that I would never take another picture of Ashley and Hope.

As the months went by, I eventually noticed something.  I did not have new pictures of Ashley and Hope, but my screensaver was not becoming a stagnant pool of old memories.  The old memories were being enhanced and built upon by new photos of Brodie and Mira.  The old photos ran right along side the new photos, and suddenly I saw that Mira's growth and development would help me keep moving forward.

A picture of Ashley... a picture of Hope... a picture of Mira walking, playing with a doll and showing us so much more.  Little bits of sad remembering balanced by joyful hope in the future.  What a blessing.

One Year

I have not found myself marking the months consistently but the one year mark is screaming at me for attention.  Tommorrow, it will be one year since Ashley took her last breath in our arms.  How is it possible that we have watched one child pass away from us, and then another...

Knowing that this day was coming, I have been posting more about Ashley.  Sensing that this weekend will be hard, I've been doing a lot of thinking.   How do we commemorate the day, and how do we make the day special?  I had heard some wisdom that it is best to go away for the first anniversary, so we had planned a trip.  Well, the flu hit our house last Saturday, and one by one we have each gotten sick.  Mira was puking most of Saturday night.  After a couple hours of puking she had nothing left in her stomach and she would just roll over and heave in my arms.  She reminded me SO MUCH of Hope in that moment.  Alex got sick while he was away on a work trip (poor guy) and I got sick next.  Today, Brodie started puking.  So...no travelling.  Sound familiar?

It's kind of appropriate actually.  Our life with Ashley and Hope involved a lot of hands on care, holding and cleaning up.  We made our life at home as simple as possible (as the girls became sicker especially) and avoided a lot of activities so that we could take care of them better and minimize stress.  And here we find ourselves again, as we remember Ashley.  Instead of a trip out to Elkhorn, we are staying home to do what's best for our family and that feels right.

We'll still remember Ashley and look at her baby book, as well as her slideshows.  Tommorrow we'll be able to go to the cemetary if Brodie is feeling well enough and maybe even sit there for a picnic.  We'll sing Ashley and Hope the songs we used to sing to them, and know that they are singing with us now.  Tommorrow is Ashley's heaven birthday.  We'll celebrate the six years we were given to love and hold our special girl.

Forever we will love you Ashley!

Sadness

Sadness is something that I have avoided for years.  I was determined to keep sadness away because I did not want to slide down that slippery slope that would leave me depressed.  Sadness and anger went 'hand-in-hand' for me.  For my sad days, I had a list of strategies to help me through, so that I wouldn't feel hopeless.  Things such as quiet time with God, encouraging music, walks outside, healthy food, extra water, scripture and prayer time would be on my list.  Unfortunately, I found these strategies rather unappealing when I woke up with the burdensome feeling of sadness.  I often ditched the list in favor of shopping, eating out, coffee breaks or a book, which never helped and often left me feeling worse (wasted time really bothers me).  Over time, I learned from my experience and more often chose the 'good' strategies to help me get through the sad days.  What I remember most was a strong determination to 'get over' the sadness and not let it 'win'.

I acknowledged my sadness as being related to my girls' delining health and the increasing work load, but I didn't like this fact.  My girls' were special, a source of blessing and worth cherishing.  I did not want to see them as a source of sadness, and I certainly didn't want anyone else to have that view.  So, sadness became the enemy that I fought against.

Now, it is different.  I am allowed to be sad.  What a strange thing.

With the passing of Ashley and Hope, I somehow have permission to be sad without diminishing the value of my special girls.  So, this is new for me, and I'm trying to figure it out.  The sadness that I am feeling is a light, generalized feeling that kind of floats up and down around me in varying degrees of intensity.  It doesn't stop me from moving through my day, or loving my children or accomplishing the tasks that are set before me.  It's just a subtle awareness of my altered life which leaves me feeling fragile and tender.

When I acknowledge this sadness, I move a little slower and find myself gently reminded to give thanks for the blessings around me.  This is how I know that God is at work and I am not alone.  When I don't acknowledge it, I fall into the familiar cycle of fighting the sadness.  

This sadness is not scary for some reason, and it makes sense.  To name what I'm feeling is a really good starting point.  To trust God to walk me through that feeling, brings me to acceptance which is quickly followed by peace. 

What a remarkable thing!   So simple and yet I would not have been open to learning this lesson earlier.  I was just so focused on getting through each day.  I can't help but think that I (and my family) would have benefited from my learning this lesson sooner, but I'll accept the lesson now and endeavor to put it to good use.

Happy Birthday Ashley

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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.