Avoidance

The anniversary of Hope's death, holds the significance of being an 'ending'.  I am finding that I grieve the loss of both my girls and everything that came with them at this point.

On Aug. 14th I wrote in my journal:

Today is Hope's heaven day.  It has been one year since she died.  Today marks the day when our journey with our special girls ended.

Today I grieve the loss of both my girls; cuddles on the front step during a coffee break; walks to the park so we could lie down on a blanket and watch the leaves dance on the trees; tea parties with Brodie; saturday morning baths and hair do's; a soft cheek next to mine as I hum a song.

Today I grieve the loss of our daily companions, our respite workers who helped, nourished and strengthened us without even knowing it.

Today I grieve the loss of 7am medication prep, diaper changes and fluctuating schedules...a 'busy'ness that gave me purpose and direction as I pushed away any 'sad' feelings.

Today marks the day when our lives changed with a certain finality.  I still wonder at this change.  Although I am living the new normal, it feels odd that life just continues.  It should be easier, but somehow it is really hard.


It's interesting that I've felt fairly good about how this year has gone, and then suddenly I was hit by the loss.  Reading about Hayden's death (the link to his blog is on the side), I find myself identifying with everything that Lauren is writing.  I find myself remembering and hurting...a lot.  And I realize that I have done a good job of avoiding the sad feelings, avoiding thoughts of the girls, avoiding the cemetary and avoiding this blog.

Of course, I had my moments where I allowed myself to think, to feel and remember.  The obvious moments were easy (birthdays and anniversaries), and allowable, but they slowed me down.  A visit to the cemetary would depress my energy level so much that I would struggle for a few days, with a physical and mental exhaustion that always surprised me.  I didn't think about it much, I just tried to get through it without getting frustrated.  Because I didn't think about it, and acknowledge what was happening, I instinctively avoided the cemetary.

The same thing happened with this blog.  To sit down and write about this process, left me open to all my sadness and hurt.  I felt too busy to be burdened by such overwhelming feelings of exhaustion, so I avoided the blog more often.  Of course, I still had posts, but many of the things I would have posted remained in my head.

I kept myself busy at home, distracted with kids, work and books, and it worked for me.  I'm not saying that this was wrong.  I'm not saying that I never allowed sad moments.  But I am surprised to see that I have avoided a lot of the sad feelings, when I thought I was doing okay with them.  There is no right or wrong in grieving...it just is what it is.

I'm reflecting on this, because I've had a hard week.  My struggle this week has been  incredibly intense, and I wonder if it's because the one year anniversary has left me with a whole lot of emotion.  Emotion that I have been avoiding.

I'm sitting myself down to reflect and re-evaluate.  So far I've had to remind myself of these truths:

1. Death hurts and it is natural to feel heart-broken
2. It's okay that no one but God knows how I truly feel
3. Friends who listen without trying to fix are valuable
4. My own grief journey is unique and I don't have to meet anyone's expectations
5. I am perfectly loved and accepted right now and always by my God who understands everything.
6. Sad feelings, tears, moving slower and a messy house does not mean I am falling apart

I probably have a lot more to learn, but don't concern yourself with that.  I am writing because it helps me a lot.  I am also writing because someone might find something useful in what I am sharing.  My loss might be unique, but perhaps you can identify with some aspect of my process.  It is when we share our struggles, that we find support.

We are blessed that it is not all a struggle.  We remember Hope wearing this beautiful dress from her Grandma, at Easter, 2009.

 

Mira wore that same dress to a wedding this summer.  Watching that dress dance and twirl around Mira gave me incredible joy as I thought of Ashley and Hope dancing in heaven.

Hope's Day

One year ago today, we held Hope for the last time.  Her hair was braided, she was wearing her beautiful, handmade, dress that reminded me of a rainbow.  We wrapped her in her special blanket and wondered how we could let her go.  And then we watched as the long, black vehicle slowly drove away down our street.  Even now, I get tears in my eyes when I see a funeral car.

We are so grateful to the show of support at Hope's funeral, and for the meals and cards and emails and donations.  Thank you to everyone.

We just cried a few tears as we watched Hope's funeral slideshow, and now we're heading over to the cemetary as a family.  The memorial stone isn't there yet, but will be in about a month.  I hope you're able to watch the slideshow and remember our beautiful Hopey with us.

Love,
Jolene & Alex

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.