The present

May 8 - in the tulip fields at Keukenhof

I miss her.

Of all of the emotions, feelings, fears and hopes that undulate in between, it begins and ends with the palpable bottom line: I miss her.

Her daddy misses her, her brother misses her, we all miss her.  It's hardly a strong enough phrase.  We see how Sebastian is drawn to slightly older children, challenged by them in size, vocabulary, physical skills and can't help to wonder how it would be if his big sister were with him now.  We see how her little girlfriends in Doha have aged from precious babies and toddlers to gorgeous little girls, and wonder how she would have grown as she approaches her 4th birthday as well.  We miss her at mealtimes, at bedtime, in the mornings, in the car, in the garden; every moment of every day is anchored by the fact that we wish she were here with us.

I have not chronicled every painful turn on this journey of grief over the past 10 months.  In part, because there is no vocabulary large enough to adequately express how I'm feeling when the seasons turn without her, what it's like to run my hand over her red leather mary-jane shoes, or put the silver dipped cast of her hand that was taken in the hospital in the palm of mine.  There is no way to express it or to explain it.  It's a pain that you can touch, that grabs your jugular, that doubles you over.  But mostly I haven't written about the moment by moment blows of the past months because I have no desire to relive what we've survived, even if it were revisiting it through words on paper.

May 15 - playing at Great Grandparent's home

We have come so far, yet we have a lifetime further to go.  From the beginning Richard and I set out to do our best not to get stuck in the whirlpool of grief, the injustice of it, the what-should-have-beens...  And crumpled in tears on the floor after we saw our daughter in flesh for the last time, we made a promise to ourselves, to each other, to Sebastian, to our future children - and to Isabelle -  that we will not allow this tragedy extinguish us. For me, my magnetic north far before even meeting my amazing husband and having our children, has always been to mother & wife with joy and love.  That hasn't changed - it is my greatest joy and my greatest achievement.  I will not be a miserable mother, wife, person.  And this has been the gravitational pull that has gotten me out of bed every day to make big, hot breakfasts for my boy(s), to set aside my grief when playing and focusing on Sebastian, and has me doing everything possible to take care of the growing baby we're soon to meet.

May 16 - Just 24 hours before...playing, running up and
down their new slide, wrestling with Grandpa...

This journey has come with bad days, very sad days, challenges, and physically gut wrenching moments.  Richard nor I had ever really experienced death before this.  We've had to learn how to grieve and how to make sense of our new perspective on life, on the world, on the chaos within it...the unfairness within it.  We have had to brace ourselves for holidays and special events, only to realize the worst is when you're packing to go home from said event or putting away the few holiday decorations that you managed to get out, breaking down in disbelief this event just came and went without her.  As for the holidays themselves, there is so much ramp up, so much adrenaline and distraction by others who are sharing the moment with you that it keeps you from fully feeling the acute pain of it sometimes.  By far the worst moments are when you least expect it; hiding tears behind sunglasses as you walk down grocery isles alone when she should be next to you pushing her toddler-sized cart, putting on a brave face when a person asks you how many children you have, or catching yourself using the size 6 diapers for your child that were from an open pack of Isabelle's.

May 16 - same evening, practicing "Jazz Hands."

She was meant to start dance classes that August.

As for the enigmatic, ameba called grief, it is my belief that it can engulf you if you don't somehow channel it.  It will never leave you, only change in shape and size.  It doesn't mean you can't be happy again, it doesn't mean you can't laugh again, or still strive for the goals you always had.  It means you have to keep it in check - and that I suspect is different for everyone.  For me, that has large in part been Bubbles for Isabelle.  Richard mentioned at one point in the early days of our shock and sadness that we should do something special for Isabelle on her birthday.  And from that conversation, I found focus and something within which to pour my grief.  Every situation and person is so different but for me, I could not sit still and let the enormity of our loss eat me alive.  I had to harness this overwhelming loss and pour it into something. Bubbles for Isabelle, and everyone who has been involved or contributed to it, has helped me to grip grief with both hands like handlebars on bicycle and steer it, rather than it steer me.  My hope is that one day our children can come up with creative ways to celebrate their sister's birthday each year through annual Bubbles for Isabelle projects.

Exercise and sleep.  A week or so after Isabelle passed away, Richard and I spoke with a grief therapist.  I remember very little actually being helpful from that conversation - perhaps it was too soon or simply because it wasn't what we needed. But I do remember him saying, "you must exercise and you must sleep."  I appreciated such practical, straightforward advice.  And upon returning to Holland I sought out a personal trainer and Richard started up with a couple soccer leagues.  We continued to eat well and do our best at sleeping.  There were days in the beginning when all I could do were simple floor stretches while my face was wet with tears.  Oh dear, my poor trainer had no idea what he was getting himself into when signing on!  The training has come and gone and come again and gone again, as first trimester pregnancy had me exhausted and nauseous, and then winter holidays, and now the final weeks before our newest addition arrives.  But the training was helpful - it got me out of the house, was at times a vehicle for emotion (again, my poor trainer!) and it helped me to sleep. We continued to eat healthfully and just did our best to control what we could.  We bought the Angelcare AC1100 (we actually have three - one for Sebastian, one for the new baby and one for a back-up!).  This has been hugely helpful in sleeping.  It's a video, sound, temperature and most importantly, movement monitor.  It came on recommendation from someone whose 2 year old also passed away after going down for sleep.  (It never ceases to shock me that others have endured such similar tragedies as our own).

Hilversum Heide - where we go often

Surprisingly, being in Holland has been a helpful factor in working our way through the this past

year.  I cannot bear to imagine what it would be like if we were still in Doha, where Isabelle spent most of her life, where every turn is marked with her history.  We had only moved to Holland a few months prior to suddenly losing Isabelle and had not yet built up a large network of local friends, which on the outset you may think is a disadvantage.  However, it has in some ways forced us to face the pain without distraction.  We live in the beautiful Dutch village of Laren with fields and miles of trails just steps from our house.  It feels (to us at least) like a slow, peaceful existence, which is what we've needed.  The earth and the space (both literal and figurative) have been helpful as a place to go to reflect and process what happened to Isabelle, what has happened to us.  We go to the "heide" many weekends as a family (it's a very Dutch thing to do on a weekend morning - lots of families are out and Sebastian loves it) and I sometimes go alone during the week when Sebastian is at nursery.  In the space and quiet of our daily life here, not only in the heide but in Holland generally, it's given us opportunity to really think and talk about what we're going through each turn of the way.  While we welcome and love the visits from friends and family, I really think the quiet of our days has helped (to force us) to process our feelings and not avoid the very difficult days of grief that one has no choice but to go through eventually.

May 17 - Morning of, playing outside (she's in front and

Sebastian is in the grass on the left).  Again, taken with the iPad

having no idea it would be one my last photos of her. 

We will always physically ache with the longing to have Isabelle back. We are still learning how to get through our loss and go on to live a happy life.  We're learning, trying, to laugh again, to enjoy again, to look forward again...without feeling guilty.  One of the many things Isabelle taught us, is that life can change in a second and to make the most of every moment.  And I think of Sebastian and our future children...  They will one day look back and ask questions about losing their big sister.  I want to do my best to lead by example that a person, a family, can move forward from tragedy; to live out the lessons Isabelle has taught us.  They will no doubt face rough patches in life - hopefully nothing like this - but the last thing I want for them is to think a person or a family cannot recover from difficult times or giving up is an option.  What kind of lesson is that?  It is not easy.  Even though at times it feels we’ve lived a lifetime since May 2011, this is all still very new to us and we're still figuring it out.

And finally, my husband.  We have gone through something unimaginable and more than ever - more than I ever thought possible - I am overwhelmed with love, respect and gratitude for the man I married.  Steady and strong, strong and steady; he always has been and continues to be.  With wise perspective he is open, transparent, sensible and loving...  We have been fortunate that our journey has been side by side along the way.  I understand that is not always the case and I don't take it for granted, not for one second.  I'm so grateful it has come naturally and not been another thing to work on.  Again, there are not enough words.

I think I mention a few times, "making sense of" what happened...  Making sense.  Ugh - making sense how my child could be a bouncing, happy toddler one evening, to "baking cupcakes" for me the following morning, to eating her share of dinner that evening, to having a seizure & arrest that night, which eventually took her life?

How on earth do you make sense of that?

May 17 - Play pretending to bake cupcakes. That is

her in the bottom right corner, and I wonder now if she
was feeling sensitive to the sunshine (a symptom of meningitis)?
The wondering, the questions, never stop.

I may forever seek answers to the “how could this have happened?” And to be honest, I find it my prerogative to search and seek as long as I need to find more information on what happened in my little girl's body that night.  I have read countless articles on meningitis, meningoencephalits, febrile seizures, viruses that can penetrate the blood brain barrier... I have spoken to countless doctors quoted in medical journals speaking on such topics.  I have had doctors show me diagrams and explain to me in detail what unfolded in her body, as difficult as it was to see and hear.  Most of these doctors, if not all come to think of it, have suggested at some point that I should accept what happened and not continue to seek more answers because there may not be any.

To which I respond, "Would you?  Tell me, would you? Knowing there might be more information out there related to something that took your child's life, would you just...stop?"  Of course not.  Then we carry on.

Their intentions are good.  The likelihood that we will get any more information than we already have is slim.  And in the end, it doesn't change anything - our little girl is gone.  I can't even believe I write those words.  Continuing to seek answers does not mean that I am not "accepting" what happened to us, which would rightly be cause for concern.  I am simply a mother who will not rest until I know we've done everything possible to understand fully and completely what took our daughter's life.  What will it mean should we find out which virus it was?  Will it give us closure?  Maybe.  Maybe not.  But if there are answers out there, you can't expect a mother not to go the distance to find them. Even though I know that no amount of understanding or information about what happened will right this wrong, it doesn't feel right to stop at this point. So I won't.

To this end, we are currently in the process of having her paraffin blocks (what they use in autopsies) sent to the University of Pittsburgh Medical Center for further testing to see if they can identify which virus ultimately took her life.  They have one of the largest laboratories for this kind of testing, so hopefully we will get a bit more details.

In the end, all that is and all that ever will be, begins and ends with the fact: we miss her.  We miss her with every fiber of our being.  And we always will.  

We just miss her.