The Gift of Guitar

Aziza loved listening and dancing to music more than any other pastime.  She could truly spend hours swaying back and forth to the music, and loved it when I would pick her up and dance with her.  Not long after Aziza came to us, we realized that there was one instrument that she loved listening to more than any other.  The guitar would stop Aziza in her tracks and she would go right up to whomever was playing it, so full of fascination with this wonderful music maker.  I suspect that the combiation of the musician's hand strumming back and forth, the vibrations on the guitar as well as the beautiful sound is what drew her in.

We have many instruments in our home including a keyboard, violin, clarinet, cello and - yes- a mint green guitar.  Sadly for Aziza, we know how to play all of those instruments except the guitar.  It turns out that this did not matter to Aziza.  Nothing made her happier than me grabbing that guitar and randomly and clumsily struming it back and forth while belting out an unrelated tune at the top of my lungs.  She would shriek, giggle, dance and in true Aziza fashion when the excitement got too much she would give herself a punch in the mouth ;)   This love of my guitar "playing" resulted in a favorite game that everyone could enjoy ... the Family Band.  Everyone would get an instrument (toy drum, toy xylophone, maracas, guitar etc) and we would sing and play as loud as we could.  We even created lyrics that would be repeated over and over.  The poor neighbours.  Aziza loved it and would enthustiastically play along on an instrument right alongside us.

My plan had been to purchase a small guitar or ukelele for Aziza for either Christmas or her birthday.  I was looking specifically for a pink or purple guitar for her.  I know she would have loved it.  I sure miss playing in our Family Band.  May there be a fantastic band for you in heaven, sweet Aziza, with a purple guitar all your own.

Aziza enjoying songs played by Ron, our family friend.  Who knew

a professor of Egyptology knew so many toddler-friendly songs?

September 2010.

 

 

Aziza would often put Sam's hand on the guitar and forcefully

make her strum it.  This is the guitar that sparked the start

of our wonderfully crazy Family Band. March 2011.

 

 

Aziza enjoying some guitar time with Sandy, her music

therapist.  We were so fortunate that Sandy met weekly with

Aziza.  It was the highlight of my girl's week.  May 2012.

 

 

What were the chances that Aziza would spend 3 years with a

teacher who was a musician and played the guitar in class?  I

am sure that Aziza was supposed to be sitting in the circle with

the other kids, but here she was soaking in every moment of

her beloved Mrs. A playing the guitar.  October 2012.

 



On This Day for Mothers ...

Today is Mother's Day in many countries including Canada.  It is a day to celebrate mothers.  It has it's usual traditions for most families, and is generally a day spent with one's children.  As someone who lost her mother at a young-ish age and who has recently lost her youngest daughter this is a day that I have been dreading.

We spent this weekend far from home but sheltered by the love of family and friends.  During this lengthy road trip I had much opportunity to reflect on what is important to me as a mother.  I hear so many mothers express how important it is to them that their children grow up to be "successful".  When asked to define what success means to them I am usually told that it means their children will mature to be independant, married with children, securely employed and own a home.  They often add almost as an afterthought that they of course also wish happiness for their children.

My wish for my children has always been somewhat different than the answers that I have heard.  My children experienced challenges in early childhood that set them apart in many ways from the general population of children.  My children experienced loss at a very young age.  They experienced social and medical challenges that had the potential to negatively impact their lives forever.  Perhaps this is why my wish for my children has always been a bit simpler.

My wish for my children has been that they proceed through life as strong individuals with gentle spirits.  I never presumed to know which direction life might take them and I refuse to give a specific definition of what "success" might look like.  As far as I am concerned to gain strength in character and tenderness in spirit is the greatest success of all.

This year, as I face Mother's Day without my littlest baby, I want to share with you a very intimate detail about the day that Aziza died.  As my sweet baby lay fighting in the ICU on December 5th she was surrounded by her family.  When her heart stopped beating for the final time I knew that my Warrior Princess had fought her last battle.  I knew that her strength of character and her gentle spirit had taken her as far as they could take her in this world.  And in those moments of shock and sorrow immediately after she died, my own heart was jolted by an unexpected and somewhat out of place sound.  It was the sound of a teenager's voice singing.  Quivering with emotion and very tenderly this quiet voice sang - breaking through my sobs and shudders.  There were three other pediatric patients in the room as well as numerous nurses and doctors, and in that moment - and for the duration of the song, everything in the ICU stopped.  The touching melody that carried through the ICU was not that of a typical children's song, but rather came from a popular artist that many teens and adults listen to.  Completely oblivious to the audience surrounding her, my teenage daughter sang with raw emotion and with tears pouring down her face.  Despite the grown up and heart wrenching lyrics it was very evident what the purpose of the song was. This was a teenager singing a final lullaby to her baby sister as she closed her eyes forever.  I will never forget that unexpected scene.

The reason that I am sharing this story today is that it was that moment in time, with one child passing on and another reaching out in comfort, that I realized something.  I realized that my children had already achieved all that I had hoped they would in life.  My children possessed and possess a strength of character and a tenderness in spirit that many will pass through a lifetime without attaining.  I am so very proud and blessed to be their mother ... a mother of sweet warriors. 

Sweet Warriors, May 2012



Five Months and Maintaining Space

Yesterday marked five months since that terrible day.  Time seems to be measured now by when the 5th of the month falls.  Five months is such a short time ... feels like yesterday.  Five months is such an unbearably long time as well when you are are a mother just wishing the days away.  In five months we have undergone changes both in our family and in our home.  Changes in schedules, changes in employment, changes in health and energy levels, changes in outlooks and goals and changes in physical living space.  Few of these changes have been good - but many have been adaptive. 

After five months the physical changes in our home have been obvious.  There are certainly no more toys scattered around nor are there fingerprints all over the mirrors and glass.  There is no more toddler laundry to sort through and clean, and no more sippy cups running through the dishwasher.  However, as I look around our home I am very aware that we have maintained certain amounts of "space" for Aziza.  Aside from the toy shelves that remain in my room and the other special items that are now on display in glass cabinets - there are other smaller items that have not yet been put away.  Like the carseat in the back of my car, these everyday items no longer need to be out - yet it is comforting to leave them where they are for now.  They are not "reminders" of Aziza, as I assure you that we never need to be reminded of our tiny love nugget.  She is always hugging our hearts.  These items however have allowed a softer reality for us.  It is so comforting to have them around.  Here are just a few examples:

Aziza's bathing suit still hangs on the back

of the bathroom door from the last swim

time in our pool in late November.

 

Aziza's glasses are hanging at our front entrance

beside our keys.  The first thing I see when I

walk through the front door.



Some of Aziza's bath toys have been put

away, but these ones remain in their spot.

She loved her bathtime so very much.

 



Tiny purple therapy boots, ordered and shipped all the

way from the UK for my Princess still sit with our shoes.

 

The forever kiss.  Aziza used to kiss her

reflection daily in this mirror.  You can see

the smudge from her last wet kisses.  I just

wipe around it now.

Aziza's Dora toothbrush - always such an

adventure to get her teeth brushed.



Our new "ZZ Plant".  Also known as

the Eternity plant.  Aziza was known

to many who loved her as Zizi.  This

plant is awaiting re-potting.

Sweet Aziza at home a few weeks before she died.

Everything is more difficult without her.  I hate

five months way more than I hated four months ...

I didn't know that could be possible.  I didn't know

any of this could be possible.

 

 

 

Wordless Wednesday (with caption)

May 2011

 

Me and my little sister enjoying a rainy afternoon walk in Ottawa with our babies on our backs. Aziza was almost 5 years old in this photo and her baby cousin had just turned two - they were pretty much the same size. 

Morning Reflection (And an added update on Gracie)

This morning I awoke with a sense of restlessness.  I felt suffocated by my thoughts and needed to move.  So I laced up my trainers, put a leash on the dog, adjusted my headphones and set out for a hike.  With the drawn out winter, the loss of Aziza and my subsequent cocooning in my home it seems I had forgotten the beauty that our neighbourhood holds.  We live along a river and there are also various streams close by and plenty of hiking trails through the forested areas. 

Aziza's favorite place to swing along the river.

With my music blasting through my ears at an unaturally high volume, I tredged forward.  Memories of walking these same trails with Aziza came flooding back to me.  I had visions of the ongoing battle to keep her away from the edge of the river and out of the streams.  I had memories of how she would want to touch every piece of foliage that was within arm's reach.  I chuckled to myself at the memories of trying to keep her away from all of the burs - although inevitably I would always have to remove some from her hair and clothing at the end of our walk.

Life is so different now.  Walking alone at a much faster pace than would be possible with a toddler along, I pondered this new identity that has been forced upon me.   I am no longer the parent of a young child.  Under normal circumstances one is weaned out of this phase as their child progresses through the predictable birthdays and milestones.  As it was, my child passed through those milestones at a slower pace and we treasured this extended toddlerhood.  And then, in the blink of an eye - gone.  Just gone.

And suddenly I am no longer the parent of a young child.  I am the parent of a teenager only - and that is a very different pace of life. As the months go by, our home is slowly changing to reflect this new life.  Our family room is no longer scattered with toys.  Baby Signing Time is no longer in it's former spot in the DVD player waiting to be enjoyed when I needed time to get some housework done.  Our home is void of the highchair and crib that we had purchased and assembled with such excitement as we prepared for Aziza's homecoming in 2010.  Hot beverages sit at the edge of counters and laptops and ipads sit on the ottoman - there are no little hands to get at them.  Teenagers spread their projects and games all over the floors without needing a baby gate to keep them intact.

As I navigated the trail this morning, I started thinking that although the circumstances of losing a child are terrible, traumatic and heart shattering - I have no choice when it comes to this new identity.  I cannot change it.  I cannot bring Aziza back, as much as I have pleaded with higher powers and as much as I continue to pray each and every night that I will wake up to find out that this had all just been a terrible nightmare and that my baby is not gone.  But, I cannot change this reality. And so, this is me.  A woman trying to find her way after being forced overnight into a new identity.  And although the circumstances are tragic, I must try hard to ensure that I do not hate my new identity.  I admit that right now I do ... I hate it so much.  But I must try not to, because this is me now.  And I have no choice but to be me.

**Gracie Update**
Thank you all for the messages and prayers for my friend's daughter, Gracie.  It has been two weeks since Gracie had her first stroke.  While sedated and in the ICU she has had another.  Slowly the doctors are withdrawing some of the paralytic drugs but Gracie remains unconcious.  She is having difficulty with her blood pressures (oh, how those words bring back memories of December 5th) and is experiencing withdrawl symptoms from being weaned off the barbituates.  There is fluid around her lungs and Kim is hoping that they will not need to insert a chest tube.  Gracie is having some response to pain stimulus which is a good sign.  Today they will attempt to start to get some nutrition into her via NG feeds.  Please continue to pray for Gracie.

So Close To Home ...

There is a large online community of families who have children with Down Syndrome.  Over the years this wonderful community has been there for me to bounce ideas off of, share milestones with, laugh with and in the end they were there to offer support during the most tragic of times.

Right now one of these families is heavy on my heart.

This is Gracie.  Gracie is 6 years old, has Down Syndrome and like Aziza was adopted into a family who wants nothing more than to give her the world.  One week ago Gracie suffered a massive stroke.  There was no warning, no illness.  In a matter of moments, Gracie went from being a vivacious happy girl whose red hair was a true reflection of her firey personality to being a little girl fighting for her life.

Hearing the updates from Gracie's mom has been very difficult as I know all too well what she is experiencing right now.  Helpless and trusting the skill of strangers with her daughter's precious life.  I have been there and I can tell you that there is no place more scary or lonely than not knowing what the next day, hour or minute holds for your vulnerable and critically ill child.  Today things took a dramatic turn and Gracie started having seizures that could not be stopped.  She went into emergency surgery to have a part of her skull removed to allow for the swelling that is occuring in her brain.

Gracies mother is a wreck.  She is crying, praying and calling out for all of the support that anyone can offer.  Gracie is everything to my friend.  She is her heart, her world and her reason for getting up each day.  She knows that life as they know it will never be the same and she is praying and begging God to spare Gracie and allow her to live.  She knows that it is a long road ahead for her family but is pleading for a chance for Gracie walk that road with them.

Please pray for my friend Kim and her daughter Gracie.  Watching her go through such a similar situation as I went through with Aziza is devastatingly painful.  Part of me can hardly bear to check for updates from Kim ... but the other part of me knows that we can do the one thing that Kim is asking us to do.  Pray.  Pray for beautiful Gracie.

The Most Dreaded Step

After four months I took the most dreaded step in our journey since Aziza's death.  Today, with a heavy heart I dismantled my  sweet girl's crib/toddler bed.  This is the same bed that has been set up within arms reach of my bed since September 2011 when Aziza's tracheal stenosis was diagnosed and she moved into my room so I could monitor her breathing throughout the night.

 

 When we first returned home a month after Aziza died, I could not bear to sleep across from her bed as it lay empty with it's bedding neatly made. My closest friends know that it was so painful that for the first couple of weeks I would creep out of bed with tears streaming down my face in the middle of the night and I would mess up her blankets and tuck her beloved Baby, Monkey Pants and Lovie under them. Then I would return to bed and I could try to imagine that she was safely asleep under her covers. Each morning I would remake the bed neatly.  It makes me so sad to even remember the pain I was feeling when I did that just 3 months ago.

 

 

Although it has been so difficult to sleep in my room each night with her empty bed over the past months ... taking it down seemed like an insurmountable task.  Today I carefully took the bed apart and took down her alphabet wall hanging that had been gifted to her by a friend before Aziza ever even came home.  Today as I did this it seemed like I was taking away her space.  It seemed as if I was saying goodbye.  And I never ever want to say goodbye.

 

 

So as today draws to an end, in our shared room Aziza's bookcase remains, full of toy baskets and shelves of her favorite books.  Also on her bookcase remain her silver cases with a lock of her hair and her lost teeth, her train piggy bank and her beloved Dora nightlight.  Also still in their rightful places are her toy shelves/bins full of her favorite dolls, blocks, cars and puzzles.  But the bed is gone, and tonight for the first time in 19 months I will sleep in a room without it.

 

Aziza's crib was the type that converted from a crib to a toddler bed and then to a double bed.  I will eventually be using the front and back rails of her crib as a headboard and footboard for my own bed.  I don't have the time to do that this weekend, but hopefully soon I will actually be able to sleep in Aziza's bed myself.  So, I guess in a way it won't be gone from my room for long.

 

As I was about to post this heavy hearted entry, I remembered that I had video footage of Aziza in her crib going about her usual naptime antics.  You can view it below.  Click here if you are having trouble viewing it.  For those unfamiliar with Institutional Autism, the side to side rocking is very very common in children who spent unusual amounts of time confined to their cribs (as Aziza did prior to her adoption).  When Aziza first came home she had many many "crib behaviours" such as scratching the crib sheets, flicking the crib rails, rocking back and forth on her hands and knees etc.  However, most of the behaviours had resolved themselves by the time this video was taken ... just leaving a pretty typical toddler who was too silly to want to take a nap.

 

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The Measure of Four Months

How long is four months?

 

Four months is 16 weeks ...

 

Four months is 112 days ...

 

 

Four months is 2688 hours ...

 

 



Four months is 161 280 minutes ...

 

 

Four months is 9 676 800 seconds ...

 

 

After a child dies four months is 112 missed bedtime stories, 448 meals that did not need to be cooked and pureed, 80 absences from school and 64 missed therapy appointments.  It is 112 mornings without sunrise smiles.  It is a change of seasons without needing to switch over the clothes in a toddler's very full closet.  It is two major Christian holidays without a 6 year old daughter to participate in family traditions.  It is a newborn nephew who will never have the opportunity to meet his cousin.   

 

 

Four months is endless heartache, regular nightmares, flashbacks, intrusive thoughts and hopelessness.  Four months is apparently how long it takes to prepare a coronor's report that has still not arrived.  Four months is the beginning of the search for a new normal, a new identity and a new purpose for waking each day.

 

 

In many ways, four months is no different than three months, two months, one month, one week, one day, one hour, one minute.  Any amount of time without my sweet Aziza is heartbreakingly painful.  I miss her so much.



Easter Memories in Photos - 2011

Not too much to say today, but thought I would post a few photos from happier Easter Sundays past.

After church, Easter Sunday 2011

 

Size 18 month dress, infant size 4 shoes.  Almost 5 years old.

 

Aziza and her talking egg, Easter 2011.

Amazed by the musical princess bubbles.
 

Milka 'Lil Scoops, Play-Doh eggs, musical bubbles and the talking egg

 

Little Girl at the Park - Easter 2011

Two years ago on Easter weekend (2011) the weather was gorgeous. The kids and I went to our favorite neighbourhood park by the river.  Aziza was three months shy of her fifth birthday and had only just learned how to climb the small stairs up to the playground slide.  This was that blissful time in our lives pre-tumor diagnosis, pre-tracheal stenosis diagnosis.  A major milestone for her on this particular weekend was learning how to set herself up at the top of the slide and push herself forward to go down the slide.  This was the very first time that she showed independence on the playground structure.  She climbed up, went down and independently did it again. I was so happy for her. A rarely shared video (click here if having trouble viewing ... sorry it is poor quality):

**Note - What this video doesn't show is that in a bad mommy moment, I did not catch Aziza at the bottom of the tall slide (you will see at the beginning of the video the wipeout has been edited out). The other parents at the park looked mortified as my teeny tiny daughter took a nosedive in the sand. They likely thought she was about 2 years old rather than almost 5!!

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If Over the Easter Weekend ...

If over the Easter long weekend you are one of the people who happens to see our family, do not wish us the traditional holiday greeting.  Please be aware that it has been only 4 short months since our Aziza died and for us it is not a Happy Easter.

If over the course of the next few days I do not seem to notice your children's festive outfits selected by you with love, do not think I am oblivious.  Please understand that it has pained me so much to see the beautiful Easter dresses in the shop windows over the past month, knowing that I need not buy one for my Princess whose final resting outfit was her size 2T Christmas dress.

If during the excitement of the children's hunt for hidden Easter treasures you notice that I step away or am absent all together, please do not think I do not adore your children.  I am simply missing my littlest baby who experienced only 2 egg hunts in her short life.

If Easter dinner is served and my seat remains empty, do not think that I do not enjoy your company. Please understand that to sit through a festive family meal without my baby in a highchair beside me tears my heart into shreds and closes my throat making eating almost impossible.

If during this holiday long weekend you feel as though I am not living my life as I should be and am stuck in a place of despair, please know that I agree.  My life should not be like this - it won't always be like this, but right now it is and it hurts more than anyone could imagine. 

If over the Easter weekend you want to give me a hug, it will be welcome.  Please understand that it will bring tears to my eyes as I know that others who love me are also remembering my Aziza and that her tragic absence is felt by all this Easter weekend.

*Note - the photos of Aziza included in this post were all taken over a very enjoyable Easter weekend 2012.

3/21 World Down Syndrome Day

 

March 21, 2013 marks the 8th anniversary of World Down Syndrome Day, a global awareness day which has been officially observed by the United Nations since 2012. Each year the voice of people with Down syndrome, and those who live and work with them, grows louder. But there is still so much more we can do. (www.worlddownsyndromeday.org)

 

One year ago today  on March 21st 2012, Aziza was rocking her custom made World Down Syndrome Day t-shirt.  Of course, a Princess must have a variety of colours to choose from so Aziza had a white shirt and a yellow shirt. 

 

Today our family has received very touching messages and emails from friends within our Down Syndrome community.  Aziza's footprint in this community is far stretching, and her beautiful life is being celebrated this day by many.

 

World Down Syndrome Day is observed on March 21st (3/21) because Down Syndrome results from an individual being born with three copies of chromosome 21 (3/21).  Today is a day to celebrate all individuals blessed with an extra copy of the 21st chromosome.  It is also a day to advocate for the rights, inclusion and well being of people with Down Syndrome.