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4 months, 122 days, or 17 weeks & 3 days

It seems like a lifetime ago and yet it feels like I am still living the moment when I said goodbye to my sweet girl, Ryleigh.  There is so much that I wish I would change but know that the gift of hindsight is not to change the past but to use it to live better in the future.  I wonder often if that was Ryleigh’s plan as she chose to end the suffering she endured for so long.  I believe that Ryleigh wanted each one of us to live better because of her.

At times, I feel selfish for missing her.  I wish that she was still sitting on the couch beside me teasing me for my absentmindedness.  I wish I were still cooking separate meals for her so that she could at least eat something that agreed with her.  I wish I was still caring for her by changing her ileostomy pouch or rubbing her feet.  I wish I could see her and Chloe playing with the puppies and loving each other as only sisters can.  I feel selfish because although these things made me feel better and connected to her – she was losing her sense of well being and could not fathom living like she was for much longer.


I am overwhelmed by the sense of loneliness I feel. I am not alone – but still feel so lonely.  Missing Ryleigh’s energy and enthusiasm has created a void.

Luckily I have many wonderful people helping me figure out how to learn to be who I am know.  Losing Ryleigh has changed me forever.  I need to learn how to live as this different person.  It is not easy.  I am grateful for the normalcy of going to work each day and learning with my wonderful students.  They teach every day about grit, resilience, getting through challenges, and being compassionate.  Being able to focus my energy and time on teaching has allowed me to keep myself a bit distracted.


The pain and grief from losing a child is so hard to explain.  I am astounded by the complexity and layers that are unraveling as I try to move through my days as life still goes on.  Unfortunately, I have experienced the loss of my mother and other people olse to me.  Losing Ryleigh has far surpassed any of those experiences.    I am continually taken back to the moments that were the most traumatic for me.  My brain does not seem to want me to let go of these moments – finding her, trying to resuscitate, the hospital, and saying goodbye.  The hard part is that when I have the many positive memories of Ryleigh my brain and body resort to thinking and remembering the trauma.

I don’t believe time heals all wounds.  I believe that time just allows us to develop some coping skills to make it through another day.

As I reflect on this 24th day of January — I hope that the people in my life who are hurting and feeling lost find some peace.  I hope that my actions or lack of action has not contributed to anybody’s hurt or pain. I feel so different then how I was 4+ months ago.  I can only hope that the positives will outweigh the negatives.

Be kind to one another…you never know what the person beside you may have endured.


Thankful for moments…


As our first holiday without Ryleigh comes to an end, I reflect on the moments that are so precious that we often take for granted or rush because we have something else to do. I had learned from both Chloe’s cancer and Ryleigh’s  illnesses  to embrace and appreciate the time together – even if it was riddled with stress, pain,medications, doctors, nurses,  needles, and the unknown.  I think I have always prepared myself  that I may have limited time with my girls – that is the product of having children with life altering diseases.  There is always a cloud of what if?   I will work hard to spend even more precious moments with Chloe (as much as she will let me).  To help her with managing her chronic pain as she enters another severe flare.  Grief, stress, worry, and missing Ryleigh contribute to her pain syndrome escalating.  Her body is swollen, she is fatigued, and her nerves are firing too much causing all parts of her body to hurt.  However, she still finds the strength to care for our precious puppies – Jakob, Remy, Oma, and Angel.

Although I am struggling with many parts of the grief and sorrow related to the sudden loss of my darling daughter, I am thankful for the many moments we had together. I know that one thing her illness gave me was real, meaningful, focused time:

  • time travelling to appointments-  watching other travelers and wondering where they were going and why, teasing each other as we try to navigate  luggage and a wheelchair, having a meal  at the airport White Spot.
  • time waiting for appointments or getting tests done –  discussions about games or videos Ryleigh would be watching or books that she found.
  • time in hospital rooms waiting to find out what treatment may work – quiet time, laughing time, and sad times but moments that were meaningful and intimate.
  • time in hospital rooms receiving the treatments – time waiting together hoping that this will be the treatment that works; making plans for what we will do once everyone is healthy; making plans to paint bedrooms, go on trips, train the dogs, make jewelry, and just do things!
  • time  watching silly reality shows and making fun of them  at odd hours of the day and night because pain did not allow Ryleigh the comfort of sleep
  • time to talk about the secrets of the universe or why people are the way they are  as I cleaned a central line or changed her ileostomy bag

I realize now, even more so, how precious these moment were and still are to me. Don’t misunderstand me – there have been many times I wish I had slowed down and not worried so much about all the stuff I had to do and instead work harder at being with my girls.

I have had people ask me how I have managed with dealing with all that has come our family’s way.  The only answer I have is – how can I not manage?  The gifts my daughters  continue to give me through their love, joy, and courage can only keep me focused on what’s important – appreciating the moments that we had and will have together.  I appreciate the arguments, frustrations, disappointments, and hurt just as much as the laughter, thoughtful conversations, hugs, and fun.

Moments together are what matters. It may be a cliche but it is one that is so true.    I am grateful that I learned a long time ago that each day may be my last with either of my daughters…so I selfishly held on to moments as long as I could.  I truly believe that I spent a lifetime with Ryleigh even though it was only 15 years. We did have a life time of moments together that I will hold on to forever.

Ryleigh’s Way…

Ryleigh Dr. Who

Thank you to the wonderful town of Vanderhoof for helping us say “See Ya Later” to our darling Ryleigh.  It was an amazing night of love, kindness, and compassion.  Ryleigh wanted her life to be celebrated and it sure was a night of food,  music, laughter, tears, and stories of love and even some dancing.  It was so joyful for me to hear the ways that she lived her life in a positive way – something I will aspire to do every moment.  Her strength and courage will allow me to carry on and help make the world a better place; Ryleigh’s way… with love, laughter, smiles, humour, deep thinking, and kindness.  I love you Ryleigh, you will always be my treasure and joy.  Thank you for letting me be your mom.

Saying farewell…you were loved, my darling Ryleigh

My heart is so burdened and heavy. My lovely, caring sparkle of joy is gone. She has gone to some place where there is no pain or struggle. My heart and body aches with the sadness and feeling of emptiness.  She was an amazing young woman and I am so proud and honoured to call her my daughter.  I will continue to blog as it is so a way to process my thoughts and feelings. Thank you to everyone who had been with us since day one.  We can cry and then move on to remembering and living our lives with purpose and gratitude.  Ryleigh want us to do that.  LOVE to all of those that are caring and remembering.

Books give me energy!

Yesterday Ryleigh spent the afternoon with two of her doctors.  Her rheumatologist and her gastroenterologist.  I have to say that these appointments were the most hopeful.  There are no answers but their was more information which can always lead to a solution.

First, Ryleigh’s gastroenterologist , Dr. Barker discussed with us the results from her 3 scopes she had on Wednesday.  He brought pictures from the scopes which was fascinating to see.  There is definite disease in most parts of the digestive system that they could see.  I asked Dr. Barker if this rules out the possibility of a complex pain syndrome  – unfortunately he thinks she is experiencing complex pain as well.  Her brain has become wired for pain and this just adds another layer to her health care.  She will be continuing with the Thalidomide until the doctors get special permission to try another drug and/or she goes to Sick Kids and they recommend something else.

He is officially referring her to Sick Kids in Toronto but is not sure yet how long the wait will be.  He will let us know when he finds out.  Until then, Ryleigh will continue with doing what she is doing.

Then Ryleigh spent 1.5 hours with the rheumatologist.  This doctor was familiar with Ryleigh as she had met her in 2013 when Ryleigh had the two complications:brain lesion and deep vein thrombosis.  It was reassuring to Ryleigh because this doctor was understanding and supportive.  She empowered Ryleigh by affirming that she was a mystery to all of the doctors and that she is coping fantastically.  I so appreciated her comments as it gave a renewed energy and hope that we can cope and make it through.  There is some discussion now that this might be a syndrome or disease that shows itself within symptoms of Crohn’s disease. Because she has had some odd complications – these might be from another condition.    It was interesting to hear the doctor discuss her symptoms and disease in another context.

This doctor also gave us some ideas for supporting Ryleigh in being more independent.  We will be looking into a mobile device of some sort to give her a chance to get out and do teenage activities.  Also, I was given some ideas to get her some ongoing support in the home and at school to manage her fatigue and pain.  All very hopeful!

This has made Ryleigh feel like she can get out of her room and experience life a bit more.  Usually after her appointments she wants to go back to her room to rest.  Not this time….because we had a wheelchair she wanted to get onto the skytrain and head to Metrotown!  It was so much fun – we had no plans but just walked around, looked at things, and made a few simple purchases (she spent most of her time in Claire’s looking at accessories and of course chapters looking at books).

As we were leaving I complimented her on the positive energy and willingness to go out of her comfort zone.  She looked at me with a big grin on her face and said, “Mom books give me energy.” What a delightful comment coming from a 15 year old!

I reflect on our 3 hours out in the real world. Away from hospitals, doctors, and worries.  I sat on the bus on the way home grateful for this time.  The week started out so miserably.  I was feeling hopeless and helpless.  Not knowing what to do next for my daughter.  My limits have been reached, I thought.  I could not take anymore – emotionally, physically, and financially.  Then, I took a breath.  Asked for help and got through the week.  Ending on the most joyful time I have had with Ryleigh in many months.  Her bright smile, energized manner, and joyful energy just doing what most people do every day – was uplifting and gives me the courage and energy to continue finding moments like this for her.

We come home today.  I am looking forward to the start of school for Ryleigh and myself.  We come home to a community that has wrapped us in  kindness, caring, and support.

Perfectly Purple!

purpleRyleigh had a nice day today.  She got up early to travel by bus to the beauty salon that we found years ago.  We actually met up with our stylist on the bus.  Ryleigh decided to go with purple again and it just brightens her up inside and out!

We then ventured back to Ronald Macdonald House and met up with our dear friends – the Cullum’s.  Nash, Jordyn, and Ryleigh explored a bit and played some air hockey.  Ryleigh was so happy to hang out with them.  It was great for me to sit and chat with Debbie and Warren.  Kindness, laughter, and friendship – a rewarding way to spend a day after a tough couple of days.

Ryleigh and I have had some difficult discussions over the last couple of days.  I feel for her as she is frustrated, sad, and angry.  She had 3 scopes yesterday.  The scopes showed evidence of disease – which was no surprise to Ryleigh.  She still wonders if the pain is amplified by having developed complex pain syndrome but nevertheless the disease is still in a full blown flare.  Reflecting on the issues that continue to face us – I realize that Ryleigh has developed some excellent pain management strategies.  She has to as she is in some sort of pain throughout her days and nights.  Nights are hard –  I am understanding that a bit more as we are sharing a room.  One of the way she copes by watching youtube videos (she follows a bunch of different ones). There is nothing better than to hear her random giggles as she watches them.

We chatted again with the nurse practitioner and her doctor yesterday.  It has been decided that a new set of minds would be beneficial to help look at her medical history and issues now.  So, she will be referred to Sick Kids Hospital in Toronto.  The hope is that a new team will perhaps see things differently.  Ryleigh and I think this is a good way to go.  She has had numerous symptoms and complications that are not typical for Crohn’s disease.  Ryleigh (and I wonder with her) wonders if perhaps the crohn’s disease is actually a symptom of something else.  Dr. Barker also agreed that having a new set of doctors looking at the her files with a fresh perspective might help see something others had missed.  Because she has been under the care of many teams and departments and she has had some many crises…something else might be found.

I also think that her team is so focused and wanting to help her that they may have possibly gotten too focused. Getting ideas from someone else could be the answer.

We do not have any definitive times about when this will occur. So, she powers on.

Making a tough day better…

ryleigh and shake

After Ryleigh’s appointment and a bit of rest we ventured out and about to distract ourselves from the disappointing day. Ronald MacDonald House loaned us a wheelchair and so we went to the Skytrain station and found Ryleigh’s favourite restaurant, White Spot!

We did not rent a car this trip so travelling is limited.  Having the wheelchair has allowed Ryleigh to get out with me.  The bus and sky train are more accessible and easier.

Ryleigh has 3 scopes today. It will be a day spent at the hospital and then resting for the rest of the day.  Tomorrow Ryleigh gets her hair done!  Yes, purple again.

Thanks for all the positive and supportive comments…seems like we are on this roller coaster that never ends!

A Heavier Heart tonight….

heavy heart

I am carrying a heavier hurt tonight – and my heart is hurting.  Ryleigh’s doctor agrees that the new medicine is probably not working.  That Ryleigh is still struggling and that the other medicine that has just been approved she may not be able to use as she is allergic to latex.

He is also convinced that Ryleigh may be struggling with Complex Regional Pain Syndrome.  Yes, that is what Chloe struggles with as well.  He believes it is another complex layer on top of her Crohn’s disease. Ryleigh is frustrated with her body, her situation, and the struggle to manage.  She is still trying to not give up – another challenge for her to figure out.    I cannot really say much more except we are processing the news, not giving up, and trying to figure out what to do next.  Here is the explanation (I believe I posted it before) of what this syndrome is.

Never Give Up


This is what Ryleigh told me yesterday — that she is not giving up.

Six weeks ago Ryleigh started a “new” medicine, Thalomid.  It is the same as the the thalidomide that was banned in Canada because of it causing severe birth defects.  It took almost 6 months to get permission and the protocol completed for Ryleigh to try this medication.  It is not covered by pharmacare or my extended health and is over $3000 a month.  With Dr. Barker’s help the drug company was convinced to give Ryleigh compassionate release so we do not have to pay for it (at this point).

This medication has had only one medical study done (in Italy) with 30 children with severe Crohn’s disease.  It had good results and we are hoping that it will have the same for Ryleigh.  According to the research, the Italian children started to experience remission from 4-8 weeks.  Currently, Ryleigh is not experiencing any relief.

Ryleigh continues to struggle with constant pain, fatigue, skin rashes, and swollen and painful joints.  It continues to be heartbreaking for me but I am amazed by her.

We are in Vancouver this week as she has appointments and some tests.  She is going to have scopes done again to see if they can see anything.  Unfortunately, most of her pain is in the small intestine and the scopes do not work to see what the damage is.  She is also going for a 2 hour appointment with rheumatology to hopefully get some help with the swollen and immobile joints.

I am inspired by Ryleigh’s renewed optimism and positive attitude.  In my eyes, it seems like she has turned a corner in her management of this disease.  Although she is not giving up on finding relief – she has decided to make the most of what she has now no matter what the circumstances.   She tried to explain to me her energy as the power points on a video game.  She has a limited amount of points for each given moment.  If she expends these points too soon then she does not have the energy to do the things that she wants too – visit friends and family, play with our dogs, go to mall, go out for dinner…etc. So she banks as many points as she can so she can do these things.   So, I am working on getting her some kind of mobility device (motorized scooter or chair) so that she can get outside and be more active. Although it seems easy – it is not. Paperwork needed to convince extended health that she needs it.  Possibly need a different vehicle.  Choosing the best device…I hope it does not take 6 months like her meds did.

We meet today with her GI doc – Dr. Barker.  Ryleigh is convinced these meds are not helping so we are pushing for the next plan of action.  I am looking into the possibility of a referral to Boston Children’s Hospital for a file review and possibly visiting there for a second opinion as they are the leading Children’s Hospital on Crohn’s disease.

So, we are not giving up.