Tag Archives: children

Another Mother’s Day

mother's day

I remember my first Mother’s Day as a mom.  Chloe was three months old.  We went to the symphony in the park.   My  memory has gaps – for a variety of reasons be it trauma, chronic stress, and grief.   But I believe I remember those precious moments because of the wonderfully, delightful, and mesmerizing baby Chloe was. Sitting under the shade of the tree and listening to the music she nursed and we cuddled.  I remember her big eyes and  beautiful smile.  The warmth of the sun keeping us cozy and comfortable.  Somehow, I felt this was a profound and special moment and it is why I remember it so clearly.

The next few years, my memory of the day celebrating mom is muddled by the everyday stresses of life working, parenting, taking care of others…there were no significant memories. However, I remember  the Mother’s Day just after Chloe had  turned three years old.   Chloe had been diagnosed with acute lymphoblastic leukemia.  This was a Mother’s Day when I was scared and frightened.  I remember how sickly she was and questioned how was I going to keep her safe and well She was diagnosed with cancer – even though the doctor’s said she has a treatable cancer, I was not sure how I would survive the pain of losing her.  The deep fear that my child would die is a memory I could not erase.  This was a day I remember thinking that being a mom is such a gift that is tenuous and fragile.  I would choose to celebrate being a mom -not my children celebrating me.   As the year passed, celebrating Mother’s Day had been a quiet celebration.  My mom had passed away and the girls were struggling with their health issues. The day would come and go without much fan fair and I did not mind.

Mother’s Day has changed for me now. It has more significance because I think about the half of my heart that is missing causing a emptiness that is unexplainable. This will be the second Mother’s Day without Ryleigh. The feeling a loss and despair does not get better with time and nor should it.  I am just learning how to be different. How to manage without that part of my heart.

Years before I had worried so much about losing Chloe to cancer, I would have never imagined life without Ryleigh.  In fact, I believed that  the rest of my life would be centered around caring for Ryleigh.   I would be Ryleigh’s primary caregiver as her illness was so disabling that she would need her Mom to look after her and care for her.  I had a deep, secret thought that Ryleigh would not have a long life.  Her illness and all the medications and treatments that had ravaged her body would have reduced her life expectancy. So, I had thought she might leave me before I left her.  However, I thought I still had time.  Time to love her more than ever, time to share stories, debate issues, experience living….

Although she is not with me physically, her actions, writing, and my memories of her continue to inspire me to live a life of purpose and be mindful of my presence in this world.  I continue to find her writing in odd places.  Her writing and thoughts about enduring constant pain and how she managed.  Her reflections on the world she lived.  She thought she was a burden financially, emotionally, physically; that she was taking so much from myself and Chloe.  How I wish I had let her know more often how she inspired me and helped me get through each day – she was not a burden she was a gift.

I have always felt that being a mother  a selfish act.  I chose to bring my amazing girls into my life. They did not choose it, I did.  I wanted to experience the deep love and connection of being a mother.  Loving Chloe and Ryleigh so deeply and unconditionally is my greatest blessing.  I feel selfish every day because of the great feeling of love and joy I experience by memories of Ryleigh and my precious interactions with Chloe.  My daughters have shown me the power of love.  The strength to endure pain, illness, fear, and isolation.   Through their challenges and triumphs they taught me to appreciate the mementos of life – not the typical achievements a parent wants from their child.  Their wisdom at even the youngest of ages has taught me to be mindful, loving, and patient.

A life changing moment for me happened when Chloe was four years old. She was sick from chemotherapy and asked me one day to play with her.  At this point, I was now a single, working parent and I had so much to do.  The tasks that I thought were important: laundry, dishes, vacuuming, lesson planning, marking….I responded by saying I would play with her after I finished the dishes.  She looked up at me with her bald head, steroid induced puffy cheeks, and her big, stunning brown eyes and wisely, yet so innocently said to me, “Mommy, dishes can wait.  I might not be here tomorrow.”  Children have such profound things to share with us. We need to listen more and honour their ideas.

Chloe continues to inspire and brings me joy.  Her love and positive presence helps balance the hardness my heart feels sometimes.  She has moved towards  her making her own  life  and is experiencing the joys and celebrations of creating a home for herself and her loving partner, Shem.  She has her fur babies to care for and has so much hope for the future.  How can I not be proud and celebrate the wonder and strength she has shown? Chloe demonstrates every day how to love deeply, live fully, and be mindful and present.  Her belief in healing, moving on, and celebrating the small moments inspires me to live a more daring life.   I am grateful every day for my brown eyed girl, that she survived so much and continues creating a wonderful imprint on my heart.  Chloe is a gift that keeps on giving…

This Mother’s Day, I will do my best to remember the truly precious moments my daughter’s have given me.  But, I will also need to embrace and honour my own sadness, loss, and loneliness.  My happiness goes to all the Moms who will receive phone calls, emails, flowers, candy, gifts, and hugs from their sons and daughter’s  this Mother’s Day. My heart goes to those mother’s that will miss those connections with their child as they will only have thoughts and memories to cherish.   You are not alone, and sadly there are many of us who understand.   My love and compassion to all of those that will find this day challenging.

The moment we have waited for…

Rare flowers
Ryleigh was officially engrafted on Tuesday and that enabled her to get some time out and about on the third floor. She ventured to the playroom that was reserved for her as she could not be with anyone else besides Chloe and I. Chloe and Ryleigh played air hockey and Wii…enjoying time together laughing and just having fun. It was pure joyfulness at it’s best.

In order for Ryleigh to be discharged from the hospital I had to make a new friend….Chester.

My practice buddy...who knew I would learn so many nursing skills! My mom would be so proud.
My practice buddy…who knew I would learn so many nursing skills! My mom would be so proud.

I had to learn how to properly change Ryleigh’s dressing for her central venous catheter or CVC, heparin lock her line (so the line won’t clot) , and change the ends of the line. In order for Ryleigh to be let out of the hospital in my care, I had to be able to demonstrate that I could do these three things. The nurses spent a few days guiding me through the steps and I was lucky enough to have Chester to practice on.

This morning I did my final “test” and demonstrated my new learned skills so that we could get the green light to be discharged. I packed up the room and it took 3 trips to the car to get all the stuff we had brought out of the room. I left the hospital this time feeling confident that this was a good experience (for once) and that Ryleigh is completely without pain and discomfort. It was worth all of the sacrifices the three of us have made. I am proud of how we all managed during this challenging time.

Ryleigh requested lasagna with all the fixings.  I was more than happy to honour her request.
Ryleigh requested lasagna with all the fixings. I was more than happy to honour her request.

When things go well it feels great! It has been surprising and I will admit strange that there were no major issues during Ryleigh’s stem cell transplant process. After all the heartbreaking news the last few years it is a different place for me to be feeling so relieved and confident that Ryleigh is going to get some relief. But, I will not question or waste a moment of the positive energy that currently drifts around the apartment.

Staying for six weeks on the oncology unit was bittersweet. I met some amazing families facing tremendously difficult situations. I met parents that were kind enough to let me into their lives and take the time to talk and visit with me. Being so far away from my family and friends…I really appreciated the time they took away from their children to listen to my ramblings and support me as I took a break from room 8. Many of the families experienced good news and results from the treatments they were getting. But sadly even all the amazing care, treatments, and love cannot keep a child with their family. It was heart wrenching to get to know a family and then in one night find out they had lost their little boy. The strength and and courage that families face here is so inspiring. I am grateful that I have two lovely, teenage daughters that have survived. I will never take that for granted and will spend the rest of my life cherishing and loving every precious moment I have with them.

Ryleigh is now a post transplant outpatient. She goes for her first follow up appointment on Monday. We spent our first night having enjoying our home cooked dinner and just being in each other’s presence in the apartment. Although her counts are good (somewhat normal) she is dangerously immune suppressed. One of the doctors explained that it is because her bone marrow is producing brand new cells that may not quite yet know their job. So if she is faced with bacteria or viruses her body may not know how to handle things. Until they get settled and her immune system is working well again she has to be careful. She has certain foods she cannot eat, I have to cook using strict foodsafe practices, and she cannot go out in public without a mask. We also need to keep the house clean and dusted. Chloe was a real help in getting the final things done on the apartment last night– dusting, vacuuming, and bleaching floor, counters, etc. I also got our car detailed — got rid of all possible contaminants.

All is well in our world right now…great to be able to say that. At least 4 more weeks in Vancouver and then we are planning on heading home!!! Blessed we are.

Waiting….Waiting….Waiting….

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I have been told in the past that I have the ability to show lots of patience…however, this time my patience is being tested.  It is an odd experience waiting for your child’s bone marrow to stop producing the cells that sustain their life.  As we are now a week into Ryleigh having her infusion of cyclophosphamide, it is odd for me to think about what is happening inside her body.  She has also had four injection of the  granulocyte colony-stimulating factor or G-CSF.  Hopefully this is stimulating her bone marrow to create lots and lots of stem cells so they can harvest on Monday.  Then we have to wait and see when she can actually begin the steps towards transplant. Ryleigh has been amazing…handling the injections with courage and accepting the changes more calmly.  She seems relieved about the process.  I believe part of it is because there is a protocol and she knows what may come next.  Unlike last year, which was a series of mishaps and complications.  Even now, she knows there will be complications but she is aware of the typical ones and can mentally prepare for it.   We have been waiting so long for Ryleigh to get some relief from her IBD that a few more days/weeks should not seem like an issue.  But, I am a little antsy…

Chloe, Ryleigh, and myself are taking this time to rest and prepare for what is to come…and if you know me, hanging out and resting is not an easy task for me.  Chloe and Ryleigh are good role models for me as they know how to rest and keep whatever energy they have reserved for when they need it.  My experiences over the last few years have resulted in going at a pace that is constant.  Hitting the brakes and resting is a challenge…how weird is that?  That being said, I do admit that resting is hard to do when I have so many worries on my mind.  Being distracted by work, chores, or other tasks helps keep the worry away – worry about the transplant, the emotional well being of my family, finances, my own health, Chloe’s health, etc….I try my best to be mindful and take the worry as it comes but sometimes it is so overwhelming! 

Luckily, I have the strength to deal with these overwhelming moments and persevere…next appointment is 8:30 on Monday morning — if Ryleigh’s counts show lots of stem cells — harvesting is a go!  Fingers are crossed.