Category Archives: Challenging Times

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.

Forget Me Not

As we move into another season I am surprised by the sea of blue flowers adorning my flower beds and yard.  These were Ryleigh’s favourite flower and every time I go out in my garden it seems like the amount of blossoms have doubled.  Just the other day I saw a beautiful butterfly.  I can feel Ryleigh’s presence and so I am spending many hours outside. As I tend to the garden I reflect on all my precious moments as a mother – with Chloe and Ryleigh.  The last eight months has been very painful for me.  The hurt that comes from your children leaving you in ways that are not expected is unexplainable.  But through unconditional love for my daughters I can overcome the heartache and learn to embrace the calm and serene times. Forget Me Not

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.

Mom, your stepping on my I V again!

Anyone living, working, coaching, teaching, existing with preteens or almost teens knows that it takes loads of patience to understand the perspective the said youngster is experiencing. Their view of the world is slightly different than the rest of us. I am not saying is wrong just different. Now, my darling daughter, Ryleigh, is typically a witty, intelligent, fun loving, energetic and kind child but combine puberty with crohn’s and it is perfect storm of mood monster. Now, I totally understand that she is really sick and by all means she has a right to be miserable, irritable, cranky, snippy, and emotional. My goodness I sure would be –but my ability to keep my emotions and verbal retorts in tact has been tried. But, for the most part I held it together, leaving the room and giving us space seems to help except when I am gone too long and she needs me.

Ryleigh has developed a super sensitivity to her IV, this is not only a physical issue but an anxiety driven situation. It is not her fault she is anxious because earlier this week she did have an IV become interstitial – which means for whatever reason it was not in the vein but in the skin (I think that is right – still learning all the lingo!) It was very painful but she only made a few comments and the nurses believed it was just the typical stinging one feels when the fluid\medication is first put into the IV. Nevertheless, it took quite awhile before they realized that she had an issue. So, she had to have another IV put in her other hand. Now this shows Ryleigh’s patience and understanding- in having to go through another IV insertion.

Now this new IV is working fine The nurses here routinely check the site every hour. It is good. However, my patience is tested any time I am near the IV or IV pole. Again, not because of her but me. Ryleigh needs help getting to the bathroom – which for her can be very often. During this process I am responsible for unplugging, pushing the pole, and helping her navigate to the bathroom which is only a couple of meters from her bed. She is very weak and cannot push the pole by herself and so I am the pilot. Well, this pilot has crashed and burned many times – I turn the pole the wrong way, knock the machine, have my toe close to or on a tube or cord, or even trip over it. She is very concerned something is going to happen to her IV. So of course I hear about it from her…not all sweet and witty either. But, nothing has seriously happened to the IV and I just let the verbal barbs bounce off me.

Small Victories!

Victory #1:
The up swelling of support from friends and family all around the world! The contact and comments of support, love, and kindness help me manage my own feelings of homesickness, fear, helplessness, and isolation. I look forward to seeing the icons that I have a message or a comment from someone I know. Especially when I am in a room with a very grumpy, sick, moody preteen. The escape to the IPAD (thanks so much Dan as it fit in my purse!) is very helpful when Ryleigh just wants me to leave her alone! Also, the expert advice from my dear friend Holly who has a son that suffers from this disease also. Her priceless advice, calm voice, and caring words helped me get through a few darker moments today!

Victory #2
Prednisone – a steroid that helps decrease inflammation. Ryleigh responds well to this medication as it seems to be the only thing that slows down the flare. However, it is not a medication that can be taken for extended periods of time. The side effects are too damaging – the one that Ryleigh is most fearful of is stunting her growth permanently. They are discussing the fact that she may be a small part of the chron’s population that is steroid dependent in order to get better. She is getting the steroid through an IV and as a result it can help her more quickly. Right now it is helping her be more comfortable – maybe it will be the first piece of the puzzle for recovery.

Victory #3
Crohn’s disease is a tricky one to figure out – that is the message I got from the specialist today. I had kind of figured that out but was reassured to hear it from an expert. He confirmed that Ry’s current experience with the disease is not the typical response. He said many kids who get the disease can be treated with the basic medications – all of which Ryleigh is on. When Ryleigh experiences a severe flare like the last few months – traditional medications do not help. But, she is receiving one of the best medications to reduce her symptoms – Remicade. She will get her 3rd treatment tomorrow with double the dose. We hope the third time will be a charm!

Victory #4
Traveling to Vancouver with only my purse and some smuggled underclothes, being without some basic outfits was a bit challenging. It is hard to have intellectual conversations with the medical professionals when it feels like I have been camping out for days! But the benefit of social media such as Facebook has me connected with a classmate from my high school days in Osoyoos. Yes, that was over 25 years ago! She messaged me through facebook and offered to give me a ride to get some basic changes of clothing. We went to the Costco in downtown Vancouver – a very different experience from the Prince George Costco. But, I found some pj’s, some comfy pants, and hoodies. I am now ready to manage in the hospital – no more camping out clothing strategy!! (They frown upon rinsing, washing by hand, and hanging clothes in the hospital room!) Thanks so much Michel, not only was it helpful but a great chance to reconnect and learn about all the interesting things you have done with your life. What an angel you were to help me out.

Victory # 5
The scariest thing about the last 6 weeks or so has been Ryleigh’s reluctance to eat or drink. She feels so miserable that the thought, smell, or sight of food is not something she wants to deal with. Over the last week she has lost 4.5 pounds – something her body cannot lose. The doctor told her today that if she cannot eat or drink more on her own she will need to have a feeding tube – something that she is very scared of and I will admit it makes me feel a bit squeamish. But, even if she only uses it for a few days it will help her get some energy back. All day I have been asking her what she would like to eat, can I get her something yummy to eat – brownie, burger, sandwich, yogurt, ice cream, jello, cookies, apple, fruit cocktail, NO NO NO! Frustrating….but, the wonderful thing about BCCH is that they let their patients choose what they want to eat. She chose her own supper and when it arrived she ate! Granted it was only 4 bites of shepherd pie and a few spoonfuls of peaches but she ate! It is a start – a small victory.

When you are immersed in the poor health of your child – whatever it may be. It can overtake all of who you are feeling like the weight of the world is on your shoulders. Everything can feel unmanageable and that things are going to spin out of control. When the spinning gets faster, I have learned that you need to stop and take a breath and think about the small victories that happen in a day. Each small victory leads to another and then it ends up being a truly victorious day! So I end the day realizing that it was a good one – I look forward to the small victories tomorrow! Until then…..remember to appreciate the small victories in your world.

A Journey of Hope

We are settled in a Vancouver hotel the night before my daughter’s second treatment of Remicade to help manage her Crohn’s disease. There is no cure for Chron’s but this may help her feel better. It is a challenging disease because every persons symptoms and treatments are different.
She is nervous about the I V needle. But she is a champion. My eldest daughter says that I may not be a soccer mom but I am definitely a hospital mom. In fact, both my daughters should receive allstar trophies for their courage to deal with both their chronic health conditions. I am a proud but weary mom

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