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.
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