Parenting a Sick Child is:
- missing Christmas concerts for surgical consultations;
- rarely sleeping beside my husband;
- 3am gtube feeds;
- 10 texts a day with nurses;
- tracking every ml and calorie;
- excitement over cheap medical suppliers;
- rescheduling lunch more than twice;
- the exception request form;
- forgetting your best friend’s child’s birthday party;
- 13 migraines a month;
- no hair cut in 4 years;
- $40,000 in medical debt;
- neglecting your healthy child;
- surgeons knowing her by name;
- too much fast food;
- laundry living in baskets;
- employers with compassion fatigue;
- trick or treating in ward 3B;
- replacing novels with medial journals;
- navigating hospitals easily;
- editing out;
- fighting about treatment plans;
- notes left on the kitchen counter;
- 2 dates a year with your partner;
- not needing to say I love you;
- knowing tomorrow will be harder;
- getting out of bed to fight another day;
- seeing a 5 year old pull through what few could;
- gratitude for simple days at home together.
my rare child 
We are in very different but still similar worlds. It is almost 4 years since Mathew first started showing symptoms of what would later be diagnosed as Ewing’s Sarcoma. I read between your lines and see what isn’t printed and still marvel at how poignant and shattering your posts are. I haven’t posted to my blog and find it increasingly difficult to do so as Mathew’s health is now slowly declining, in increments. It is 3-1/2 years since his diagnosis when our world changed. It was last June that the Oncologist determined our son would have months to live, maybe a year.
All of those points you bring to light we have walked through. We have been incredibly lucky on the medical cost side; in Canada all of Mathew’s care, chemotherapy, hospital stays, medications, etc, have been covered. I cannot even begin to imagine the added stress of medical bills adding up still to be paid.
I am not as keen to put my emotions and feelings out there for all to see. People in my family and at work read the blog and I don’t want to share everything anymore. They can’t understand what it is like to see your child suffer and slowly die. In the same breath I wish no one this terrible chain of events we are living.
Individually and as a family you end up in a solitary world. As you said, missed events, meetings and get-togethers. When I do go out I worry about Mathew too much to be away for long. I don’t always want to hear about the light and happy mood around me. Others don’t understand why I can’t just feel good and cheer up for a while. Seriously? SERIOUSLY??
My head knows what is coming. My heart does too, but it is slowly cracking when I see little changes occurring, such as Mathew’s appetite waning, or not wanting his favourite foods; not wanting to go out much at all and losing interest in the world around him. My heart is going to shatter one day… and I wonder if all that will be left is an empty shell of what I used to be.
You have another child, an older one than Red? Does she receive any kind of counselling or therapy? I ask because that is my one regret about my daughter throughout all the years before Mathew got sick. He is developmentally delayed, mildly autistic, etc, so our life before cancer was no picnic and it was harder on Kristen than I imagined. She has had counselling on and off over the last 2-1/2 years to help her through losing her only sibling to cancer.
My thoughts are with you through the seasons.
I have been thinking of you and wondering how you and Mathew were doing. I am so sorry to hear that his prognosis is not good — that a real sense of loss is in you now. You’re right, it’s hard for people to understand what it’s like having an ill child. I have very few family and friends who read the blog so its easier. Our eldest is only 6. We haven’t sought out counseling but I suspect we will when she’s a bit older. The toll of having a sick sibling is so weighty on a family. I am not as focused on her as I should be and it’s not fair. I hope your Christmas was as good as it could be and that Mathew found pleasure and comfort in simple joys. I am in Canada — if you ever want to talk more let me know. I’ll message you my contact information. Love and light to you all. xo
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