“A letter to my daughter”- A Mother’s Perspective of RA

The following post is not written by me, but my mother. It is a letter written in her own words on what her life has been like while I’ve had Rheumatoid Disease…

Dear Christine,

I am writing to let you know how my life has been in my first year of retirement but more importantly how it meshes with yours. After losing my high paying job, moving to AZ and working with special needs children in kindergarten  I realized it wasn’t all about the big bucks. The AZ job was truly rewarding. Being able to work in a rural school district two minutes from my home, flying planes, riding motorcycles and enjoying desert life was so much fun. After hearing about your decline in health I felt the need to be there for you in Hawaii. So after 6 years with the school district I returned to Hawaii to live back in a truly remarkable location: the beach house. However it hasn’t all been sitting in that hammock sipping  Mai Tai’s. Oahu is expensive, crowded and the endless clogged arteries they call freeways were a shock after being gone so long. But it was all worth it being closer to you, being retired and being able to help you.

As I watched your health decline with RA it became the norm to sit long nights in the ER, constantly visit doctors, sometimes 2 to 3 times a week, and put 90 miles on my car daily was not unusual. Pharmacies, doctors visits, procedures and tracking the huge volume of paperwork that were associated with your illness. Working for American Express or FHB or even shuffling investments for 10 financial planners seemed easier compared to how  I became bogged down with trying to help you with your filing. 

My car tracked how many hours I had been driving and for the small island of Oahu 5 hours was often too long to be in a car with your nausea and side effects from the infusions. We went through so many different experiences from being trained to administer injectable meds, to long hours in hospital drug infusions centers. We have been through a lot. It has been a challenge and a difficult one.

My partner feels I do too much, however I disagree.Your father has failed to turn up to one infusion center as promised and this saddens me. I have filled the gap that was left. Back-up has not been there. Promises of rides have been a waste of time. You were told to catch a bus with a cane and narcolepsy, I don’t think so. He may have vowed to care for me in sickness and health, but this certainly hasn’t trickled down to you, our only daughter.


Sometimes I feel sad for what you are missing. I see women jogging by with their strollers, families with kids in tow, and I know the life you have without the purpose employment brings is a challenge. I want you to know I’m there for you. I may come and go in attempt to enjoy travel and adventurers that time now permits. I may not always be available every day but with mutual respect and love we will get through this. I admire the tremendous courage you show, the ability to push on through the hard days and the optimism you show for a chance in the future for remission. I respect your independence and hope that the future becomes brighter and allows you to live as before with the lifestyle you deserve. Financially it has been a huge struggle and I know you are grateful for the accommodation you have received. It will get better, I can feel it. Stay on track and respect those kind people that have stepped forward to help you… mentally , physically and financially.

You are a wonderful lovable girl and we all want to see you shine especially me.

Love Mum.

If you would like to help me become more financially independent, please donate to my fund, every little bit helps:

Christine Lilley’s Life Fund

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About sixthousandsteps

In March of 2013, I was diagnosed with chronic Rheumatoid Arthritis and was told my disease was very aggressive. Every day since then has been an ongoing struggle and life lesson on how to stay positive and keep fighting. This blog is a glimpse of how it all came to be, and who knows what the future holds.

Posted on July 7, 2015, in The Journey and tagged , , , , , , , , , . Bookmark the permalink. Leave a comment.

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