Parenting & RA

Although Rheumatoid Arthritis Guy is not a father at the moment, he hopes to one day have children. At times I wonder to myself, how can I possibly live with rheumatoid arthritis and be a parent at the same time? Sometimes is seems like too much of a challenge. But as with everything else, I know that the right mindset and the right attitude do make everything possible.

For me, one of the true treasures of connecting online with others who live with RA has been being able to read their personal stories and see the way in which they are able to manage being a parent and living with RA at the same time. I am sure it’s not always easy (I doubt parenting in and of itself is always a snap), but these super parents show me that my dream of being a parent can one day be achieved, in spite of the illness with which I live.

As I cannot currently speak first-hand about what it’s like to be a parent living with RA, Cathy from The Life and Adventures of Cateepoo kindly offered to write a few words on this topic. Please welcome Cathy, our guest-blogger for the day!

Children of RA Parents are True Superheroes
By Cathy

When my children were younger, they loved pretending to be superheroes.  At age two my son wore Superman pajamas every single day.  When people asked why he had on his pajamas at a restaurant, I casually replied, “Those aren’t  pajamas.  He is wearing his superhero uniform.” One of my daughter’s first words was “bat” for Batman.  She wore a little Batman t-shirt because like her brother, she wanted to be a superhero.

Although my children who are now 13 and 11 have grown out of the dress up phase of being a superhero, they have not given up the spirit of a superhero.  Since being diagnosed with rheumatoid arthritis five and a half years ago, my children have proven over and over what a superhero spirit is all about.

Like all superheroes, my children have a weakness which we learned early on in my diagnosis – it is me.  They don’t want their momma to feel pain and when I do, they feel insecure and uncertain about how to rescue me.  During one of my early days of RA symptoms my then six year old daughter came to me and asked, “Are you going to die momma?” Oh my!  Since that day I have been fortunate to watch them discover their individual powers so they can feel strong while battling this disease with me.

Below is a list of strengths or jobs my children have discovered to help them fight the evils of rheumatoid arthritis.  Not only have I been able to facilitate in this discovery of superpowers but I have been saved by them.

Education

Once the symptoms of rheumatoid arthritis affect your body, it is something you will be dealing with off and on throughout life.  My children were six and eight years old when I was diagnosed.  Although they were fairly young, they both wanted an explanation of what was happening to my body.  I gave it to them.  I explained what RA is and answered each and every question they had.  Many of those answers were, “I just don’t know yet.  We are going to have to wait and see.” Each step along the way has been discussed.  We have gone with the theory that the more we know, the more strength we have in defeating this disease.

Emotional Support

Until recently, my children were with me almost 100% of the time. We homeschool, so they are home during the day. When I was first diagnosed they were too young to stay home alone but were used to attending dental, hair, and any other appointment with me. So, when I needed to go for visits to the rheumatologist, they went with me.  As they aged and were capable of staying home alone, they still opted to go with me to this appointment.  My son said, “Mom, you always feel sad when you see the rheumatologist and I want to be there with you.” It is a challenge to realize that your child is watching over you and trying to protect you from harm.  But, I also discovered he needed to be my protector. It gave him a job to do in fighting what RA was doing to my body.

Food Police

When I saw the naturopath for the first time the kids were invited to the appointment.  She wanted my whole family to play a part in my healing process.  My husband and children learned what foods were on my approved list.  Believe it or not, if it weren’t for my kids, I would not have stuck to the diet as well as I did.  I remember once making a homemade taco braid for the family while I planned to eat something else.  It is out of this world good.  I thought I would just have a small piece of the breading (gluten was not on my approved diet plan).   Sophia (then 7 years old) blocked me from eating it.  She got tears in her eyes and reminded me that we had to stick to the diet to see if I would feel better.  After a year of eating gluten free and slowly removing gluten from our house, my children are now about 90% gluten free too, only having it at friend’s homes.  This change which they made voluntarily has made gluten free eating so much easier for me.  When there are not temptations in the house, I can handle this diet.  Plus, the eczema my daughter had been dealing with since she was six weeks old magically disappeared and my son’s leg aches – gone!  The diet was working for all of us!

Personal Dressers

When I have a flare-up in my shoulder, it freezes up and will not move.  Any movement causes extreme pain.  So, getting my shirt off and on by myself is near to impossible.  One day my daughter said, “I don’t like when you are in pain, but I like being able to help you.” Each night before bed one or both of the kids would help me out of my shirt and into pajamas.  I think like most of us, just sitting without a job makes us feel helpless.  For my children, this simple gesture of help made them feel like contributors in my healing.

Cheer Leaders

After four years of taking RA medications, I decided to stop all medications (Plaquenil and Methotrexate) and follow a 100% alternative path.  It was really hard in the beginning.  My body threw a temper tantrum which included striking out at each and every joint in my body.  It was awful.  My daughter created a system of faces to determine how I felt each day.  First thing in the morning she would ask which face best described how I felt.  Then she would mark it on the calendar.  Not only did this let her know what to expect from the day, but to our amazement my daughter one day announced that I had more good days than bad for the month!

Each time I have a setback my daughter says, “Let’s think about the good days.”  Talking about the good days with someone that loves me so much automatically makes me feel better and fills me with the desire to keep working at having more good days.

Helpers

I have always encouraged my children to be active members of our family.  As early as 18 months old they would sit on my bed and help me fold washcloths.  As they grew older we added other jobs.  I have always felt children needed to feel they contributed to a family.  Never did I imagine the responsibilities they would take on.  Now 13 and 11, my children automatically pick up grocery bags as we check out so that I don’t have to lift them.  My son is taller than me now so when my shoulder is in pain, he runs to put dishes that are out of my reach away for me.  They carry laundry baskets and walk the dog when I can’t.  Truly, I am one lucky momma to have all the help they give me. Best of all, it never comes with anger or frustration.  They know that on days I can, I will do the work but on days I can’t, their love for me takes over and they just do what needs to be done.

Laughter

We have to learn to laugh at ourselves when dealing with rheumatoid arthritis.  I have had numerous situations of dealing with rheumatoid arthritis where we had to just stop and laugh.  There was the time I was making some improvements and did a little dance off the front porch while my family waited for me in the car and then ended up falling and scraping my knee.  Instead of crying and feeling bad, we were able to laugh about it.  Then there was the time I was stuck in the bathtub while my husband was at work and the kids tried everything they could think of to get me out.  Again, we ended up almost crying we were laughing so hard. Sharing a good laugh over something so terrible can be liberating.

My children have had to take on a lot due to my rheumatoid arthritis.  Do I sometimes feel like I am a burden to them?  You bet.  Do I sometimes feel sad that I am not running and skipping with them?  You bet.  Do I sometimes think they have to take on more emotionally than I ever wanted them to take on?  You bet.  But, we are a family.  And family helps each other.  I have learned much from my children.  On more than one occasion they have reminded me that I do a lot for them and it feels good to be able to give back.  They have reminded me that although we can’t run and play as we once did that I still hang out with them and remain an active part of their lives which they like.  They have reminded me sharing our feelings with each other is important.

Children are strong.  I think we often want to protect them from any harm but my experience as a parent with rheumatoid arthritis is they want to know the truth of what is happening and they want to play a part in our healing.    Unfortunately, rheumatoid arthritis is not a private disease and when we can share the load with those who love us, the journey is so much easier.  Our children have amazing abilities that can only shine when we allow them to show their true superhero powers.  In my experience, our children don’t disappoint.

Thank you so much Cathy, for writing this post! I look forward to hearing more from other parents who are also living with rheumatoid arthritis.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy and Cathy!

14 Comments
14 comments
  1. Diane says:

    What an interesting and enlightening topic today [as usual of course, I'm so grateful for your blog]
    I developed RA when my son was 5, and I mourn the times when I’ve been in too much pain to be my normal self for my son. For years I have been unable to kick a football around the garden with him, or ride a bike with him, play catch [my wrists are too waek and sore] – so many things other parents take for granted. But my son has been so patient, understanding and always ready with a hug when I’m suffering. Even now, he’s almost 15, and a true support. He fetches and carries for me, chops the veg for dinner when I need him to, and never complains. I try not to be a burden on him, and try to be a “normal” Mum. We are both so used to my RA its totally normal to him. I have been lucky enough to be able to afford to reduce my working hours, with some household adjustments of course, and have had the joy of spending more quality time with him. Had I not developed RA, I’m sure I would have continued my punishing work schedule, and I would have missed almost 10 special years seeing him grow up. RA has its benefits after all!

  2. Jules says:

    Cathy, you have done a beautiful job with your children. I know quite a few people who- in an effort to “protect” their children from the harsh reality of living with this kind of adversity (not all have RA some have other challenges)- hide it from them and don’t talk about it, but then complain that noone understands. I took your approach. Even though my son was considerably older when I was diagnosed, I included him in everything from research about the condition to treatment alternatives.

    RA Guy- our children take our cues from us. If we are closed off and secretive about our disease- they won’t understand and they will expect us to be just like everyone else. If we are open with them and honest about Mommy or Daddy’s challenges and what we live with- that will be what they see as “normal” for their parent. It doesn’t mean that they will expect their other parent or friend’s parents to be that way too- but they will understand that this is part of you. They won’t love you any less or see you as “different” unless you treat it as so. Children are so incredibly adaptive and capable of so much more than many give them credit for. And parents like Cathy raise them to be loving, compassionate and helpful human beings who are accepting of someone’s struggles, something not all children have the advantage of learning at a young age.

  3. Linda C says:

    Cathy,thanks for sharing. You are a remarkable family.

    This reminded me of my daughter-in-law and how her whole family deals with her major kidney problems. The kids are also home schooled and go to doctor appointments.

    Remember everyone, there are millions of families dealing with all kinds of illnesses and challenges. You are not alone!

  4. Vicki C says:

    Cathy (and RA Guy) thank you for this wonderful view of the “other side” of parenting with RA. I have three children: 16, 14 and 9. One of the saddest days of my life was when I had to stop coaching my middle son’s soccer team. That was OUR time…me and my monkey in the middle. And I loved it. I remember many a morning when my oldest child, a daughter, had to play “Mom” and help me dress her baby brother because my hands were too stiff and swollen to do snaps and buttons. I also remember many times where she would have to help dress me…and the associated “guilt” involved in realizing the role reversal. But now that she is 16 I see a young lady forming who is kind, compassionate and loving. Traits formed by her early years of caretaking for me and her brothers. (not to mention her own battle with Leukemia…during which I don’t think I ever heard her complain!). My youngest is 9 and all boy and now that I am officially “disabled” I am too mourning the loss of my vim and vigor! I’d love to be able to climb mountains and trees with him but I must appreciate the view from the bottom. But I will always be there to appreciate the “view” – of all three of them. They are my light and my life….and I cannot imagine a day without them!

  5. Kim H says:

    Great post. Being childless, I initially thought I’d just skim it, but it was so well-written, interesting, and informative that I kept on reading. Thanks!

  6. Millicent says:

    Cathy, Your children will grow to be caring, contributing adults, & they surely know the true definitions of ‘love’ & ‘family.’ Blessings on all of you, & thank you for sharing this post.

  7. Cathy says:

    Thank you so much for this post, and also for the comments I just read. I have a 20-month-old son, and I found out I was pregnant with him the same week I learned I had RA, so I’ve never been a parent WITHOUT this disease. I’ve often felt sad and guilty about what his life will be like – even now, I feel that there are far too many days when we don’t go out, and too many things I want to do with him but can’t. This post reminds me that I will also be giving him something important – the opportunity to become a compassionate, loving, caring person. I have always intended to be completely honest with him about my disease when he is old enough to understand, and even now, I talk openly about it in front of him, take my meds in front of him, etc. He also comes to the rheumatologist’s office with me most of the time. Thank you for helping to remind me that this can be a good thing.

  8. Lana says:

    Cathy –

    This is absolutely beautiful. I still have tears in my eyes. You have such wonderful children and you have done such a good job raising them. It is amazing the differences between children who watch a parent struggle than those who do not. I see it in my nine year old. My son has really changed since my diagnoses and not better, not worse, just different.

    It is going on two years for me with my journey with RA and Fibromyalgia. My older son is nine and a half and the baby turns a year old next month. The hardest part for me is dealing with the fact that the baby will never have the same mother that my nine year old had. What I have learned is that parenting is not perfect. We all learn as we go and with the cards we have been dealt. I watch my nine year old see how I have changed since my diagnoses of RA, Fibro and Chronic Fatigue Syndrome, and as much as I wish I could protect him from seeing the person I have become, I know that I can’t. I also know that by the time the baby is nine, I will have had to change my lifestyle to accommodate the progression of RA and the worsening of my conditions. I may not be able to enjoy the same activities with my baby that I did when my nine year old was younger and emotionally, I am not the same person I was back then.

    Rheumatoid Arthritis and Fibromyalgia have also changed me and I hope, for the better. I have always tried to be strong in front of my children, but I know that my weakness is more evident these days. My nine year old told one of his teachers that he knows that his mom’s bones hurt and that he wished that they didn’t. He also wondered if there was a medicine that would stop them hurting and if there isn’t, perhaps, when he is older, he could invent one. When I heard this I broke down because if anything could make weak, it would be my love for my children. This also made me wonder whether I am strong enough to conquer anything and everything. Am I, as a parent, required to be unbreakable or always be confident about myself, about my parenting skills and about preparing my children for the world? I guess the answer to that is that we are all learning as we go. I think I have learned more from my children more than I could have learned from my own parents, other parents and even the so-called parenting experts.

    RA and Fibro are on some days a big downfall from me, but I make do and I take the good days over the bad. I fully understand that my condition is going to get worse and it scares me. It scares my nine year old who keeps asking if I will end up in a wheelchair. I try to answer his questions as best as I can and as honestly as I can, but I am not always sure he understands or that I even know the right answers.

  9. Amanda says:

    Thank you both for this post. I don’t have kids (yet) but love how you’ve been so open with them about it. I would imagine it’s a lot less scary for them this way too- they know why Mom always hurts, there’s no question and nothing left up to speculation in their minds.

  10. cateepoo says:

    Thanks to all who read this post. I think with any challenge we take on in life, we learn how strong we really are. For me, I have had the joy of not only learning my own strength, but also the strength of my children. Reading your comments, I know we have all had to give up a lot of the things we wanted to do with our children, but we manage and we find alternatives. We don’t stop being a part of their lives and that is what really counts. The stories you have shared are beautiful. Thanks.

  11. Pamela C says:

    I so enjoyed reading each of your stories. Like the second Cathy, I have never been a parent without RA. Actually, diagnosed with JRA at only 4 years old, I have never been a person without RA, at least not that I remember. Since this disease has been part of my life for my entire life, I think I am luckier than most. I don’t have the memories of “before my diagnosis”. Becoming a parent and teaching my 3 children about the disease just came naturally to me. Just remember that there will always be good and bad days and our children adjust with us. At 13, 10, and 7, my kids have developed their own distinct roles. The oldest, my only daughter, keeps the house moving at its normal pace. My 10 year old son is the strength. He takes on all the lifting and carrying and helps his sister carry on everyday tasks. My youngest son is the nurturer. He seems to always be by my side with soft hugs and words of encouragement. Do not let RA stop you from becoming a parent. I cannot imagine life without my wonderful 3 children!

  12. Anita says:

    Thank you for this blog post and for those who have left comments. I have RA, fibromyalgia and Chronic pain syndrome. I’d love to be a mum, and my wonderful husband would be a lovely dad, but have been so worried that I would be a naff mum because of how I am each day :( We have been thinking of adoption, but would be so sad if they said no …
    I respect all of you for the wonderful parents you are, to your lovely children.

  13. Ariel says:

    Thank you for sharing this story. My mother was diagnosed with violent onset Juvenile Rheumatoid Arthritus when she was 13 years old. I grew up with a mother who was 25 already years into a journey with a chronic degenerative disease when I was born. I don’t think I need to say a lot about the details because your story sounds so familiar to me it can almost go unsaid.

    I don’t know how much what I will say in this response will resonate for you… please remember that everything I am sharing in this has everything to do with me and my experience and hopefully will be helpful in your journey with your family and this disease.

    Its a mixed bag being in that position as a child. I want you to know that it sounds like you are doing a wonderful job with your children. The very best you can. They are going to be strong, resilient, and marvelously compassionate people. They are going to need each other immensely as they get older… because it will be incredibly difficult to find companions who will be able to really understand what it was like. They will sometimes blame themselves for your pain, they will feel helpless that there is nothing they can really do to make it go away… only help. They need to know that THEIR life, and THEIR journey is the most important thing, and to not give more than they can give. They need to know that your pain is your pain. It is not really their pain… and they don’t need to hold it for you. As your jouney progresss be realistic about your abilities, seek the help that you need before things get too hard and an emergency arises, and your children feel they need to drop their trajectory to save you. Your family journey will be mythic. Overwhelmingly beautiful and full of exquisite pain matched only by joy. Blessings on your journey. And Blessings on your family.

    Thanks for reading this.

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