Voices Of RA: The Mom

RA Guy mom shirt

Rheumatoid Arthritis Guy as a kid, proudly wearing a gift from his mom.

I am at the half-way point of my month-long visit with my son, RA Guy.

My husband and I live in a different continent than our son so the only methods of keeping in touch with him are through phone calls and/or emails.  Although, I must say that since he moved here about 7 years ago we’ve been fortunate in that we’ve managed to see one another on numerous occasions during each passing year – he’s either visited us at our home in Texas or we’ve met in the San Francisco area, we were together at our daughter’s wedding in Missouri, we visited him here a few years ago, and once we even met up in Paris, France for a vacation.  I was so glad when he started his blog because it offered me a way of daily keeping informed of his rheumatoid arthritis.

This summer the day-to-day postings of my son detailed the chronic, daily RA problems he was experiencing and my heart ached for him.  This had been occurring since November – it had been months.  I cried as I read his postings that detailed his worst flares.  It was during one of these days that I was on my computer reading my son’s posting for that day that my husband walked into the office area of our home and I turned to him and told him that I thought I needed to come visit our son…right away he responded, “Go ahead and go if you feel that you need to go.”  So I made plans to come visit him as soon as possible, although my husband and I have plans of coming for several weeks later in the year and spending Christmas with him and his husband.  Maybe there wasn’t anything that I could do to take away his suffering and his pain…but at least I could come and just spend time with him to support him through his daily struggles with RA.  When I called to tell him my plans I told him I didn’t want to come do any “tourist” stuff – I just wanted to come spend time with him, sit with him, cook for him or just do whatever there was that I could do for him to help him through his daily struggles with RA.

As a parent I wish it was within my power to control my children’s sufferings, yet that is not always the case.  As a parent I will do almost anything to help any one of my children, yet there are times when there is nothing more that we can do…as is the case with a chronic illness.  It was during these times that my only remaining resort has been praying for him.  I believe prayers to be very powerful.  My husband and I have a daily habit of praying for all of our children and grandchildren.

Four years ago when I turned 60 our children surprised me by all showing up at my home on my birthday and also planning a surprise birthday party for me that weekend.  Quite a feat since 4 of our 5 adult children all live far away from our home – 2 out of state and 1 out of the country.  That was the very first time that I saw my RA Guy son standing on two crutches and it was quite a shock! – he was only 32 years old at the time.  Less than a year later I had flown to San Francisco to go spend time with him (before he left the country again) while he was there for a brief period of time following his sister’s wedding in Missouri.  At the wedding I’d been happy to see that he was now using a walking cane instead of the crutches – an improvement, I thought…signs to me that he was doing better.  One day, he and his partner and I were walking  in the Mission district of San Francisco, doing some shopping and browsing, when all of a sudden my RA Guy son stopped and could not go another step – he was in a great deal of pain and couldn’t walk further.  I stayed with him while his partner went and got our car and picked us up.  My first experience of how RA flares could suddenly appear!

Two years later, in February 2008, three of our adult children came home for a visit to see their grandmother who had been quite ill – our RA Guy son was one of them.  He stayed on longer than his two sisters and we enjoyed his extended visit very much.  He was going through a relatively good period with his RA at the time.  We visited relatives and he and I went out shopping together for things he was taking back to his home.  During that week my husband celebrated a birthday and our RA Guy son shopped for and prepared all by himself a lavish breakfast for his father.  Our son has always enjoyed cooking and would make a great chef.  One year later, in March 2009, our RA Guy son once again came to visit us – this visit, however, was very different from the year before.  He required a great deal of bed rest, sleeping most days until noon.  He had flares-ups in his ankles and hands.  We couldn’t plan on going out to visit relatives or do any shopping because we never knew how he was going to be feeling, whether he’d be physically up to it or not.  This time he didn’t do any cooking…something we knew he loved to do.  The changes that his RA was having on him were clearly visible.

Shortly after returning to his home following his last visit with us in Texas, our son started this blog and has been documenting his life with RA.  I have always been very proud of my son – ever since he was a little boy up until now to the man he’s grown up to become.  I know that all parents believe their child to be “special” and I’m no exception, except that I had affirmation of this fact from a psychologist at the University of Texas in Austin who tested our son when he was only four years old.  I’ll never forget the day she called me into her office to give me the test results  and told me that he was a “special” child – that his IQ was very, very high and that “someday he would do great things”.  Yes, my son has RA, but that doesn’t change who he is.  I continue to be very proud of him and what he’s accomplished in his life.  I have read the responses he receives on his blog and I know that he is touching many lives with it.

I’m a believer that sometimes things happen in our lives and we don’t know or understand why – yet I believe that there is a reason for why things happen…good or bad.   Out of the worse things that can happen one can look for and find some good in it.

These past two weeks that I have spent visiting my son have been very special to me.  I have always enjoyed my visits with him.  I’ve been able to go with him to his physical therapist appointments and this afternoon I am joining him at his psychologist’s appointment.  We’ve had the opportunity to do some light yoga exercises together once.  I sat by him and cried with him one evening during one of his most difficult flare ups since I’ve been here.  It isn’t easy (in fact it’s very difficult) to see ones son suffering in pain, still I wouldn’t have it any other way than to be here with him during part of this difficult period for him.  At this point it’s all I can do – just to be here with him to offer whatever support my being here brings him.

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

23 Comments
23 comments
  1. Jules says:

    The two of you are very fortunate to have one another. I can feel the love between you in your posts and supportive people in our lives can make all of the difference. Speaking only for myself- it can make the worst pain bareable knowing that there is someone in my corner. Enjoy your visit RA Mom!

  2. Bob says:

    Mom of RA Guy,
    My name is Bob, I am Rob’s father – he posted a link to a speech he gave about RA on your son’s site and the speech talked about the positives he took from RA and what he’s learned. I had a very hard time in the beginning learning how to deal with and react to Rob when he went through his flares. Rob used to get upset because when he talked to me I would sigh when I would accompany him to the doctor or hear his news. He told me he knew how hard this must be on me as he pictured how he would be if this were one of his sons. He talked with me about his feelings and mentioned how my sighing only upset him more and from me he needed support and love. So that’s what I give him now and I sigh when I am alone. Now that Rob’s disabled we have been blessed to be able to see each other much more. I go to his place and we golf together – well he drives the cart and I drive and pitch the golf balls then he putts if he can. It’s a way for us to spend time together and I appreciate every moment. I read his speech everyday cause it let’s me know that he’s ok, he’s accepted this and he’s ok. Sure there are times when he can hardly move and I take him to the doctor and have to help him on the table that are hard for me, but we’ve worked together and I can better handle this. He looks me in the eye and says “Dad, I’m ok. I can handle this” and he sure can. He’s made me as proud as one father can be! God bless you RA Guy and RA Guy’s mom.

  3. MissDazey says:

    To Ra_Guy’s Mother

    Thank-you for your beautiful written and heart-felt blog. I know that we Mothers would rather be sick ourselves than to see our kids sick.

    I’m very please to have met you via this blog.

    MissDazey

    TO RA_Guy…What a delightful, caring Mom you have. Hug her for me and enjoy your visit.

  4. cateepoo says:

    Dear RA Guy’s Mom,
    Thank you for your beautiful post. As I sat reading your post, the tears came as I remembered when my daughter Sophia was born and six weeks later developed severe eczema all over her body. We tried numerous doctors throughout her infancy and early childhood without much luck. Each night I would hear her scratch in her sleep and I would lay next to her feeling helpless. As a mother, you want to do anything and everything for your child and when it isn’t possible, you feel helpless. But I know just having me near was important for her and I know the same is true for RA Guy. You two have something very special. Enjoy the remainder of your trip knowing you will be leaving a very special part of yourself behind that will remain with RA Guy forever.
    Cathy

  5. Millicent says:

    Dear RA Guy’s Mom, My daughter was diagnosed with RA nearly 2 years ago, & I felt the same as you–I wanted to be able to take away the disease or do ANYTHING that would help her. That’s the way mothers feel. It is evident to me in your writing today & in your son’s blog that you 2 have a very special bond. Just having you there supporting him makes RA Guy stronger, & I’m sure it makes the burden of RA a little lighter. Enjoy this visit & the one to come later when your husband will also be there. Family is so important, & I know that being able to share these times means everything to both of you. RA Guy is an amazing person who has helped lift the load for many RA sufferers and their families. He is indeed special, as are all of the RA Warriors out there. I hope that today will be one of the great days for you & your son! Love, Millicent

  6. Laurie says:

    RA Mom…you indeed have a wonderful son. Thanks for giving birth to him. He is helping so many people with RA on the blog. I am so glad he has his family and partner being so supportive.
    While you are still there, give him a huge, gentle hug from all of us and know that we love him too!

  7. Helen says:

    Now we know where he gets it from!! Thanks to you both for articulating what I so often feel.
    I know you will have a wonderful time with her and take the joy where and when you find it!

  8. Leslie says:

    what a great mother you are! I love the pic of him too…what a cute kiddo he was :) I am 35 and newly diagnosed with RA…I have an 11 year old daughter….I can understand how you must feel seeing your son in pain. It is the hardest thing there is. I am thankful I have a healthy, happy daughter. I hope and pray she doesn’t have RA enter her life one day. I too pray every day…there is tremendous strength in prayer. I also believe everything happens for a reason….it is great what your son is doing here…we are all blessed to read his blog :)

  9. Remicade Dream says:

    RA Guy’s Mom – how wonderful that you posted here! What you have written is so beautiful. You and your son are both very special people. And I love the picture – how cute is he???

  10. Lana says:

    Dear RA Guy’s Mom:

    Thank you for this lovely post. I was diagnosed two years ago with RA and fibromaylgia. I can relate to the motherly worries and questions as I am a mother myself. I often pray, during my own flare ups, for a cure, not for my sake, but for my children’s, so that they never have to feel this pain as I do.

    RA Guy is an inspiration. You did a great job!

    The photo is absolutely adorable!

  11. Rachael says:

    You’re an awesome mom!! I always enjoy reading RA Guy’s blog! It’s very informative and can even be inspiraional at time. He has such a positive outlook and having you in his support system helps!

  12. mur says:

    Howdy RA Guy’s Mom! What a great post. I am fairly new to the disease and all the meds, tools and gizmos (including a new scooter!). RA Guy has helped me tremendously in keeping a positive attitude and he is a wonderful resource of information about this disease. Thanks to you both!
    Warmest Regards,
    mur
    p.s: Loved the pic!!!

  13. RA Mom says:

    Jules – I agree that supportive people in our lives can make all the difference.

    Bob – What a wonderful relationship you have with your son, Rob. It truly is a blessing. Both of you have managed to communicate about his RA and have come out the better for it…although sometimes it is difficult to go through the process of communicating. I empathize with you having a very hard time in the beginning learning how to deal with and react to your son’s flares–with me it was in the case of dealing with my son’s RA…I wasn’t sure what to say or do. It’s great that your son was able to communicate to you what what it was that he needed from you. You’ve reason to be proud as any father can be! Bless you, too, Bob & Rob.

    Miss Dazey – I’ve voiced the same sentiment to my son — that I wish I could switch places with him (although I knew he was going to say that he wouldn’t want me to do that). Thank you for your kind message.

    Cateepoo – Appreciate you sharing about your infant daughter Sophia’s ordeal. As parents it’s an awful to feel helpless regarding doing something for our children. I feel very blessed in having always had a very special relationship with my RA Guy son.

    Millicent – Family IS very important. Although I feel I have a very special relationship all of my five adult children–my other children acknowledge that I have a unique bond with my RA Guy son…it’s been that way since he was a little boy. It was my hope that my coming to visit him with make his burden a little lighter. It wasn’t until he was diagnosed with RA that I did some research into it and found out that it even affected children…that was a shock to me. Yes, all of the RA warriors are SPECIAL individuals.

    Jodi – Thank you for your sweet message.

    Laurie – I feel blessed to have given birth to my RA Guy son–he’s always added so much to my live. I feel proud of this blog he’s developed and of the lives he’s touching through it. I also feel blessed in the person he’s chosen to spend the rest of his life with–he, too, is a very special person. I believe that a Higher Power up above had something to do with bringing the two of them together. My husband and I love him like a son and we’re grateful that our son has him in his life. We are glad that the two of them were able to get married a year ago.

    Helen & Stephanie – Thank you both for your complimentary comments…appreciate them.

    Leslie – Enjoy your daughter–they grow up so fast! Prayer has been what has gotten me through the most difficult times in my life. And, as I stated earlier in my posting–I’m a firm believer that things do happen for a reason. Sometimes those reasons are revealed to us, sometimes not–but I still believe this.

    remicade dream – I’m glad that my son suggested that I write a posting for his blog…the feedback I’ve received has been very personally rewarding. Thank you for your comments.

    Lana – Only a mother can relate to another mother. Like I stated in my posting, I’ve always believed that prayers are very powerful…thus, I will always continue to pray, including for special needs of all individuals. I appreciate your comments. I’ve been told many times that I did a great job in parenting my children…and I give thanks for this to God for guiding me along the way. I’m the first to admit that I made mistakes along the way, but always tried to learn from my errors. Again, “thanks” for your comments.

    Rachael – Thank you for the compliment. I, too, have enjoyed reading my son’s blog and look forward to each day’s postings…I’ve laughed and cried with them. Most importantly, it’s kept me informed on his daily life with RA. I’m especially proud of his positive outlook and how he’s dealing with his struggles. I will always be there for him as a support system in whatever way possible.

    mur – I am glad to read that my son’s blog has been helpful to you in keeping a positive attitude and as a resource of information.

    A NOTE: My son was 4 years old in the picture posted…he was a cutie!–and continues to be!…what can a mother say??!

  14. Rosie says:

    I just finished reading your mom’s post and although I know and I heard how you feel, I started crying and I can’t stop because as a mother myself, I can’t imagine being in her place and it really hit home how devastating this illness can be, how serious it is and how many people struggle without the proper support. Good job RA guy for making people aware of what people like you and your families have to go through.

  15. Teresa says:

    This is awesome. Thank you RA guy for your website. Finding this has started me to look for a different path. My old path doesn’t work.

  16. RA SB says:

    This was one of the most touching posts I have ever read. RA Guy is so lucky to have such a wonderful mother. My mother and I had a tumultous relationship before RA. Since the disease, we have grown all the way apart. I cannot lie, that has made a difficult situation harder. But to see such a wonderful relationship warms my heart.

    Bless you both.
    - RA SB

  17. Terri Lynn says:

    Thanks so very much for sharing your thoughts and feelings with us. RA guy is really special and this site is a great comfort for so many. Enjoy your visit!

  18. Danielle Tipton says:

    Awww! This was such a sweet post!

    Everyone needs to have a person in our lives that loves us unconditionally, who will be there to catch us when we fall. I’m so happy that you two have each other. I know how it is to watch your child in a flare. I know how it is to be so proud of that child- maybe even more proud- than you could be of your other children. He certainly needs your support.

  19. Moselle says:

    Your post warms the soul. Your love for your son is beautiful, and as a mother I can only hope that I will be that supportive for my son throughout his life as you have been for yours. I have suffered from an extremely aggressive case of RA for 6 years now, since getting pregnant. My RA has stolen so much for me, but I am so grateful for what my son has given me in return. I live every day with the fear that I have passed on these destructive genes to my son. I just hope that whatever life throws me I will be able to face it with the strength, love, support and grace you have shown in your journey. Thank you for inspiring me.

  20. Teresa says:

    RA Mom! Had a couple tears reading your post! What a great mother. I would have been on that plane so fast also. I could not imagine my kids having such an illness. Prayer for you, MOM! YOU too are very special!

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