I’m sure we’ve all felt this way in one way or another. You don’t have to have a chronic disease to feel this way. I want to be all that can be for those whom I love around me. Due to one excuse or another I find that I am not.
I just realized, I’m not the big sister I want to be. I may be falling short. I’ve been so wrapped up in what’s going on with me.
You know I rely heavily on my husband, Tommy. If you follow this blog you also know that my parents are more involved in my life than I’d like to admit. But I don’t often talk about my dearly beloved little sister. She’s six or seven years younger depending on the time of year. She’s taller than me and she has an adorable 10 year-old son. Actually, she was taller than me long before I was in a wheelchair. She’s opinionated and feisty. Even family members tend to think she’s the oldest. She always owns the room with her bigger than life personality. I admire that.
I worry that I’m not giving my “little” sister the attention that she deserves. People I trust have rightfully called me selfish in the past. I have to consider that I’ve let my illness cover up the rest of me; including my fragile relationships. My sister and I have the same ups and downs as most siblings; I may just scrutinize ours a bit more.
I have a lot of work to do in living with MS and letting people in at the same time. I know that who I am inside, multiple sclerosis cannot touch… unless I let it. I know that she loves me too, despite MS. As a matter of fact, I’m sure that my disability matters more to me than her.
So, as I sit here anxiously awaiting her short visit from out of state, I cross my fingers and hope that all goes well.
I can’t wait to see her!
I believe we can all find fault in nurturing relationships while struggling with MS. The lack of energy makes it difficult to be the father, mother, sibling, uncle or aunt we WANT to be.
It can be the fight that hurts the most.
Do what you can & give it everything you got…as the rewards are priceless.
Sock, I can do that.
One of the nicest things you can provide to a sister with a child is to be “an aunt.” Aunts and uncles are the “secret weapons” of child-rearing; you can say things that Mom might say, but in a different way and because you said it instead of Mom, they’ll listen. And kids being technologically connected like nobody’s business, you can do quite a bit of good via the web. Wheelchair, neurological nonsense doesn’t matter; listening and sympathizing are gifts that know no disability.
There’s hope yet!
Robert, I agree. I think I look Just as forward To his summer vacación as he do!
Nicole I’m excited for you! ENJOY 🙂
Estizer, I am too! Thanks.
Nicole,
I can definitely relate. (I have 2 younger siblings and one older). Please give your sister a big hug and kiss when she gets there. Pray to have an open heart and to do your best while she is with you. Remember, holding yourself up to past standards may not be realistic for you, since you are dealing with a chronic condition. Just be there with her 100%, and ENJOY!!!!!
Linda Thanks and I Will!
I have two of the greatest sisters. I am the oldest with my middle sister three years young than me and my baby sister, eight years younger than I am. I must admit, I love being the oldest:)
Elaine, That’s neat. I have enough on my hands with One, I can’t imagine TWO more!!!
Nicole, like you my sister is 6 years younger, and taller LOL. we have always been close but when she comes to visit she wants to “fix” everything in my house that is messy. That leads to hard feelings on both sides. But I bless her and found a great Mother’s Day card to send this year.
Roberta, Sisters!
I am the big sister but 14 years… and lost about 7 of them due to a family dispute that I cannot even remember the details of at this time, during that time I also lost the first few years of my niece. Just prior to my ms diagnosis , we reconciled.. and it’s been a difficult road getting our relationship back on track and then comes ms. She has since gotten gone through changes that unfortunately I was not more involved in as I was in the diagnostic stages experiencing the worst of my ms symptoms so far. I want to be there for her and her family ..I lost contact not only with her, but her family as well and it’s hard seeing them and knowing that the activities they are involved in I cannot participate in due to my energy levels… and having no desire to go to the beach and be out in the hot tropical sun. I feel like I have got something back.. but am afraid of losing that again.. our mom passed away 3 years ago and this is in the back of my mind .. being only a few days away… I feel left out.. I just cannot do what they do and have to be complacent with sitting it .. I try to think of what she may be feeling from her point of view.. me the older sister… with ms.. sometimes i just dont know what to think..
Ellajean,
obviously, I know how you feel.Hang in there.
Arletha, I will. I know what it’s like to want to mend a relationship. For me, the key is just leaving the door open and not judging what comes through. Makes sense?
TY ALL …
Nicole, your sister looks just like you! Don’t worry abt what you can or can’t do, should or shouldn’t do. Live for the moment & enjoy her visit.
Kim, You’re right.
I often feel as if I’m depriving my family and friends of me! I know I’m the same person I always was, but what others see first is my disability. I think that may be why I’m always trying to DO so much. I wrongly equate activity with being normal. Maybe I just try to prove to others that it’s still ME inside this declining body.
Peace,
Muff
Muff, I think that’s a common response to this disease process.
I AM A ONE OF THE LUCKY ONE’S. MS DID NOT REALLY IMPACT MY LIFE UNTIL A
2 YRS AGO (A YET STILL I WALK AND TAKE CARE OF ME MOSTLY ).
BUT, I WANT TO DO SO MUCH MORE WITH MY PRECIOUS GRANDAUGHTER. I WANT I RUN AND PLAY WITH HER. SHE IS SO FULL OF LIFE AND LAUGHTER AND
LEARNING. I HAVE AS A SPECIAL ED EDUCATOR GIVEN TO SO MANY … NOW I WANT TO GIVE WHAT I CAN’T TO MINE. I HEAR HOW GOOD I LOOK, ( BUT KNOW ONE UNDERSTANDS THE PAIN INSIDE EVERYDAY, COMBINED WITH CERVICAL SPINE DAMAGE INCURED ON THE JOB HELPING A 4YR OLD DOWN SYNDROME CHILD FROM FALLING… AND LOSSING BALANCE AND TAKING THE FALL AFTER STABALIZING HIM. NO REGRETS,,, JUST NERVE PAIN THAT MINGES WITH THE MS. THAT NO ONE KNOWS WHAT TO DO WITH… SO IF ANYONE KNOW A GOOD TM MEDITATION DVD…PLEASE LET ME KNOW…
Linda, I went through the same thing with my niece and nephew. I’ve learned over time to be creative and do what I’m able to do for them. They see and feel what I do do, not what I don’t. I’m the only one who stress over it!
I know what you mean. I’m not the mom I’d like to be.my 9-year old loves to run, hike, and play rough, and I can’t do those things. Iam lucky to have a husband who is involved with him in those endeavors. And I am realizing that I can be the parent in my son’s life who snuggles, read stories, is quiet, and listens. I am still angry and sad that my ability to be a ‘physical’ mom has been stolen. But I fight to remember what I can still do, and be grateful for it. Not always easy – no, never easy.
Mom with MS, Though I don’t have any children, I can only imagine the void you must feel. It certainly sounds like you are dealing with it. I’m glad you’ve carved out a role you can play.
Hi Nicole,
We sometimes are so engulfed in ourselves because we have a lot going on with ourselves. I was just thinking yesterday that I should not have to go through so much financial struggles because I have enough to deal with my health; with all the pain, fatigue and mobility issues. What makes me think I’m exempt 🙂
One of my sisters stopped talking to me three years ago because of something really silly. I tried to call her to straighten it out but she wouldn’t answer my call. She told my daughter she never wanted to speak to me again. It’s been three years. I love and miss my sister. Hopefully all will change. I have another sister whom I’m very close with and a younger brother. But I wish to have all of my siblings.
Cherish every moment with your sister. It is such a blessing to have her with you.
Take good care!
Arletha, I will. I know what it’s like to want to mend a relationship. For me, the key is just leaving the door open and not judging what comes through. Makes sense?