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MS is ruining my future plans

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    MS is ruining my future plans

    I've been diagnosed now for 11 years. I've honestly had it pretty good run. My only chronic issues have been eye damage, neurogenic bladder, severe left leg spacticity. I walk with a cane for balance. Other than that, I can mostly put it on the back burner. As the years go by, I have realized, like many of you, that things aren't going to get better. Last night, while talking with my husband, I realized that I am going to have to give up one of my dreams.

    We adopted our son, from birth, in 2006. In 2008, my son was diagnosed with autism. 3 weeks later, I got my MS diagnosis. We always planned to adopt again, but, with what was going on with me and my son, we decided to wait. Now, my son is 13. My dream has been to adopt an older child. If I could save just one child from spending their childhood in the foster care system, I would be doing something amazing. Last night, my husband finally voiced his concerns regarding mine and my son's needs. He feels that we should abandon that plan since we don't know how my disease will progress. In my heart of hearts, I know he's right. But it makes me sad and angry that MS has taken something else away from me. I kind of feel like I no longer have a goal and a purpose. Nothing to work towards. I didn't want to leave my son without a sibling. Someday, I had hoped for grandkids. Most importantly, I wanted to be there for an older child whose chances of getting adopted are slim to none.

    I am thankful for my beautiful son. He is the best thing that has ever happened to me. I have so many blessings, including an amazing husband. It's just hard to accept that the next stage of my life is, in a sense, already planned out for me. It wouldn't be fair to put more on my husband who already does so much for us. I have to respect is needs and concerns. We were particularly interested in adopting an LBGTQ child. We decided we are going to volunteer and help those kids in another capacity. Thanks for reading. Just felt like venting.

    #2
    Hi kittysmith - thanks for your candid story and opening up to us your concerns. So many of us have been in your shoes or perhaps will be with the progression of MS.

    You have my respect for caring for others beyond your own needs. When I was reading this, the thought of volunteering came to mind - and reading through this, you have thought of that! You have a heart of gold and your son and husband are blessed to have you in their life. So too, you are fortunate to have a husband who has your back.

    I'm sure you will continue to reach for other goals, just differently.
    Be well, super mom
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Thank you, Seasha

      Seasha, your post a few months ago about "speaking your truth" was one of the reasons I had to take a hard look at my future. I really appreciated your candor. As the years progress, I must accept the fact that this isn't going away. It will continue to progress.

      I know we made the right decision to focus our attention on my son's needs. He is a light in a sometimes dark world. He is happy and well adjusted, which is all I ever wanted. My husband is one of the kindest people I know. He's a hospice chaplain. I don't know how he does it every day, but he is able to be present when others often cannot. I'm proud of him.

      Not sure about being a super mom, but I try. Who knows? Maybe we will be presented with an opportunity in the future. I'm excited to volunteer. I can still make a difference. Thank you, again, for your post. It really gave me an honest perspective.

      Comment


        #4
        (((Kittysmith)))
        Don't apologize for venting! This is a great place to do it!

        I can't do any better than what Seasha said. Chin up!
        Tawanda
        ___________________________________________
        Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

        Comment


          #5
          Thanks much for your post, Kittysmith.

          Yeah; MS has taken plans, dreams and goals from many of us. And, I wonder, if for you, this may have been more than just your plans; it might have been a future that you felt "called" to. It's a challenge to reconcile the loss of your ability to respond to it, then.

          I like the way you decided to respond. Instead of giving up your plans, you are looking at altering them by volunteering.

          We all need purpose in our lives; you are continuing to look for purpose.
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
          .

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

          Comment


            #6
            Exactly

            Originally posted by Mamabug View Post
            Thanks much for your post, Kittysmith.

            Yeah; MS has taken plans, dreams and goals from many of us. And, I wonder, if for you, this may have been more than just your plans; it might have been a future that you felt "called" to. It's a challenge to reconcile the loss of your ability to respond to it, then.

            I like the way you decided to respond. Instead of giving up your plans, you are looking at altering them by volunteering.

            We all need purpose in our lives; you are continuing to look for purpose.
            I do feel like it was a "calling". I spent a lot of time with a friend who took care of foster kids. Hearing their stories and seeing how often they were moved from house to house broke my heart. I kind of vowed, to myself, that I was going to save one kid. I feel guilty, in a way, because I didn't give a child a permanent home. Perhaps, volunteering will give me a new sense of purpose. I need to also keep in mind that God has a plan for me, too. If the right child were to come along one day, I'd adopt again in an instant. If it doesn't, I hope to make a difference by just being there for these kids.

            Comment


              #7
              Originally posted by kittysmith View Post
              I do feel like it was a "calling". I spent a lot of time with a friend who took care of foster kids. Hearing their stories and seeing how often they were moved from house to house broke my heart. I kind of vowed, to myself, that I was going to save one kid. I feel guilty, in a way, because I didn't give a child a permanent home. Perhaps, volunteering will give me a new sense of purpose. I need to also keep in mind that God has a plan for me, too. If the right child were to come along one day, I'd adopt again in an instant. If it doesn't, I hope to make a difference by just being there for these kids.
              ((Like))..
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment


                #8
                You and your husband are blessing's
                God Bless Us All

                Comment


                  #9
                  kittysmith - you and your husband have my admiration. Your son is a lucky boy.

                  Healthy or not, it is hard to acknowledge our limitations. Even harder when it impacts our dreams. It shows tremendous strength and honesty to do this, and even more to adapt our dreams to fit a new reality.

                  Lots of luck to you in your volunteering. I hope you find an opportunity that satisfies you.
                  Kathy
                  DX 01/06, currently on Tysabri

                  Comment


                    #10
                    Thanks

                    Originally posted by pennstater View Post
                    kittysmith - you and your husband have my admiration. Your son is a lucky boy.

                    Healthy or not, it is hard to acknowledge our limitations. Even harder when it impacts our dreams. It shows tremendous strength and honesty to do this, and even more to adapt our dreams to fit a new reality.

                    Lots of luck to you in your volunteering. I hope you find an opportunity that satisfies you.

                    I appreciate all of you. I hope I will still feel called to help someone. I secretly hope we will find an older child to adopt. So, there is a little spark still left in my heart. I think volunteering will at least be a start.

                    My son spreads happiness wherever he goes. He's just a really special kid. Always laughing and smiling (except getting ready for school and going to bed. lol). He's easy to love. He is a blessing.

                    Comment


                      #11
                      Here in PA the goal of fostering is usually reconciliation, even in cases where you'd think the parent(s) should be barred from caring for a cactus. This often makes fostering unattractive because people do not want to deal with the inevitable heartbreak. Maybe one of these little people would be perfect for you.

                      Comment


                        #12
                        Update

                        We found a wonderful place to volunteer called The Oasis Center. They have programs to help foster children transition into adulthood. Their demographic is 18-20 year olds. They prevent homelessness by providing an emergency shelter. They help LGBTQ youth. They even help kids get into college. We may never officially "Adopt" another child, but we can certainly be a good influence and help these high risk kids. Who knows, we may find older kids that we can make life long connections with. We can be a family to someone who has no one to count on. Just wanted to share this. I have been inspired and feel that I can still make a difference.

                        Comment


                          #13
                          Originally posted by kittysmith View Post
                          I have been inspired and feel that I can still make a difference.

                          You have made a difference simply by sharing with us.

                          Thank you and may the Lord renew your sense of purpose.

                          Comment


                            #14
                            Originally posted by kittysmith View Post
                            We found a wonderful place to volunteer called The Oasis Center. They have programs to help foster children transition into adulthood. Their demographic is 18-20 year olds. They prevent homelessness by providing an emergency shelter. They help LGBTQ youth. They even help kids get into college. We may never officially "Adopt" another child, but we can certainly be a good influence and help these high risk kids. Who knows, we may find older kids that we can make life long connections with. We can be a family to someone who has no one to count on. Just wanted to share this. I have been inspired and feel that I can still make a difference.
                            Good for you, kitty! That's wonderful.

                            Thanks for sharing your good news with us!
                            PPMS for 26 years (dx 1998)
                            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                            Comment


                              #15
                              Originally posted by kittysmith View Post
                              I have been inspired and feel that I can still make a difference.
                              You certainly have and will continue to do so, kittysmith! Glad to hear the good news.
                              The world needs more people like you
                              1st sx '89 Dx '99 w/RRMS - SP since 2010
                              Administrator Message Boards/Moderator

                              Comment

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