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Could MS Be a Blessing?

Posted on mscaregiverdonna on July 17, 2011 

First off let me say that I would not wish MS on anyone.  Nor do I believe that God gives people MS either as a blessing or a curse; MS, like all diseases, is a consequence of a fallen world and Adam and Eve’s free choice to disobey God.  That said, I believe God can use the hard times in our lives to strengthen and bless us.

I must admit that I don’t particularly appreciate it when someone tells me that “God doesn’t give us anything we can’t handle.”  Most of the time, I want to respond that His idea of what I can handle and mine are world’s apart, but I have to admit that for the most part, that saying is true.  Or maybe it’s not.  What I have found is that God doesn’t expect me to handle it alone. 

I’m someone who wants to be in total control of my life.  I don’t like the unexpected.  I plan everything.  I do not leave things to the last minute just in case something might come up.  I like to know what’s happening and I want to have closure.  One of the hardest things for me to learn as my caregiving requirements have increased is how to handle not being in control.  I’ve had to learn to trust God.  I’ve had to learn that I cannot do everything myself.  I have to acknowledge that I am not superwoman, and I need help.  It’s through all that I’ve had to learn that I have realized my greatest blessings.

When Lynn and I got married, we both loved the churches we belonged to before marriage, so we decided rather than either of us give up our church home, we would find another one.  We looked around but felt the most at home at Gethsemane Church of Christ in Mechanicsville.  We both liked to sing, and I wanted to act.  Lynn was a very talented tenor, and I was a passable alto, so we joined the choir.  Through that, we became part of the cast annually for a Christmas dinner theater. We also joined the handbell choir, and Lynn became the drummer for the church praise band.  I helped with the start-up of a support group called Discover Freedom (the group was initially started to support people with addictions but was soon found to help people with all types of needs).  I also helped create a drama team and helped both write and present many of the scripts. We were at church 4 out of seven days and loved it.  We made so many friends and received so many blessings from participation. 

Then Lynn started getting weaker.  First, he had to drop out of the choir.  His fatigue was too much to allow him to sing or to stand and perform.  Then he had trouble holding the drum sticks plus his legs got too stiff to drive safely, so he had to drop out of both the worship band and bells.  I continued participating for a while until one day he fell while I was not at home and had to lie on the floor for three hours before I could get back to help him up.  The trauma of that experience and the fact he became very overheated and dehydrated lying next to the heat register caused him to become very weak.  I ended up having to work more from home.  He had to stop going to church and eventually so did I so I could stay home to help him.  We missed the fellowship from church and the opportunity to worship with our church family.  

When we stopped going, it would have been easy for the church to forget us, but they didn’t. We get cards and phone calls all the time.  The entire choir came last Christmas to sing Christmas carols.  The church collected money, and one of the members built a beautiful wheelchair ramp for us.  Between Thanksgiving and Christmas, Lynn was continuously in the hospital.  A group came over to our house and decorated both inside and out so we would come home to Christmas cheer.  While at our house they saw our refrigerator was almost worn out and they brought in a second-hand one that was in much better condition than ours. A few months later, they collected money to put in a handicap shower, and two of the members installed it.  Another group came by in the spring and helped remove several broken down things in our yard. One of the members is cooking our meals, and several are donating money to her to do so.  Someone else is baking us bread every week, and another one is helping Lynn with reviewing the books he is writing.  The blessings of this group are overwhelming!  We are so taken care of and so loved that even though we are not able to do as much as we used to, all we have to do is mention something to someone and the next thing we know, it’s done.

Then there is also the blessings of my job.  My supervisor is a wonderful caring woman who has supported my need to work from home.  She has approved me to have computer equipment set up so that I can work whatever hours I can so I can care for Lynn and still meet the demands of my job.  My team is fantastic as well–doing whatever I need to help me get information and keep up with things at work. My coworkers often offer their support and encouragement, and they’ve been known to send me extra help like getting carpets shampooed and delivering meals.

Our children are always doing things for us and helping us out. Our parents and siblings do the same.  So as you can see, we have had a blessing upon blessing.  Though God hasn’t chosen to remove Lynn’s MS, He has given us so much instead, and when I can’t do things myself, He sends someone along to help me/us out.   

I hope you have a church home.  If not, I encourage you to find a church like ours–one that lives their faith and puts into practice what Jesus taught to love your neighbors as yourself.  God’s blessing can be more than you ever imagined.

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Marriage?

When Lynn and I were dating, I knew that his father had only lived to be in his forties and that he died from complications of MS. Having a medical background, I had a vague, general knowledge of the condition but primarily just enough knowledge to know that it affected mobility and the eyes and I had had a few employees make accommodate requests related to memory.  I knew that genetics was a factor, but not an absolute, in determining if he would also suffer from MS.  I also knew that while Lynn had his vises, he was good about what he ate and he exercised regularly; so, in my opinion, he was more likely to have complications from his smoking than he was from having MS.  I seriously considered all these factors and went into my marriage with full knowledge of what I might encounter.  I actually was very reluctant to get remarried, not due to the MS, but due to the fact that marriage was so difficult and even if you tried your best, you can’t control the other party. When I finally decided to marry Lynn, I went into marriage with a full commitment to staying married for sickness or health, richer or poorer, etc. I had survived one divorce and didn’t want to go through another.  In other words, my fear was not of the MS but of the relationship difficulties itself.
And, I was right to be concerned.  Those first few years were VERY difficult trying to blend two families; taking two very independent and totally different personalities and trying to learn how to compromise and adapt.  We struggled.  We had counseling.  We became distant and we sought and found ways to become closer.  We had to work at it; it did not come naturally to either of us. We were both very afraid of being hurt again and therefore, afraid of totally giving ourselves to the marriage. After all, we both knew how it felt to have loved and lost; but throughout it all, whether or not he might have MS was never a factor.
Then, one day I found him comparing how fast he could wiggle his fingers on one hand as compared to the other.   I could see the difference.  He had seen a physical therapist about occasionally having “drop foot” after exercising.   He had complained of numbness and some weakness in his left leg which was attributed to sciatica.  I asked him during those occurrences if he had mentioned his family history of MS and he said that wasn’t what it was and his doctor had his family history.  I knew then; however, that he had MS.  My daughter, who was in nursing school at the time, and I talked about the fact that we both believed he had MS.  Even his son, suspected it but Lynn was in denial.   I finally got so frustrated that I confronted him about my concerns and demanded that I be allowed to go with him to his next appointment because he would never give me a straight answer about what was discussed.
As it turned out his next appointment was with a cardiologist (he also has mitral valve prolapse).  The doctor asked him how he was doing; then, he asked me.  I told him Lynn’s heart was fine but something was wrong with his nervous system.  Lynn shot me a look of daggers but the cardiologist promptly set us up with a neurosurgeon because at the time, I thought it was possible it could be a disc issue (since he said MS had been ruled out by his doctor already).  The rest is history.  Blood work was done; as was a MRI and a lumbar puncture, and as we were driving home from an anniversary visit to the beach, he got the call that said it was MS.
I already knew in my heart what the diagnosis would be and I think Lynn knew but didn’t want toknow. However, actually hearing it still kicked us in the gut.  I have to be honest that fear of what was ahead did cross my mind. Lynn and I were distant emotionally at that time because he would not share his thoughts or his life with me.  He kept me at a distance.  I think he was afraid I would leave if he got MS.  His parents had divorced while his father had MS and though I don’t think the divorce was due to MS, it probably played a part in it.  However, for us, it had the opposite effect.
I became Lynn’s advocate.  I shielded him from too much information (at his request; he still wanted to deny as much as possible); I did all the communication with the doctors and healthcare facilities.  He finally recognized that he needed me and he let me in and though that process we are closer now than if he had not had MS.  If he had not been diagnosed with MS, who knows if our marriage would have survived?   I like to think it would have because we are both Christians who are totally committed to staying together but I’ve learned you can never say never…about anything.
 
continue reading at: http://multiplesclerosis.net/blog/marriage/

Caregiver or Mom?

Happy Mother's Day
Happy Mother's Day (Photo credit: Wikipedia)

Having just celebrated a great Mother’s Day with my three children and their spouse’s, I couldn’t help but think that although my kids are all now grown, my mothering days are not over. I’m not referring to my status of “once a Mom, always a Mom,” which is certainly true but I’m talking about how being a caregiver is much the same as being a mother.
As a Mom, I did everything I could to keep my kids safe, happy, and well.  As a caregiver, I do the same.  Whenever I’m in the presence of my “child” (Lynn in this case) I watch for signs of danger.  Is he about to run over something with his wheelchair that might topple him over?  Has he allowed his food to sit out too long without being eaten so that I need to throw it out?   I even automatically throw my arm out in front of him when I have to stop quickly!  (He always asks me what I think that will do to protect him since he is bigger than I am but what can I say, it’s an automatic reflex.) I always reach out to protect him from whatever dangers I feel might be lurking around. 
I also protect him from “bullies,” others causing him harm in whatever fashion,  by overseeing his health care, going to bat for him in defending his rights, making sure all his “stuff” is secure and cared for.  I am his “mamma bear” protector in the same way that I was to my children.  When I feel a doctor or other healthcare worker is not paying attention to his needs or missing something that I think is important, I step in. If I think someone is trying to take advantage because of his condition, I’m ready to go to battle.  I am his protector….Just like I did for my kids….
When I was raising my kids, I liked to always see them happy. I do the same for Lynn (and have the same challenges and defeats as I did for my children.)  I try to make sure he has what he wants; that he has entertainment and fun in his life; that he feels comfortable and secure. I try to keep his fears at bay and lighten his load so that he doesn’t worry or become depressed.  I try to keep him “happy.”  Hum, okay, I admit, that’s not always true but it wasn’t always true for taking care of my kids either. There are days that I strike out with my sharp tongue that can be cut like a knife.  I don’t always protect his feelings and I often fight back when I think I’m being taken advantage of but overall, I’m very sensitive to his emotional needs.   I try to help pick up his spirits if sad. I comfort and encourage him when he’s down and discouraged.  I bolster his ego and am his cheerleader.  I’m the proud Mama clapping and shouting for joy when he gets good news about his book promotions or gets a good book review.  I glow with pride when I hear him sing knowing that God gave him that voice to praise him (and praise him, he does).  All these emotions I have for him and give to him; I had and gave to my children as their mother.
Another goal I have is that I strive to keep him well.  Now as a caregiver, I seem to spend most, if not all of my time, in this category.  What I feed him, how I care for his physical needs, where I step in to ensure he has a balanced life; all these actions are done with the goal of keeping him well.  I make sure his food provides the best nutrient balance to fight MS.  I assist with his physical therapy to keep his muscles, respirations, and circulatory system in the best shape possible.  I see that his hygiene is kept up and watch for skin breakdown or discoloration that could indicate a problem.  I try to make sure he rests when he shows signs of being tired and I attempt to keep his life a balance of stress and joy. All this is done for his well-being.  All of this I did for my children and their well-being also.
So being a caregiver is essentially the same job description I had as a mother, EXCEPT as a Mom, I knew I was “growing up” my child to go out on their own.  I was giving them the best start they could have in life and laying a foundation for them to enter their adult life with health, knowledge, abilities, and emotional strength so that they, in turn, could raise their own families and be successful in their own right. 
Not so as a caregiver. 
What I do each day as a caregiver is not to prepare my child for a future to go out on their own but instead to continue in this life at my side and under my care for as long as they live or as long as I am physically and mentally able to do so.  He will not “leave the nest.” If he leaves its for a worse situation; not a better one (except personally, I have a strong belief that heaven is an awesome place and much better than earth could ever be; so in reality, it would be a better place for him; just not the dying part). For us, right now, there is not an end in sight, for which I am fortunate because as a caregiver to someone with an incurable condition, an end means THE END and is not a happy goal to achieve.
So as I reflect on Mother’s Day, I realize, I have my three children, my three children-in-law, my grandchild, and my spouse-child.  I have a house of children and in my opinion there is no better (or harder) job in life than being a Mom. 
Thank you, God for blessing me with my children.

They're Married and Lynn was There for it All

Before every big event, there is always the fear that MS will get in the way of its enjoyment.  I am pleased (and relieved) to say that did not happen during any of the festivities associated with Lynn’s son’s wedding.  For days prior to the event, Lynn would comment on how he hoped his Rebif shot would not make him so miserable that he could not enjoy any of it.  He was determined to be there and I expect he would have been there if it meant going by ambulance but fortunately that was not an issue.
Friday was the rehearsal lunch at our home.  Once again our church came to our rescue and a group came and set up for the meal, while others prepared the food and brought it to our home hot and ready to eat.  It was prepared according to Lynn’s dietary restrictions so he could fully enjoy the meal.  It was delicious.  Following the meal, this group also completely cleaned up and cleared out so that I didn’t have to do anything but take care of Lynn’s needs.  I can’t tell you how grateful I am for them doing that.  I was so freaked out about having to prepare the meal and get everything ready for up to twenty people to arrive at our home.  Knowing Lynn would need a lot of assistance I couldn’t imagine being able to do it all.  In fact, I know it would have been impossible without me having a complete breakdown. I asked two of my friends for suggestions on who might be able to cater and before I knew it, all was arranged.   What friends and what a church family!  Our blessings from them overflow!
After lunch, we were a little late to rehearsal but got there in time to learn what was needed from him.  Lynn was feeling pretty rough by that point so we were a little worried about the next day.  With the help of some Valium to decrease his spasticity and a nice warm shower, I put him to bed for a rest and made sure the remainder of the night he relaxed.

Saturday morning, he woke feeling decent.  He did a limited exercise routine, ate breakfast and laid down to rest till it was time to get ready.  All the groomsmen were western characters so I made sure I had extra time to get him assembled into his outfit. 

As you can see, he looked quite dashing.  We actually made it out the door in plenty of time to get there which was a good thing since Richmond was having a marathon and you literally couldn’t get to the building where the wedding was being held!  Finally by cutting through one of the barricades and taking an alley we got to our destination.  Then into the freight elevator, through the obstacle course, to the ballroom.  He could not join the rest of the groomsmen since the balcony area was not handicap accessible so we hung out in the coat room till they were ready for the men to come into view.  He was Eric’s best man and managed to fulfill his duty of giving Eric the rings without losing them. 
Eric and Erin wrote their own wedding vows and they were priceless.  The promises they made to each other were so “them.” The entire ceremony maybe took ten minutes and it was wonderful.  It was fun, loving, and memorable.  They included the families on both side in all their planning and I couldn’t be prouder of how thoughtful they were to Lynn’s needs.  He was included in everything.  The hotel staff knew about what he would need and made sure he was well taken care of.  Though I was right there to take care of what he needed when he needed it, all I had to do was catch one of the staff’s eyes and they immediately helped me get what I needed. 
The care that Eric and Erin took in planning this wedding was very evident as they considered Lynn’s accessibility, his dietary needs, and his fatigue.  Through their thoughtfulness, he was able to be fully involved and today, the day after, he is not in the midst of extreme fatigue.  He is tired but then so am I.  We are both very grateful that the wedding went so well and Lynn was able to fully be a part of such and every important event.  Lynn adores his son and is so proud of him.  We love our new daughter and we look forward to many years ahead with the two of them. 
Now only one child left to marry off and I wouldn’t be surprised if that one isn’t hitched within the year as well. We look forward to that union as well and feel so fortunate that all three of our children have found partners who love them and are already part of our family.  We are very blessed.

Life Changes

I’m going to be a grandma for the first time in June!  My daughter is having a little boy and I’ve been more than a little excited since the first moment I heard the news (which was about two days after she knew she was pregnant). She and her husband are going to make great parents and I’m fortunate that they are not that far away so I’ll be able to see them fairly often (I hope).
I’ve thought a lot about this new baby entering into our family.  I day-dream about babysitting and playing with him.  I want to go to their home for his birthday parties, attend his school functions…all the things grandparents love to do.  Then there’s this part of me that thinks about the reality of my ability to do that.  I expect I can babysit here just fine but Lynn can’t get into their house so  I couldn’t go to his birthday parties unless they were somewhere accessible or Lynn didn’t go.  I also wonder as I look ahead, when the little guy actually starts school, what shape will Lynn be in by then.  That’s five years away.  Thinking back five years ago, Lynn was still working and totally independent.  What if the next five years has the same decline of the past five? ….I can’t even go there.
So instead, I’m going to think positively.  I know that there will be grandma time.  I also know that Lynn wants some grandpa time so we’re thinking about getting him one of those things you strap on to hold the baby so he can safely cuddle him, too.  Oh, probably he could not tolerate much time actually holding or playing with the baby but we’ll find a way for him to participate. I already have visions of the two of them racing down the hallway in Lynn’s powerchair!
That’s not our only life change coming up.  Lynn’s son is getting married in November!  Our kids are all great at finding ways to include Lynn so he can fully be a part of their lives.  For instance, Lynn had secretly hoped that his son would ask him to be his best man but he was not going to say anything about it to him because he didn’t want to put any pressure on him.  It’s their wedding and we want them to celebrate as they see fit.  But he didn’t need to worry, he’s going to be the best man.  We’ve been laughing about me getting him dressed in a tux and this should be something to see.  Maybe a youtube moment that would go viral?
The wedding is at 2 pm, early enough that hopefully Lynn won’t have gotten worn out by then and late enough for me to make sure he’s had all his essential daily activities completed in plenty of time.  The other factor is the rehearsal dinner…you know the groom’s family does that.  My concern, though not shared with them, was that between the rehearsal and the dinner, Lynn would become so worn out that he would be barely able to function the next day.  Well, they solved that problem for us.  We’re having a rehearsal luncheon instead.  Everyone will come to our house, I’ll fix something we can serve buffet style and that can be fixed in advance and when he gets tired, he can rest.  I’m hoping he can do the lunch thing, ly down for a while and then go to rehearsal, come home and rest for the remainder of the night and be refreshed for the wedding.
So we have major life changes happening in our family.  I’m excited about them all but as is true for anything, it has it challenges.  When a family member has MS, special consideration and long-range planning is needed. You hear the news, get excited, and then at almost the same time, start thinking about what changes will be needed so that the MS won’t get in the way.  The important thing is to make sure it doesn’t stop you or anyone else in the family from participating and enjoying the new events.  It would be easier in some ways to just “sit this one out” but we intend to keep our lives as normal as possible and to participate in whatever we can whenever we can… and so far it’s working.  I hope the same is working for you and yours.

In sickness and in health…till death do us part

Donna and Lynn October 11, 1997

Sometimes I catch people looking at me in sympathy and you can read in their eyes that the path I have chosen is too much of a sacrifice but what they don’t seem to understand is that I did in fact choose this life.  No, I did not go out and look for someone who I knew would someday become disabled.  In fact, I was very reluctant to marry anyone after my first marriage ended. 
When my first husband left, he explained he had never loved me but thought I would make a good mother for his children so he married me…then realized that wasn’t enough.  Therefore, after being burned in that fire, I wasn’t so sure marriage was for me. I wanted companionship and I wanted someone who was a man of faith and had strong family values.  I wanted mutual sharing and participation in our marriage. 
The way I met Lynn was through answering his personal ad in the paper.  I screened him as he screened me for two hours during that first phone call.  I prayed about continuing to see him and it seemed that I had the green light.  We dated for about four years before we got married.  Neither of us were in a hurry because both of us had bad experiences the first go round.  I in-fact prayed often to ask God, “are you sure he’s the one I should be with?”  We actually have very little in common except for our faith and family values.  Was that enough?  God seemed to be saying, “yes.”  Even on my wedding day, I kept wondering, “should I really do this?  We are SO very different, how will we ever make this work?” but I took a leap of faith and moved on.
The first few years were very hard as we tried to blend our families and life styles. Those differences I was afraid of were really hard to adapt to.  We really struggled and both of us wondered during that time if we had made a mistake.  We just could not intertwine our lives it seemed.  We each kept ourselves at a distance; I guess both being afraid it would not work.
My biggest issue with our marriage was that he did not need me.  By nature, I “care” for people.  I do things for them; that’s how I show my love.  I couldn’t really do anything for him.  He didn’t need me and I felt shut out.  Then he got MS and though he was still physically able, he needed me.  He needed my support; my reassurance and my understanding. 
I think he had a fear though, at least initially I think he did, that I would get frustrated and leave.  He often talked about how he didn’t want me to get too isolated or fed up with him because he didn’t want me to leave.  I think he finally understands now that I have no intention of leaving.  God gave me a caregivers’ heart.  I don’t mind being a caregiver.  I like being needed in fact.  I don’t mean that I don’t get frustrated and that I never want to escape; no, I feel like that nearly every day.  What I mean though is that we have a bond that we will not break now.
Lynn needs me.  He needs my companionship.  He needs my help.  He needs my participation in his life.  So now I have what I was looking for when I first got married.  I feel wanted and appreciated and needed.  His illness meets my needs in a way.  I guess that sounds sick to some but I don’t think so.  I think God is very wise.  He knew what I needed and he knew what Lynn was going to need, and he put us together.  He gave us both perseverance and commitment to make it through the tough years so that now we both have what he intended us to have.  We are truly one now.  We are each a part of the other. 
I know many marriages break up when one of the partners becomes disabled.  I can see how it could easily happen.  It’s really hard to be the strong one all the time and to dedicate your life to the comfort of someone else, but when I said, “in sickness and in health…till death we do part,”  I meant every word of it.  I’m in it for the long haul whether that’s this year or twenty years from now, he’s stuck with me because I’m not going anywhere.

Happy Anniversary

Donna and Lynn October 11, 1997

On October 11, 1997, Lynn and I got married.  As I stood at the entrance to the sanctuary, with my ten-year old escort (my son), my soon to be husband, was playing his guitar and singing me a song that he wrote just for our wedding.  The theme of the song was, “you’re my best friend.”  How true that was to become.
As I stood there listening, my son kept saying, “you’re not going to cry, are you mama?”  I didn’t.  I was just amazed at his ability to sing to me when I knew how sentimental he was.  He’s much more sentimental than I am.  I’m a realist.  He’s a softy. 
Thinking back to those days, I thought our greatest challenge would be blending the two families and it was indeed a challenge.  There were times in those early years that I was not sure our marriage would make it…but we were committed.  We had said our vows before God and we intended to keep them….no matter how difficult. 
The first years were strained as two very independent people learned to adjust.  I admit my greatest issue with the marriage was that I didn’t feel that Lynn needed me at all.  He did everything himself, he wasn’t one who shared his thoughts very much, and we didn’t really enjoy many of the same entertainments so we lived fairly separate lives.  Realizing that was a major problem we worked on finding commonalities and sharing our lives more.
Fast forward fourteen years….now we share everything and he’s totally dependent on me and we’re closer than we ever could have imagined.  Yes, we even finish each other’s sentences and we often start to mention something we’ve been considering to find out the other one has been thinking the same thing.  We are truly one now.  So while MS has certainly been a major challenge that neither of us really expected back in 1997, in many ways it was an answer to my prayers.  I had often asked God to make us closer–to make us one.  I’ve learned over the years, God has a strange way of answering prayers and I have to say, this one falls into that category, but God took a dreadful condition, MS, and made it an answer to prayer.  How awesome is that?  Because you see, now, we truly are, “best friends.”