Happy Birthday to Me!

T0day is my birthday.  I’m a grand ole 56 years young or old depending on which joint is aching and how much sleep I have had.  Usually, I do not pay much attention to birthdays.  My children are grown and no one is in the house but me and Lynn and he has no way to buy me a card or gift or anything so it’s just another day.  I get cards and emails and they are all fun and make me feel good but today….today was the best birthday I can ever remember having!!
First off, I went in to work.  Usually I work from home which means I juggle taking care of Lynn and doing my job–often a difficult balance at best and can be very frustrating to split thoughts/functions/ activities continuously throughout the day.  But today, I went into work so for most of the day, I only had one focus…  my job.  It was awesome.  I love having only one thing to focus on even though I had multiple issues to address there, it was one role.  My staff took me to lunch and I was treated to a wonderful fat cheese burger, with the works, and sweet potato fries.  Delicious!  I treated myself to a decadent mocha blended coffee; full of calories, and refreshing for my 15-minute walk from my office to my meeting.  I was outside in the fresh air, able to enjoy peace and quiet; not rushing to get back in the house before I got called to help Lynn in some way or to finish up something that was on a deadline.
I got several text messages with birthday greetings and some beautiful cards.  The cards this year were especially wonderful.  Each one made me feel so humble.  Several spoke to how special I was to the sender and how much they admired and appreciated me. It was so uplifting to have such sweet sentiment shared and to know they meant it. My brother and his family sent me flowers (which is no small thing since I live in the country).  But there was one present I received that words cannot fully express the impact it had on me.  It was truly the best, most awesome gift, I have ever received in my entire life.
It was a card.  Not just any card but a card that was a colleague of pictures of my extended family. My wonderful, thoughtful 81-year old Mom, cut out pictures of each member of my extended family, glued them to a card and introduced me to the family I have not seen since Lynn became unable to travel.Family pictures
I grew up with my Mom’s sisters and their children (my cousins) always around. We were all a very close family.  We all got along together and really, truly enjoyed each other’s company. My Mom had three sisters and from those sisters I had 13 cousins.  Each cousin has had children of their own, most of whom I have never met because I live five hours away and have not been able to go home for most of the family gatherings, even before Lynn was taken ill.  For various reason, I could not get there on the days or times that they were able to gather.  The last time I saw everyone was when my Grandmother died in 2000, thirteen years ago.  Since then Lynn’s condition has made it impossible for me to take him with me back to my family home because their house is not designed for access and Lynn doesn’t tolerate travel very well anyway.  The only travel we do now is once a year to vacation area with our children in a condo that is handicap accessible.
In my heart, I’ve known I would never see my “family” again.  I hear stories and see pictures but it’s groups co-mingled together and difficult for me to tell who’s who.  Well, no more! My Mom (what an angel) assembled a separate page for each family group.  Started at the top of the page with her sister and brother-in-law and then introduced each of their children (my cousins) with their children (my second cousins) in groups and sometimes their grandchildren as well.  I have just met each one and KNOW them. I see the family resemblance and it brings back so much love and longing for them.  I can’t stop crying tears of joy.
As a caregiver, you have to give up a lot.  It comes with the job that you have to make sacrifices that just can’t be helped in order to take care of the needs of your loved one.  I’ve accepted that and just don’t dwell on it.  It makes me sad that I can’t go to family reunions and I often fear the day when one of my precious relatives dies and I want to go pay my last respects, to be with our family in our grief, but know that I cannot do so because I have no way to meet Lynn’s needs nor anyone to stay there with him while I am gone.  I hope that if and when the times comes, I’ll be able to find a way but …who knows?  It’s just a sadness I carry in my heart over the loss of that family I loved so much. I’m not referring to my bothers and their families because they are wonderful about coming here so we can get together at least at Christmas but I’m referring to those childhood playmates that meant so much to me.
I didn’t realize how much I missed them until I got that card.  At first I was grinning so much my face hurt. Then I took it to show Lynn what a special present I had received and the tears started to flow… and then the sobbing… and all the longing for my family I’ve storied in my heart for years just came out.  I am still tearing up as I write this.  I miss them so much and I still love each and every one of them the same as the day I last saw them.
So, I learned today there is more than one way to visit and unexpected joys can come that touch your heart in ways you never expected. I have been so blessed today by so many people and am so humbled by the love that has been shared and given freely.  I am so, so blessed.
Happy birthday to me…

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Accepting What You Grow Up With

When I was young, no one in my immediate family had any type of visible disability.  I grew up in the “country” and all the adults and children were physically active and spent a lot of time in physical labor.  I remember helping my parents build the homes of other family members. By the time I was twelve I had helped lay cinder block, shingle a roof, painted walls, hammered nails, dug in gardens, cleared land, etc.
My story was typical of the experiences of others in our community (we didn’t have neighborhoods per se because most houses had at least a few acres around them so all our neighbors were further away than a stone’s throw).  I knew or was related to almost everyone for miles. There were a few people I knew who had disabilities, but not many. I had a great-uncle with no arms. There was a family that lived next door to my cousins where the parents could not hear but their child could.  I also had a third cousin who was paralyzed from the waist down and who was married to someone who had survived polio and walked with leg braces. Other than that, I can’t say that I was aware of disabilities at a young age.
I remember as a child being very curious about how to talk to Mamie Lee and Tommy who were both deaf when they first moved in beside my aunt and uncle.  My cousins knew some of the sign language they used because they were related to them on their father’s side. I remember trying to learn some of the signs because I thought it was a neat way to talk.  They seemed to understand what we said, but I couldn’t understand them as well.  They were good at pantomime though so it was no big deal to get a message across. I didn’t really consider them disabled; just different. Though they couldn’t hear, as a kid I sort of liked that about them because it put us kids at an advantage–we could be as loud as we wanted when we were at their house and not get yelled at; plus we could sneak into rooms which were off-limits usually (though Mamie Lee was amazing at seeming to know what we were up to anyway).
I also remember being curious about my third-cousin, Glenn.  He was paralyzed due to a car accident.  I would watch in fascination as he would drive his own car and then, by himself, remove his wheelchair from behind his front seat and transfer himself into it.  Though he had no use of his legs, he was very able-bodied.  He was a watch repairman and an awesome banjo picker.  He seemed to get around as well as anyone and seemed happy most of the time. His disability; however, being visible was more obvious and the need for us to help him when he visited was apparent.  For example, when he visited, we either all stayed in the yard to visit or Dad put up planks so he could be rolled into the house.
Then there was Uncle Grover… a truly amazing man.  He was an excellent plumber.  He loved to fish, grow his own garden, drive a stick-shift truck, and knew how to do just about anything.  He also had no arms.  One was lost in a hunting accident and one got catch under a mill-wheel and was ground off.  I never thought of him as disabled either; only amazing to watch how he was able to do things with his stubs. I do admit though sneaking sly glances at his stumps and wondering about them.  He caught me looking once and took the time to show them to me and answer my questions about them.
I’m sure there were others who had physical limitations and some that I knew about but just didn’t see as often so they did not make an impression. I heard about a distant cousin with MS but never saw him.  We had a few relatives with dementia; one with schizophrenia, I believe, based on what I now know about the condition.  My point in this “memory lane” experience is that maybe I don’t remember them as being disabled because we only see someone as disabled when they are not part of our lives.  If we grow up around someone with a disability, then they just have a different “normal.” The need to accommodate them becomes an assumed responsibility and we automatically adapt.  We can talk about their situation, ask questions, and learn how to interact with their physical challenges so that it is no longer a mystery that stands out as being different.
You may be wondering why this was on my mind…
I was watching my grandson yesterday around Lynn.  Eli is at the age where he crawls everywhere and now that he’s out of the hospital, his feeding tube has been accepted by him as just another piece of clothing that sometimes gets in his way.  Other than that, he does not pay attention to it.  On the other hand, he is fascinated by his grandpa’s wheelchair and other mechanical devices.  I can put him down anywhere in this house and he makes a beeline to Lynn’s room to see if he’s on his peddlar or foot massager.  Eli loves both (so does Lynn). He also loves to check out the wheels and “drive” the controls on Lynn’s wheelchair (obviously we cut off the power when he does that or else Lynn would likely drive through a wall).
I wonder if Eli will grow up with a different understanding of disability?  Hopefully, he won’t have his feeding tube for many months so that will not be his point of reference; however, seeing his grandfather unable to care for himself and learning that special consideration is needed for him, will that make him view others in their wheelchairs as “normal” like his granddad? I hope so.  I hope that his exposure to caregiving from being around us will make being around others with disabilities something he just accepts as a different normal.  I hope when he looks back on his childhood, as I did above, he will remember the funny stories of meeting the challenges associated with the disabilities and be amazed at how well the disabled adapt to their worlds.  I also hope that he will be able to help others understand wheelchair etiquette and learn to view the surroundings for obstacles that make participation by the disabled a greater challenge…and assist in removing those obstacles.
I fully believe that God puts people and experiences in our lives to prepare us for situations in the future; sometimes to help others but also sometimes to help us.  Eli will have skills for caregiving and compassion that he would not have if his granddad was not in a wheelchair. Perhaps God is using Lynn to show Eli a way of life that He will ask him to incorporate later into one of His missions for him.  It’s a nice way of viewing Lynn’s disability as having a greater purpose for the good of others.

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The Blessings of Children

Elijah Gregory moments after his birth

May 27 at 3:51 p.m., my daughter gave birth to a beautiful son, Elijah Gregory–Eli for short.  I was fortunate enough to share in the experience with her and her husband and at the moment of Eli’s birth, my daughter weep tears of joy, as did I. 
The decision to have a child was not easy for her.  Though she does not have MS, she has a chronic health condition that has dominated her life (and mine) since she was five years old.  The condition has required multiple medication adjustments, much lost time from school and work, and interfered on more occasions than I can remember, with being able to enjoy plans made.  It made her different from her peers, which created many difficulties for her as a teen.  There have been many tears and many discussions about the quality of her life…but we made it through those times.  Her condition is now controlled on medication that she must take every day for the rest of her life and it still is a factor in all her decisions but she has matured into a beautiful and kind young women, with a deep sense of responsibility, and wisdom beyond her young years.  She is very fortunate in that she also has a very devoted husband who is unbelievably understanding and supportive of her.  Now he has taken over my role as her “rock” and together they face their future.
I share all this as background for her decision to have Eli.  She knew her pregnancy would be difficult and there was a risk that the medications she was on could cause birth defects (thankfully that does not seem to have happened) so she worked with her doctors to prepare her body, her mind, and her spirit to take on the challenge of having a child.  For her that decision was the right one but for some people with chronic health conditions, the prospect of reproducing and sentencing a child to the same possible condition is not something they can do.  Neither decision is wrong; both decisions are right…for those individuals.
As for my daughter, she has a strong faith in God and has learned to rely in Him to help her through the difficulties of this life.  Though she certainly does not want to invite hardship, she also knows that her strength comes from the courage He has given her.  Her life experiences, though very difficult, have prepared her to face what may be ahead since she probably won’t know if Eli has her same condition for several years yet.  However, if he does develop it, who better to help him through it than his mother who can not only empathize but coach him in how to cope with it?  That is true for any person thinking about having a child that might inherit a serious condition.  There are some conditions, that I am sure would cause her (and me, too, if faced with the choice) to decide to adopt.  In fact, she may decide to do that next time.  But it’s okay either way.
My step-son knows that he may very well develop MS as he gets older.  His father and grandfather both had it so his changes are significant. When he asked his girlfriend to marry him, she and I talked about their having children.  They are fully aware of the risk of inheritance and that he may end up as his father but we also know that new medications and treatments are always in development.  BECAUSE of his father, he’s prepared.  He knows what things seem to reduce the risk and what to stay away from; he knows the symptoms and when to seek evaluation; he will know what to do if the time comes that he has to face the prospect.  Plus, like with my daughter, he will know that his father and I are here to help out anyway was can and that God will bless them whatever the decision regarding children may be.
I belive that each challenge we face in our lives prepares us for what lies ahead.  We gain strength, knowledge, and courage with each obstacle we overcome.  Life is hard…no doubt about it.  I truly wish and have prayed often that these burdens be removed from Lynn and from my daughter and that He would protect our other children from them as well. However, I know that we are not alone.  I know that this time on earth for us is like a speck of dust compared to eternity in heaven.  I know that although we have trials and difficulties and get depressed and hurt that I love this life we have.  I feel so blessed to be married to Lynn and to have two wonderful children of my own and an awesome stepson.  I love the partners my children have chosen to share their lives with. I can’t wait to spend time with my grandson and to share with him all we have learned that might be helpful to him on his journey through life.
I am very thankful my parents decided to give me life.  I am very thankful that God blessed my decision to have children.  And now I’m thankful that God has given my daughter the courage to face the unknown and to share her love and commitment to Christ and to her family with a child.
Yes, for me and my family, having children is truly a blessing for which we are thankful.

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Switching Gears

Medicaid eligibility is based on income and asset levels rather than age.

One of the challenges I face as a caregiver is switching gears in mid-thought.  Of course, being a mother certainly helped prepare me for that duty but I always switch reluctantly.  I’m the type of person who likes closure.  I like to start a project, focus on it, get it done.  Not being able to finish something frustrates me considerably.  Needless to say, I’m frustrated a lot.

I work from home as I’ve mentioned many times before.  After I get Lynn and myself ready for the day, I “go to work” at my computer.  I have a job that takes a lot of concentration so when I’m working on a document or trying to advise someone over the phone, it’s difficult when my concentration is broken.  I’ve become pretty good at continuing a conversation on the phone while I insert a catheter, put him to bed, feed him, dress him, etc. but I’m not so good at trying to listen to what he’s saying at the same time I’m trying to listen to a person on the phone.  I know from my training that the human mind can only think one thought at a time so when he’s asking me one thing and the person on the phone is asking something else, one of those thoughts has to be repeated.  It’s usually his but there is always an internal debate on which conversation should I consider first.

Then there’s the frequent, “can you come here for just a minute?” which is never just a minute.  Like last night I was working on a document and he needed me for “just a minute.”  It was 45 minutes later when I got back.  By then I had to totally re-read everything I had just written and get back into the topic.  Of course, 15 or 20 minutes later (sometimes sooner), he’s back with something he forgot he needs…and I start over again.  I do eventually get it done but I admit, I sometimes get pretty short with him.

Tonight I was working on something and he decided to nap. He got up two hours later and was a little miffed that I had let him sleep so long.  I told him I thought he must have needed the sleep since he didn’t wake up.  He countered with, “you just wanted me out of your hair for a while.”  He was right. It’s just so nice not to get interrupted.

I thought when my kids grew up, that interrupting thing would be over for the most part.  I realized recently that I’ll now have the type of life I had raising kids for a very long time to come (if we’re both lucky enough to live a long time.)  It’s not what I expected for our future but that’s okay.  There are still the naps that come fairly often and maybe one day soon he’ll be strong enough that he won’t need me as much.  Somehow, I expect I may miss being needed when that happens…at least some…but I think I could get used to it.

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