Posts Tagged ‘God’

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We had a wonderful day today…….I just love being a Grandma, and I love my Grandaughter so very very much. She brings me so much joy and love, and I love being able to give her all the love I can. I just feel it is such a priviledge to be a part of her life. But more than that, she feels I am special. She loves to have special conversations with me. She will say, Grandma, let’s have a conversation, and then she always talks to me about things that are on her mind. Asks about God. Asks about me and Grandpa, and why we got married. I say cus we love each other. She will smirk in disbelief, and say, you and grandpa love each other??? lol lol And I will say of course, and we are best friends too. Wow, she says…..lol And she tells me she has a pretty rock collection. And that she has a great big family that loves her soooo much, because she is special. And I say, yes, you are very special honey. She says, of course, cus when i was born, everyone was happy! lol And I say yes, honey. And she says, Grandma, I am so special, you made me a pretty dress Grandma. I love my new dress Grandma, and I say I’m glad honey. Grandma? Yes honey. I am growing up Grandma. Yes honey you are. I love you Grandma…….I love you too sweetheart.

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I never knew either of my Grandma’s very well, and I remember them not being the affectionate type, but I always loved visiting with them when we did visit. But I guess I always wanted more from a Grandma. When I became an adult, I made a conscious choice to get to know both of my Grandma\’s better. It was very difficult as an adult to try and start a relationship that was never really there to begin with, but I did, and I am very glad I did. I discovered the reason they were not affectionate women, was because life had handed them both very difficulty and trying lives to have to live. Their lives were about survival, and they were both full of tons of wisdom. And, I think they both loved me.

When my grandaughter was a baby and young toddler, my hd sympotoms were much worse, and i could not be the person I wanted to be for her, and so I am just glad my hd has improved so much that i am able to be the grandma I always wanted to be. So for now, I am very thankful for this time of wellbeing i am having with my hd, no matter how long or short it lasts, it gives me time to create good memories with Elisa.

But for me, I guess I always wanted to be the type of Grandma that I had wished I had had, and so, for me, I feel so very very fortunate, and so very priviledged, to be able to be that special person for my Grandaughter. It is a dream come true for me, because I have been able to become for my Grandaughter, what I wished for myself…….I think that is very special.

Photo: Elisa wearing a sundress made by Grandma Barb

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Heaven is a better place today, and here on earth it’s a sadder place, because our good friend John is no longer here. John and Linda were inseparable, always always always giving, smiling, and serving others. John and Linda, always in the kitchen, together, cooking up a storm for church lunches…..always giving hugs….always ready to pray….travelling, to Africa and Mexico to help poverty stricken children….standing in the cold snow here in Canada ringing those kettle bells at Christmas time. They raised a beautiful family together too, and were just starting to enjoy the empty nest. John passed away from liver disease today, and his family, friends, and even strangers, will be missing out on one of God’s kindest and warmhearted person i have ever had the privilege to know. John was special, he loved God, he loved his family, he loved his friends, and he loved strangers too. They say heaven is a beautiful place, but i think that today, heaven is even more beautiful, because John is there. And here on earth, is beautiful too, because John has been here. John will be missed very much by his wife and family. John was very very special.

There is a special song called Friend of God. I want to dedicate this song to John, because John was a friend of God, and i know he would like this song so much.

Bless the Lord, O my soul: and all that is within me, bless His holy name.
Psalm 103:1

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My friend Eric is caregiver to his wife Teresa, and he is raising their two boys. I think being a true caregiver is not a job description so much as an attitude of the heart. I have learned so much from him, about life and friendship, and about the true heart of a caregiver:

Sometimes I do my best blogging on the HDAC, and then I send it over to my blog, and that is what I am going to do with this one. A couple of weeks ago, I wrote about my good friend Gordon, his daughter Kirsty, and his son Michael. I have more friends that I want to share about too. I want to thank all of you for making this place such a great place to be. You all mean so much to me, but there is one person in particular that I want to thank tonight, for being such a good friend to me when I needed one. Yeah I know, he’s not going to like being in the spotlight, but you know what, I want to anyways…smile. Here is a short article about loneliness, then I will talk:

Reader’s Digest article on loneliness and our health:

“According to recent study by Reader’s Digest, lonely people seem more likely to die of heart disease than do the socially active. The study allowed for medical and life-style risk factors-age, smoking, physical inactivity, and signs of heart disease-and found that the subjects with few social contacts had a 40 percent greater risk of dying from cardovascular disease than the rest did.”Loneliness ” said Newsweek Magazine in reporting a similar study, ” can speed your demise no matter how conscientiously you care for your body.” One study of elderly heart-attack patients found that those with two or more close associates enjoyed twice the one-year survival rate of those who were completely alone. “We go through life surrounded protective convoys of others,” says Robert Kahn, a University of Michigan psychologist who studied the health effects of companionship. “People who mangage to maintain a network of social support do best”.

My old world was gone, and this new world of HD was lonely and frightening:

Huntington’s Disease has turned my world upside down. I was diagnosed three years ago as being in the very early stages, memory,cognitive, and some emotional issues. I had been very active in my church, and had a huge social network of friends, but over the last five years that has disintegrated, as I became more socially withdrawn, having trouble making phonecalls, could no longer drive, could no longer focus on conversations that lasted more than a couple mins, and the list goes on. Suddenly HD was putting me into a whole new world, where none of my old friends were. I was so alone. No phone calls, no friends, and I was in grief. I was losing the old me, I was angry and I was terrified, and I was alone, and I had a lot of questions. Coming to the HDlighthouse and the HDAC has been the best thing that has ever happened to me. Caring people, a wealth of information, and knowing that you’re not alone in this. But more than that, I’ve met people that I never would have met, in my old world.

Tired and angry, and needing a friend:

But, a year ago, one person in particular, Eric, became a good friend to me. I was terrified, and I was angry, at HD, for taking away my life, my personality, my friends, but more than that, I was tired of being angry. You can only be in grief and angry for so long, before you even get tired of that. Anger is tiring, and draining. So I wanted to know if there were any good things, any benefits to having HD, so I could let go of this anger. So I started an HD pros and cons thread, and asked people to give me the pros and cons of HD. Well, everyone gave very true and emotional answers, and they gave pros and cons. But the best answer for me, came from Eric. This is what he said:

This is Eric’s story, from May/06, the heart of a caregiver:

“People succumb to HD. Given that downside I have more than a few positive things that have happened through the course of dealing with HD. HD has allowed me to know true compassion. I saw my wife exercise it with her mother. I was able to learn it from her and and eventually show it to her when she needed it. My children have learned it also. I have watched as Teresa has exercised grace in her illness. We as a family have become closer, not the ships passing in the night like so many families become, and that we might have become also. I feel God has bestowed upon us a true purpose in our lives. Teresa has become the tool for three better people. The boys and I have a purpose in caring for someone in her greatest need. I have learned humility as have the boys. We have seen people from doctors and nurses, to teachers, to the people of our town and people in our church offer what they could when they could. We learned what matters in life and what doesn’t. Small moments in time have become larger and more enjoyable. We have all learned to ask for help when we need it. We learned to accept it from those who benefit from giving it. I also have seen a true humanitarian effort on the part of this community. I have seen so many people give beyond what any normal person would give. We have all seen thoughtful well wishes..true compassion..a sharing of ideas, thoughts, feelings, and experiences, all for the benefit of someone else who needs it. I think picking out what sucks is pretty easy. Bad things have happened for sure. But for me at least, bad things happening hasn’t meant a bad life. I get to hear “I love you”, from the boys and my wife more than I ever would have. I get to say it back and mean it more too. Barb…in your tally you may not want to count all that stuff. I skewed it. But you have to count this on the pro side…I can count you as a friend thanks to HD.”


I guess I’ve never really questioned why me, like why was I chosen, what did I do to deserve this, maybe. For me, my question has been why anyone, why this disease. I guess maybe a good question might also be, why not me. I think in life things just happen, and we don’t really know why. I know for me, I don’t really feel like God did this to me and others…I know it’s very valid for some to wonder that….I also don’t think some great enemy out there did this personally to me. I think sometimes in life, things just happen….I was feeling angry, and the only person I knew how to be angry at was God, and God allowed me to do that, because He knew I needed to be angry, for a time. But I was tired of the anger now, and wanted some hope. Eric’s post really touched my heart, and gave me that hope. He did not speak of tragedy, he spoke of HD as being the opportunity in their lives to show compassion. I was so jealous, I was so jealous that he could feel that way, and I wanted that too. I wanted it so bad that I decided to accept that HD had been brought into my life, to not be angry any more, and to trust God again. Eric helped give me back my hope, and that is something that thank you does not even cover.

Taking away my fear:

Eric continues to be a true friend to me, and to so many others here on the forum as well. Recently, when Gordon’s son Michael passed away, it was a very very tragic time for many of us. Eric did what Eric always does. Checking up on people, making sure everyone was OK, just doing what he knows how to do, just being a friend, to anyone that needs one. And when Norma and Scott both passed the following week, it was too much for me, and I’m sure many others. But Eric continued doing what Eric does, being a friend. And when it was all suddenly too much for me, and I broke down crying, and told Eric I was terrified, because Scott was in a lot of torment his last few months, and I was terrified, not of dying from HD someday,
but that I might be trapped in torment, Eric did what Eric does best. Convinced me that that won’t happen to me, and convinced me I was living in a tomorrow that is not going to happen to me, that I need to live in today. How did he convince me of that? I dont’t know. I guess because he is Eric, and he is my friend.

Being a friend:

I once asked Eric, how do you do so much for so many people? I said, aren’t you scared of burning out? He said, well first, I dont do much. People are lonely and scared, and they just want someone to talk to. He said I’m awake 18 hours a day, there is a lot you can do for others in 18 hours, and he said, it doesn’t take much, a simple email, let them know someone cares. I don’t do anything special, it is easy. And he says, I will not burn out, because I only do in a day what I can do. Nothing more and nothing less. It’s easy to be a friend he says. He says I am only paying back friendship that was given to me when I needed a friend. Thank you for being my friend Eric, and for teaching me how to be a friend too. You’re the best Eric!

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Ok, so, I’m stepping out tonight, out of the closet, only momentarily lol. Anyways, here is a posting I did on the HDAC forum tonight, and I thought, hmmm, I will post it here too, because it is a good thing…….smile……so here it is:“Well here goes. I’m very uneasy talking about my meds on the forum, even though i talk about them in the chat. But i think i will this time. I have been on a memantine trial for 3 months now, and am doing really well on it. I don’t feel as confused and slow, feel more alert. I noticed the dif immediately. I’ve been told to stay at 10mg because 20mg has shown to have more side effects. I made my grandaughter a quilt this Christmas. I have not been able to sew for three years. One of my daughters told me last week, that she sees quite an improvement in me lately. And we ran into some friends today, that we have not seen for six months, and they were like, Barb, you look fantastic, what’s going on they said. They said you are not slow and confused looking, and you are responding quickly in the conversation. So, i have not had every area improve, i personally feel i have had maybe a 75% improvement. I feel this improvement is not in every area, but in three or four select areas. And so, i am happy about this, this is a good thing. If i get more improvement, great, and if not, the improvement i have already had i am very happy with. Does my husband notice an improvement, no. That’s only cus he doesn’t notice anything lol. I’m thankful to Marsha for telling me about memantine. It actually stops brain cells from dying. My Dr says current research is showing it will give me an extra 5 to 10 years he feels for sure”

Grandma…….le’s have a conversation
Grandma…….let’s have a conversation…….OK sweetheart, what would you like to talk about?…….Well Grandma, when I am a grown up, I am going to have my own home. It will be very beautiful Grandma. And I will have pretty pictures on my walls, and I will have twins Grandma, and they will be twin girls, and I will have lovely hardwood floors, and Mommy will come and visit me in my pretty home, when I am a grown up…….That sounds wonderful sweetheart…….Yes Grandma, I am going to be four years old soon Grandma, I am growing up very fast…….Yes you are sweetheart…….Grandma?…….Yes sweetheart…….Jesus loves us, and Jesus just loves everyone Grandma, that’s because Jesus is in our hearts Grandma …….You have a lovely heart Grandma…….Well thank you sweetheart, you have a lovely heart too…….Well of course Grandma, that’s because Jesus loves us Grandma, and I am almost a grown up. I’m almost four years old Grandma…….Grandma?…….Yes sweetheart…….When I am a grown up, will you come and visit me in my lovely home Grandma, and come and have a tea party with me Grandma?…….Well of course sweetheart
x o x o x


                           Praise God from whom all blessings flow;
                              Praise him, all creatures here below;
                                           Praise him above, ye heavenly host:
                                           Praise Father, Son, and Holy Ghost.



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From Lamentations 3:23
Great is thy faithfulness!
Great is thy faithfulness!
Morning by morning new mercies I see;
All I have needed thy hand hath provided
Great is thy faithfulness, Lord, unto me.

I tested positive for Huntington’s Disease in Jan of 2004. One of the things I have found the hardest to deal with, is the changes in my personality. I used to always have a song in my head, but that is one area of my personality that has just kind of disappeared, and when I do find myself singing, it is a very rare event now, and catches my be surprise…..so you can imagine my surprise today, when out of the blue, I found myself singing, and I slowly realized I was singing one of my favourite hymns, Great is Thy Faithfulness. And I realized, yes, what a beautiful beautiful song.

My old world…..I loved my life, and loved who I was. I always imagined that no matter what tragedy came my way in life, so long as I stayed strong in my faith, I would survive. But what happens when your memory fails you, even your memory of who God is? My mind was no longer my strength, but my weakness. I no longer had the same passions, church was no longer a joy, but a struggle, I could not focus and even remember sermons……keeping up friendships started becoming really difficult, as I found my old world disappearing, and finding myself in a whole new world. I was grieving a loss, the loss of me, my hopes, my dreams, and my personality. But, I finally began to realize, that even if my memory fails me, that God’s memory will not fail Him, and that I can trust Him to remember how much I love Him, even if I forget. I no longer had to fight to be strong, but could accept this new me.

I have been told that I have been very courageous in this past year, and that I have met some tough challenges. I’ve also been told that I probably will not believe that I have been courageous, and that is very true lol. But if my friends say so, then I believe it.

What I do know is I am no longer scared and angry, but finally in a place of acceptance of HD in my life, and this brings me great peace. I want to give thanks for special friends in my life, who have helped me this past year. Some have shown me what real grace is in the face of tragedy, others have helped me not to be scared of this new world I’m in, and others have offered true inspiration. I hope to introduce some of these people to you over the next while, because, well, just because….. 🙂

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Some day I will make a quilt like this one. This morning in church, was just the best, because of all songs that we sang, this one I remember most:

O Holy Night
Oh holy night! The stars are brightly shining,
It is the night of the dear Savior\’s birth.
Long lay the world in sin and error pining,
Till He appear\’d and the soul felt its worth.
A thrill of hope the weary world rejoices,
For yonder breaks a new and glorious morn.
Fall on your knees! Oh, hear the angel voices!
Oh night divine, Oh night when Christ was born;
Oh night divine, Oh night Divine.
Led by the light of Faith serenely beaming,
With glowing hearts by His cradle we stand.
So led by light of a star sweetly gleaming,
Here come the wise men from Orient land.
The King of Kings lay thus in lowly manger;
In all our trials born to be our friend.
He knows our need, to our weakness is no stranger,
Behold your King! Before Him lowly bend!
Behold your King, Behold your King.
Truly He taught us to love one another;
His law is love and His gospel is peace.
Chains shall He break for the slave is our brother;
And in His name all oppression shall cease.
Sweet hymns of joy in grateful chorus raise we,
Let all within us praise His holy name.
Christ is the Lord! O praise His Name forever,
His power and glory evermore proclaim.
His power and glory evermore proclaim.

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Today is Thanksgiving Sunday, and I’d like to share a story that I actually wrote a couple weeks ago, and posted on the HDAC ( http://www.hdac.org ), but I just really wanted to share this again for Thanksgiving, because, sometimes when life is hard, we forget to be thankful for the simple things in life, and sometimes a child’s view is priceless:
Through the eyes of a 3 year oldwhy we can’t see God
We’re driving down the road one day, Grandma, Grandpa, Mommy and Elisa. Beautiful sunny day, and Elisa is unusually quiet. Suddenly she says,” Grandma, Grandpa, Mommy? I can’t see God.” So I say to her, but you can see all the beautiful things God has made, the trees and flowers, everything.” “Yes Grandma, but I want so much to see Jesus, but I just can’t see Him, I just can’t see Him, because I have Jesus in my heart, and if I want to see Jesus, I would have to take him out of my heart so I can see Him, and I don’t want to take him out of my heart Grandma, so I just can’t see Him, because I love Him. That’s why we can’t see Jesus Grandma”. And then this little voice in the back seat starts singing Jesus loves me, and she starts shouting, “come on everyone, sing! come on Grandpa, come on grandma, come on mommy, sing everyone!”

From the heart and mind of a 3 year old. Wouldn’t life be so simple, if we could just think like a 3 year old. A quiet car ride turned into an extraordinarily beautiful day.

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