Posts Tagged ‘giving thanks’

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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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Look what I did!  🙂

I am soooo happy…..and Elisa loves her new little dress and hat…..and she was so happy that I could make her a dress. I am really glad that I was able to do this…..so glad, and I am happy that right now, I can do some things I want to do. I am really glad that I have had huge improvement in my hd journey. Hd is not supposed to get better, it is supposed to get worse, right now, mine is getting better, much better…..and so, I am happy.

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yahoo 8

I don’t know how to explain this, and i don’t want to brag when others are having a hard time, but i just cant help it, i feel so thankful. I don\’t know what’s going on, but all i know is i feel NORMAL. To someone that doesn’t have hd, you may or may not know what i mean. But, i have had hd for 5 years now, and i have had good days and bad days, but never ever ever has there been a day where i could just say i actually feel completly NORMAL. Yesterday and today are the first two days in five years that i can say that. I don’t know the reason, and i don\’t care why. Yesterday and today i just did completely NORMAL things, nothing spectacular, but just normal things around my house that i just don’t do any more. Like i did dishes, cleaned the cat littler, cleaned the bathroom, hung a picture on the wall, made some hard boiled eggs because I, not someone else, but i decided to make potato salad, i got all the groceries to do it all too, and i cleaned up my balcony a bit, and dan took me to wallyworld cus i wanted to buy some plants to make a nice herb garden on our balcony, and i did some sewing, and watched tv, and just did some very very NORMAL things, that we all take for granted, until normal just isnt normal any more, and i am just in tears cus you have no idea what it feels like to feel normal, when you have forgotten what normal feels like. I don’t know how long this will last, but it doesnt matter. I am going to be 50 in a few weeks, and i have decided i want to do something really big, something really memorable, not on my birthday, but sometime during my 50th year, i am going to do something that will mean a lot to me, i have an idea what it is i’m planning, and i think it will be really nice. For now, my short term goal is to eat healthy and exercise a bit more too, so maybe i can look good for 50 too, and i will be happy.

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yahoo 21

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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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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Wow, over 1,000 hits today! I am just stunned and amazed, at how many people are reading my blog. I’m really enjoying and having fun doing it, and glad you seem to be enjoying it too. Thanks guys!
An Old Irish Blessing
May the road rise up to meet you.
May the wind always be at your back.
May the sun shine warm upon your face,
and rains fall soft upon your fields.
And until we meet again,
May God hold you in the palm of His hand.
Let’s pray…..Cure HD…..soon
To learn more about HD and the families affected by it, please go to:



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