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Missing Grandpa Harry

July 16, 2010 by Victoria Strong
I'm home from visiting Grandpa Harry. I had a wonderful time being with him and I feel more whole for just spending a few days being next to him. Harry is one of the most influential people in my life. He loves me and dotes on me like any grandparent does, but our bond is so much more. Harry "gets" me and I "get" him. The second I see him, squeeze his hand, give him a big hug, I feel, well, better.

Harry is incredible. One of the first things he said to me when I arrived was, "How are you feeling about leaving Gwendolyn?" And one of the last things he said to me before I left, as I sobbed in his arms, was "I need you to know that no matter where I am, I love you." I do know this. I know he is rare and our bond is rare and I have always valued him. And I know I am so lucky for having him in my life and his influence for as long as I have.

I am so glad I went to see Harry -- I needed this. But, I wouldn't say the trip was relaxing or rejuvenating. It is enormously difficult to confront the end of life. Harry isn't sick, but he is much weaker than he was a year ago. And given his age and SMA, the reality is that I may never see him again -- I know it...and he knows it. And frankly that kills me.

And I find that when I get sad, well, my sad bag is so full that one thing turns into a whole lot of other things and it makes me angry all over again at SMA. Angry that this disease exists... is in my life ...shapes so much of everything about my life and about Gwendolyn's. I hate it. And it makes me start wishing for things that I can't change. And, well, that opens up an entire can of worms. I don't like feeling this way. It doesn't do any good and I wind up just feeling sorry for myself.

Although I felt anxious the entire time, missed Gwendolyn, and worried that something might happen, Bill was really good about texting me pictures and notes to let me know all was okay. It helped to know Gwendolyn was having a lot of fun...and she had a great weekend with Daddy, Gramma, and Aunt Kristen. They went on long walks, went on the carousel, made cupcakes, played games, practiced writing, read lots of books and swung in the swing. She missed me and was very glad when I got home, but she was excited to tell me about all the adventures she had while I was gone. And I brought her a Count doll, which made her very happy.

I'm working on ending this pity party of mine. Being with Gwendolyn and Bill is about the only thing that feels good right now. I know I will kick this, but it's hard to simply will it away. And I miss Harry.

Talk About It

Victoria....there are no words I feel I can offer....simply sending my love, hugs and positivity your way. Wishing you strength and smiles....sending my love and encouragement. Please let me know if you need an ear...I am always available. Stay strong! big hugs.... be well... Lisa smile
Posted by Lisa Prokopetz on 2010-07-16 08:28:19
Victoria, I am so glad you had such a great visit with Harry! I can't even begin to imagine your feelings about all the ways SMA affects your life and everyone in your life...but I am sorry that you, and anyone else, has to live with it's consequences. I so appreciate you letting people know how hard it is, even if we don't totally understand, but especially for those others that do. I know we all see how strong you are, but you are a Mom, who loves her little girl more than anything and the reality of the situation is bound to weigh on you and get to you sometimes. It is nice for others to know that it even happens to the 'strongest' and most incredible of people. You are in my thoughts today as the three of you always are and I know Gwendolyn must have been thrilled to see you walk in the door (and the Count doesn't hurt either!) grin I am still so happy you went, even though it wasn't a really relaxing time, I know your time with Harry is invaluable, for both of you. Love and hugs, Em
Posted by Emma on 2010-07-16 08:30:55
Hi Victoria, I'm so happy you had a chance to see your grandpa. I remember watching the video last year and crying thru it because I could feel the love and excitement you all had for that moment. Not always in a lifetime do we find ones that have a deep and special relationship like you and Harry do. I'm glad he can comfort you and make you feel better by just seeing him. It must make his heart overflow with love to know how important he is to you. I understand how hard it is to leave Gwendolyn and you are so brave. It makes me think I might be able to break away for a weekend. I find my sad/mad bag go hand in hand too. When I get in the dumps my mom reminds me to fill my hurt thoughts with hope and positive thoughts. She says "If you don't have hope then what do you have? Nothing......and nothing doesn't do anything for anyone so its better to have hope than nothing, right?" It helps me to think of the reasons I have hope. Sending you lots of love and hope. xoxo Jen
Posted by Jennifer on 2010-07-16 09:09:01
I am so glad you were able to visit Grandpa Harry; it's obvious that the love you have for him is mutual... at least! Honestly, I think throwing ourselves an occasional pity party helps us regroup and do whatever it takes to handle these assignments. You have done such an amazing, relentless job in so many areas since Miss G was diagnosed, you need some 'down' time. What I found with my own poor-me parties during our Jeffrey assignment was that it was during those times I learned about other families dealing with what I considered significantly more traumatic than our own devastation - more than one baby affected by SMA, twins, first baby... all of which made me shape up and give thanks for what we had (or didn't have). We had a lot to be thankful for, as do you. And you know it and so graciously share it. ALL. THE. TIME. But that doesn't mean you have to love, like, tolerate, or 'dislike' SMA. We all hate the disease. We just love our children MORE... and want to expend our precious supply of energy helping them rather than hating SMA. That said, the fight to end SMA will continue as long as it's necessary.... Helen/'Lucy' (aka Ramblin' Rose...)
Posted by Helen on 2010-07-17 09:33:37
What an incredible bond! The miles can't keep you or him from feeling the love of each other. I am so glad you were able to go and get some special time with Harry. None of us know our timeline here on Earth, I love that you were able to connect and that you have those precious memories. Absolutely love the idea that Gwendolyn got to have some special Daddy time. It sounds like she was very well entertained! Penny
Posted by Penny on 2010-07-18 20:06:24

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