I am so sorry for not posting earlier, we arrived home last Saturday, but life has been busy with scheduled medications and clinic times, so I have not had any time to write anything, nor have I known what to say. It has been a year this upcoming week that we did a celebration of a negative biopsy. I truly thought then it was over, people came to the Black Swan to celebrate and brought gifts, it was all very merry...little did I know, a year later and we are still in the biggest fight. Her Pneumonia knocked me off my game, I now truly understand how things can go from so normal to so bad so fast. It is official we will never be the friends, people or family you ever knew. I do know, even though we had some bad weeks, we don't have it so bad, life on ward gives me this and I know that life has something else in store for us. I think it will be good, it has to be.
I know you all follow this blog to hear things about Gracie, but if you want to hang up now, I get it, but these are the people that I think about when I say we don't have it so bad and they need to be acknowledged, if not for you for us, Charlotte, the person that was with us from the beginning, I wish I could be more like you, you are triumphant!!! you will always be an inspiration to me and I will make sure that Gracie always knows who you are; Ty, complain as your Mom says you do, you are a fighter, Brynley, what can I say you and Gracie are competing in Tot's and Tiara's Cyclosporin style!! and you do make Superman look like a wimp. Diamond, well you are famous, I just wish you were famous for something else, but I know you will be, I do know you will, it is in your DNA., and the person that had the biggest impact on our lives, Mr. Skalk, you will never be forgotten, I will remember, but the weird thing is so does a two year old. She says your name all the time, I keep telling her you went home. Thank you my friend for easing her fears and being her friend, not many 15 year olds have that kind of maturity to care that much about a two year old girl...thank you from the bottom of my soul...I miss you so very very much. So does your Mom, I try to talk to her once a week to see if she is OK, but I talk too much and am not sure I am helping much...she needs a sign...from you...
To everyone who reads this thank you from the bottom of my heart, it has been nothing but sorrow this year, ever time I turn around it is bad news, but I maintain still that life is good, the Brynley's and Charlotte's teach me this every day, every day is a good day. You make my heart sing, you are the only children my daughter has ever known because of isolation and immune suppression. I love you for that. And we will always rally around you...forever.
Gracie is good, there continues to be "secondary" issues that are happening...she is having a hard time walking and has quit "running", she wants to be carried alot, this we suspect is from a weaking in her bones because of the amount of steroids she has had to be on for the last two years, we will see. If it is OK by Mel, I will now adopt the same mantra...day by day.."
Life continues to be good, we laugh all the time, and are so excited about the awaited addition to our family, Gracie's cousin Ari...., for your Mom's sake, come soon...we can't wait to see you, you will be a welcome greatness in a sea of horrible....we love you already....the best is yet to come....
Stay safe...and thank you on this remembrance day to my Uncle Paul, My Gram pa Bert and all the people who were selfless enough to make this country as great as it is, for if it wasn't for you I probably would not be allowed to even write this blog and it would be probably be written in German, Our Country and our justice system are not perfect but neither are you so when you believe you are then you can hold them to the same standard...choose to be happy and things are not so bad., truly it is a choice...
Love to all
The Sterks...
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