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Honestly,Sharlene, I almost didn't do the tree. And I didn't decorate the inside of the house until the day before Xmas Eve. But we had everyone coming here and I always feel like there may not be a next year, so I killed myself and did it. I'm glad now that I did do the tree because I look at it and see her picture and her ornaments on it. I know she wanted me to do it because she loved Christmas so much.Quote:
Originally Posted by molly muffin
Happy New Year, Sharlene~
My precious Lena...today is your second anniversary in Heaven. I miss you all the time, Lee. I talk to you in my mind all the time. I tell Sibbie all about you and when I talk to Gabe and say your name, I swear he remembers. I close my eyes and I see you at the front door waiting for me; by the bathroom door while I get ready for work; sleeping next to me; sitting in my lap watching the garden; or sitting on the front step watching the world go by. I miss the way you always watched me and knew when I needed you.
I need you to watch over Josh, Lee. Keep him safe just like when he was little and you and Andee used to lay near him and protect him. You could always make him happy and he needs you now. He still talks about you and isn't afraid that I will start to cry anymore.
You are our girl, our guardian angel, our precious baby, and not a day goes by that you are not thought of. I know you hear me. I know you know how much I miss you. I know you know how much I love you, always...now and forever, my angel child. Mommy loves you, Lee.
Sending huge and loving hugs.
Thank you, Lori~
Oh me too, Joan. I remain forever sorry for your loss of your precious little girl. An angel, indeed — that is your sweetest little Lena. Always.
I hope Josh is not having a serious setback right now. Just like Lori says, tons of healing hugs are coming to you and your family from your K9C family here. Don’t ever forget we are always here for you whenever you may need us.
Josh has been on double steroids since August while they try to wean him off of the liquid one he's been on since he was a toddler. The two together have ironically pushed him into a Cushing's state. He's gained like 30 pounds, has the moon face, the cushing's bump on his back and the huge potbelly. He has high blood pressure and his bones have weakened to the point where just a few weeks ago he had terrible back pain. An MRI showed two stress fractures in his spine and he's now in a back brace and needs a walker to get around. He's out of school for six weeks, hopefully the fractures will heal and the bones will strengthen now that he's completely off of the liquid steroid.
We are beside ourselves with worry, Marianne. He is so bloated that he doesn't even look like our Josh anymore. He was always moving, dancing, climbing...and now he can barely walk.
AND my company is in the process of closing down the office here and expects me to commute to NYC for my job. I can't be that far away and stuck in Penn Station waiting for a train if I have to get home in a hurry.
I am thinking it's time to send my resume out. I need to be close to home, and not at the LIRR's mercy!
Oh gosh, Joan, I’m so sorry for Josh and for all of you who love him so dearly. Indeed, it sounds as though there is plenty to be worried about :-((((((((. I cannot even imagine how hard it must be right now to arise each morning and wonder what’s in store for the day ahead. And all without the comfort of Lena in your arms, calming your heart.
But in some way, it sounds as though it is helping Josh to be able to talk freely about Lena. So her comfort must still remain very much alive to him, and that is such a gift that continues to flow from your angel, your precious heart dog.
Please do keep us updated, OK? I will be thinking of you and Josh especially today, and of course of little Angel Lee.
Oh Joan, I am so sorry to hear Josh has become so ill with this disease we all know so well in our dogs. I pray that Josh, like our babies with Iatrogenic Cushing's, will start to improve very soon with the steroids out of his system and that one day not far away he can once again move, dance, and climb to his heart's content. And I pray some other treatment can be found that will help him if needed in the future. Anniversaries are hard enough to bear without watching a child suffer.
Huge hugs, sweet lady....and wishes for luck in finding the perfect job if indeed you must.
Thank you, Leslie and Marianne. If only we could stop the steroids completely, but that is the only thing that keeps his colitis at bay. If this doesn't work, it will be time for the bone marrow transplant, which is so risky. I think this is the first time it has hit Josh and my daughter how hard CGD can be. He has been lucky this whole time with just having the colitis, even though it really wasn't. No nutrients getting into his system, pooping 10 - 12 times a day. But this is much worse and he seems so sad, confused and afraid.
We haven't had a chance to really talk yet, since his mother wants him home with her, but I think he will open up to me when he gets the chance. He knows he can tell me how he feels and what he's thinking...things he can't discuss with his mother. He's already told me he wants to be cremated. He hopes we won't forget him and that I will mourn for him as I have for Lena. He's only 9 and shouldn't have to worry about those things.
Oh my goodness, no he should not. Nor should his parents and grandparents...
What a burden for a little boy to carry around. Life can be so horribly unfair. What a blessing for him that he can open up to you, Joan, but I suspect some of the things he talks over with you can be pretty darn hard to hear. My heart goes out to you both.
For what it’s worth, a dear friend of mine has been treated for multiple myeloma with a stem cell transplant (I think the only difference is that the cells came from the bloodstream rather than bone marrow?) and she just now passed her fifth year anniversary in complete remission. Prior to that, she had spinal tumors that were producing almost unbearable pain, as well as many other problems. Since her transplant, she has done remarkably well. I know that Josh’s disorder is different and undoubtedly carries its own set of risks. For instance, Josh may need to receive cells from a donor rather than using his own, as my friend was able to do. But I just wanted to offer out a hopeful example. Every day has the potential to bring yet another breakthrough, and to keep hope alive. That’s what my friend tells me when I start to wallow in my own worry over “things.” So today, I wish to pass her hope on to you and Josh. Precious little boy!