Difficult Decisions

Dear Mamacita,

We had a very nice Christmas Eve with Dayton!  He went to such effort to make it a special day for us.  The house was so clean, he had worked so hard, and it was decorated!  He put up a small Christmas tree and decorated it, and also put stockings up for the kids and the kitties!  He really, really tried mom!  I think because he was so thoughtful, so gentle, grateful and happy we were there with him, it made it a day I won't forget.  I was so afraid that it would just be horrible to be there without you, but it wasn't.  As we left that evening I could hear your voice in my head saying "See, I told you everything would be ok!" 

Before we went out to your house we stopped at your grave site and I brought you your favorite Ritz peanut butter chocolate covered cookies.  I tromped through knee high snow, and am so glad that we had that cross put there!  It was still standing perfectly straight and still looked like new.  I rubbed your name and set the cookies on top of the snow for you.  I know the birds will eat them, but I think you'd like to see them visiting you and getting a tasty winter snack.  More likely, the damn squirrels will get them, but that's funny too!  I started crying while I was standing there next to you.  I think just knowing your body is that close to me, but still so far away, pushes the loneliness to the forefront of my mind and heart.  I still can't help thinking how cold you must be.  The need to give you a blanket still hasn't gone away. 

Yesterday was the one year anniversary of your bone marrow transplant.  I will never forget how hopeful we were, and how lucky we were.  I know so many people don't ever get a match, don't ever get even a chance at getting better.  I will never forget what Gerald did mom.  I know a little of the physical hell he went through to give us all this hope.  I remember he said it felt like every bone in his body was in pain.  He never takes an Advil or Tylenol, but he was readily accepting morphine for the pain.  That tells me how bad it really was.  But he never once complained or had second thoughts.  Every time I saw him he had a smile on his face.  I know he'd do it again if given the chance.  I know anyone in our family would have done it.  Just as I would give anything I have to help one of them.  Thank you doesn't seem enough to give Uncle Gerald, mom.  I just hope he doesn't feel like it was all for nothing.  Hope is a precious thing, and his gift reminded me of all the good that is in human hearts, and how much he really does love you and us all.  I pray for God to bless him every day mom.  He deserves it.

I really needed to talk to you yesterday.  I needed someone a little more removed from the situation than me and Dave, and yet someone who still had a vested interest in Sam's well-being.  I don't want to go into too much detail here mom, but we are trying to make a difficult decision for Sam that will make his life much harder now, but may improve his quality of life in the future.  We are feeling guilty for not doing something about it earlier, for letting it go.  But at the time, his other needs were more important, and this seemed secondary.  I don't know mom.  Someone I trust reminded me that I'm not his P.T., I'm not his O.T., I'm not his teacher.  What he needs from me is a mom's love and to get him the resources he needs.  I know this is true but it's still hard to accept.  My heart is breaking for him.  He already feel different than his peers, and if we make this decision he will feel even more different than them.  Please help guide us to the right decision.

I miss you mamacita.  I miss your gentleness, the way you always had the right words to soothe my heart.  I need those words now.  I need to be your little girl for just a little while.. let me be 5 years old and lay my head on your lap and let you stroke my hair and whisper all the things I need to hear from you.  If I close my eyes I can put myself back on your hospital bed, the day of your birthday, when you held me like that as I cried, and you whispered over and over "You'll be ok, baby, you'll be ok.."  I knew it wasn't true then, and it's not true now, but maybe someday it will be.  Just don't let go of my hand mom.  I need you.

Love and Difficult Decisions,
Erika