Tuesday, May 1, 2012

Too Much WTF






Deep breath....because....because I am going to cry. No, not cry...wail. I keep holding back the tears and keeping the stiff upper lip but all I can do at this moment is weep. I am weary, friends. Weary of so much shit hitting me day after day after day. The latest and greatest just within a 24 hour span;
-scheduled 4 interviews with potential nannies to take over for Aero's current caregiver who leaves on May 11. All four were no show without even a phone call or email.
-Single dad, who owns the house, going through a divorce, sits me down to let me know this shared living situation is not working out for him and I need to find a place to live. Great. I just got rid of all my furniture to live here.
-Caregiver informs me last night that he feels obligated to a friend who is going through hard times to drive her home to Utah. That means his last day is not on May 11, but TWO days from now.
-Aero has been battling a cold for almost 3 weeks. No appetite, losing weight and he is already to small.  Lost all ground on oral feeding and back to strictly g-tube. Started antibiotics for possible sinus/ear infection 3 days ago and not seeming to make a difference. What is wrong? Is his immune system all out whack and why? If you know the genetics of a child with Down syndrome, you understand they have a very compromised immune system. So, please no platitudes about how he will bounce back. I am really worried.
I don't know what to do anymore. I scared, I am confused as to the next step. I can't continue with all this WTF stuff.
Universe, why?

Monday, January 2, 2012

Change is....(gulp) good?




Aero & Auntie Chris

Happy New Year! I hope that 2012 is a sweet, sublime trip for us with our lives intertwining in all sorts of delicious ways. The 1st one will be Aero's 1st birthday on January 15th. I can't believe it! One whole year old...wow!!! It will be a relaxed, casual celebration of good food (thinking potluck) and the traditional ice cream & cake. Only thing is...Aero does not yet eat cake...if he could, what flavor do you think he would request? We will also have a little photo booth to take snaps with the celebrity birthday boy!

On a sad note, it will be our last celebration at 4319 S. Alaska. Yes, the time has come for us to ...well....figure out how to make this all work. I want to provide Aero the very best foundation I can so he can reach his full potential. I know that is NOT putting him in a daycare with his feeding tube and T21 and just hope he gets the attention he needs to thrive (that is the only program that I can get subsidy monies for). I know it IS spending his waking moments with him engaged in meaningful play and devoted care to teaching him to become an oral eater. 

I am reaching out to you for your help. I really need it right now. What would be most helpful to me is for you to just come over and spend time with Aero while I pack up and sell my belongings. It is an arduous task I have before me and honestly, I can't do it without your help. Most days I can barely get myself fed let alone pack up a house and prepare to move.

We would so appreciate the giving of your time, even an hour here and there would help.