Saturday, August 15, 2009

Empty Promises n False Hope

As you ALL know I keep it real here on my blog and in my life so if you offend easily then maybe you shouldn't read further. I'm keeping it real today and reality sucks!
As I sit in Danny's room watching him fight to stay awake on this beautiful sunny weekend, I wait for him to fall asleep so I can go down and get something for lunch. Not wanting to leave him alone when he is awake as how lonely is that. Don't get me wrong Danny is having an ok day and he has great nursing today, but to whom do we have to share this with? After sitting in this room for 7+ weeks your mind goes to places I tend to not like going to. I sit here by myself with lil man day in and day out watching him either suffer or recover, depending on how you look at it. My husband is running around like a chicken with his head cut off trying to maintain normalcy with our business, our daughter, and he's taking on most of the responsibility in the building and moving of our home while I sit here and wait for lil man to get better. I feel terrible I'm not there for him to help out. We didn't plan for any of this to happen, we weren't prepared for a hospital stay let alone a 2 month stay, but we are doing the best that we can. This is not convenient for us! Dan and I are winging it with keeping up on everything that is going on. I just wish I was home so we could help each other out, as we are all the we got....DADL lives strong(Danny, Avrianna, Dan, and Lori). I really believe that DADL is in this together.... at the end of the day we are the only ones there for each other we have the same values, dreams, and goals but right now we are doing it solo. How frustrating, emotional, and stressful. There has been some help in all this so for the ones that have stepped up I am truly indebted to you.
After something like this occurs you definitely see the real person behind the words as..... Actions speak louder then words. 7+ weeks of being stuck in this bubble, multiple procedures, and I can't even fill two hands worth of visitors (I'm not counting Dan's visits) to see my lil man. All the "I'm there for you", the "if you need anything" crap are just words. Too busy to help us move, but yet how many are calling us for help when it's their turn.'s too inconvenient to cuz life is too busy, I understand. My favorite is call me up and tell me where you are going or where you just came from, but you don't have enough time to visit my sick lil boy. Or the "Do you want me to come visit"....I'm a firm believer if you have to ask then don't bother. Cuz you see we are so busy here in this room I don't know if WE'LL the have time.
If it wasn't for the wonderful Internet friends that I chat with everyday and my husband (yes, even when we on each others nerves) I would be in 72 hour lock down, if you haven't noticed this already. This roller coaster ride isn't fun and it's not a vacation. The nurses must think I'm a nut as I'm always on the computer (putzing as Avrianna would say), but this is all I got right now getting me through this.. is a computer. This is my outlet to the outside world and my support group. For that I thank you for being there and letting me be real.
The phone calls of "How's he doing" and "Why are you still there". We've been on this haul for how long and a "normal" hospital won't even take him so, how well do you think he is doing? My son's stomach and gut have stopped working properly he is being fed through his veins, how well do you think he is doing? Danny had to have a tube put in his throat to breath properly, how do you think he is doing? And if you are so concerned on how he is doing then come down and find out for yourself. There is this misconception that once we are home Danny is better, well NO he is still a sick lil boy........I just chose to go above and beyond to care for him at home so I can see my family. Lord knows I can't get anyone here so I can do something with them. Our lives can't totally stop while Danny is getting must go on, it's just alil dysfunctional with everything that is going on right now.
I can't even take Lil Man for a walk down the hallway, or to go outside, and he can't have any of the special visitors anymore (ie dogs, clowns, baseball players, etc.) that come into the hospital because of his colonization of VRE n Psuedemonas (infectious disease). Danny ONLY gets to leave this room when he is having a procedure done. He has been confined to this room for weeks. Danny only has DADL and a few that have come to visit. So isolation is truly the over all feeling of today. We are watching life pass us by in our lil fish bowl of a room. I'm just sad for my lil boy today, my heart aches! I'm just frustrated.
I got this the other day from one of my Facebook friends. Her sister wrote this when she got sick. I really wish I could be able to meet her. Not only does this have meaning for understanding but also for being there and handling illness and loss. Many can say they are their for you or that they understand, but when the time of need comes NOT MANY will be found. Empty Promises and False Hope to ones that are holding onto a string.


Too many people try to comfort
The broken hearted and the ill
With the words, “I understand”
Saying I understand
Means you’ve been there.
Means you’ve walked the road I’m on before.
You shouldn’t say I understand until you really do.
Those words aren’t of comfort if they don’t mean anything.

If your sitting here looking at me
Telling me that you understand
Ill ask you how you made it through
Cause if you’re saying that you understand
It means you’ve been here too

Do you know what its like,
To sit in a room with doctors telling you
You’re lucky to be alive.
Do you know what its like to know you’ll never walk again?
Do you know what its like to wake up and not know where you are?
Or what its like to know you’ll never hear your children cry.

If you don’t know what its like,
Then please don’t say
I understand.
Those words aren’t of comfort if they don’t mean anything.

Do you know what its like to say goodbye
To someone who you love?
Do you know what its like to loose a parent at a young age?
Do you know what its like to loose a child?

If you don’t know what its like,
Then please don’t say
I understand
Those words aren’t of comfort if they don’t mean anything.

So if your sitting here looking at me
Telling me that you understand
Ill ask you how you made it through
Cause if you’re saying that you understand
It means you’ve been here too

Please don’t say I understand unless you really do….

By Kimberly Ann (Girly) ~ an amazing Mom, sister, and person


Anonymous said...

That's a lovely poem and sad but so true.
Lori I have been in your shoes. 2 months inpatient with a medically fragile child. TPN, numerous surgeries and procedures, no end in sight. Didn't even have a cell or a computer. It was far from home and so bleak sitting there day after day.
Wish I had some great words of wisdom for you. All I can tell you is, I did the exact same thing you're doing. One day at a time and sometimes one hour at a time.
My heart breaks for you tonight as I read your blog and although I am thousands of miles away I am there with you in spirit.

Anonymous said...

Hi Kari,
I check in with your blog everyday-I am so sorry that you and Danny have to go through this-I'm here in San Diego but please know my thoughts and prayers are with you and your son.

art said...

I came across your blog from another one I visit. Thanks for being so honest....being in the hospital sucks - sucks the life right out of you and this is even without taking into account why you are there...just walking in the doors do it to you. I hope you all get home soon.