Saturday, February 21, 2009

Where have I been

Yes you guessed it, we spent yet another visit at Hotel Riley. Lillian was admitted this time for diarrhea and stomach flu. She was having 10-15 dirty diapers for several days. I had taken her to the ER up there the night before only to be waiting in the hallway outside the waiting room bc there was no room. Needless to say, I chose not to keep her and all my other kids there to catch all the junk floating around. ANYWAY, she finally looks like her old self to me. This was a slightly more tolerable stay, but it was only tuesday through friday. I still believe the docs have horrible communication issues...but hey that's me.

I've come to realize that this is actually the worst (is that a word) and best time in my entire life. I think I must somehow live in denial about the set of circumstances I've been given. I think maybe it's a coping skill. It's a lonely place to be. I used to find myself in a somewhat different category due to the fact that I chose to have a large family. I KNOW I'm in a COMPLETELY foriegn land called special needs it just doesn't always occur to me until I'm sitting in a hospital letting the student nurse change my daughter's trach so she can gain that skill. What the heck??? Does it also seem that you tire of hearing people whine about their "normal" mundane issues? I try not to be to cynical, but most of the time I'd take mundane any old day. Overall, I think I do pretty well but oh could I become bitter if I let myself go there. For example, missing your friends that for some reason have no time for you or being annoyed that absolutely noone makes an effort to visit you in the hospital. Trying to understand it is difficult so I just try to excuse or accept it and keeping moving forward. Anyone feel my pain? Holla back.

8 comments:

Jessica mommy to Alex/ RTS said...

Even though Alex and I havent been in the hospital for a while....I feel your pain. We had no visitors in the 7 weeks we were in and out of the hospital. Well our pastor came, but i called and asked him to come, so does that count????
It is very lonely, and somedays I get bitter, but I try not to stay there. Its lonely, and it isnt fair, and thats just the bottom line.
Thinking of you always.

Mandy said...

It's just not right to have no visitors! When Grady was in the hospital we had some come but many who I thought would come did not (mainly, I think, because he was so critical and we didn't want the germs around him but they still could have come to see me!)
Ugh, I can totally picture that hallway you're talking about! No room in the waiting room is bad news! We were *lucky* (if you can call it that) that all the times we've had to go to Riley's ER has been by ambulance or he's been bad enough that they take him right back.
When I go there now I just picture all of the germs floating around and on every single surface!! We go back this Wed. the 25th and I'm praying Grady doesn't pick something up. It's a necessary appt. but I'd rather not have to do it.
Glad Lillian is doing better. I think about you often, mostly because we have that Riley connection. Are you far from Riley? Fortunately we're only 20-30 minutes.
I hate that people have to deal with special needs and that so many of them are doing it alone with no help and no breaks. We had only a very small peek into your world with Grady's experience/health and it can be so very overwhelming and lonely. Like, after he was home and doing better, people sort of assume all is ok. Now, if I ask for prayer for him, even though he isn't critically ill now, I feel like they don't take me seriously. Come on! Last year in Jan-March he was near death on more than one occasion! Doesn't that qualify me to ask for prayers for my kid when he has some issues now?
Sorry, this is way too long. Just HUGS to you. I hope you're able to get some rest and relaxation. Personal question, do you take any meds? After Grady was born I had my gallbladder removed in emergency surgery and shortly after during my recovery days I realized that I was depressed so the OBGYN at St. Francis prescribed Lexapro and it was a huge help. I know I wouldn't have gotten through all of Grady's hospitalizations without those meds!
HUGS HUGS HUGS!!!!!
Thinking of you!

Marissa said...

Oh yes, it is SOOO difficult to hear of other's mundane, petty, "normal" problems!! It makes me want to scream at them "listen to me, you have it EASY!!! Look at what I do in a day!!!" It is so hard to not become bitter and hardened against what our friends with "normal" kids deal with compared to what we deal with. It is sooooo hard not to be cynical. But, ultimately, we can't hold it against them that they have "normal" kids. How would we react if the shoe were on the other foot.

All this to say, I feel for you friend. Please know that, if I were anywhere close to you, I would be visiting you, even "holding down the fort" while you stepped out and took some time to breathe. You have been doing a great job dealing with the last two months that have been downright $#!&&%. Praying, as always.

Love ya,

Alicia

The VW's said...

I recently found you on another site and came to visit! I can TOTALLY feel your pain sister! I've felt very similiar feelings about what you just posted about.

Your life totally changes when you have a child with special needs. (Your personal life, your free time, your needs....) No one gets it except those who are walking in similiar shoes. I wouldn't change having my son Gavin for anything, but some days are definitely harder than others!

Just know that you are not alone and that I'll be thinking of you and your sweet girl!

Hugs from MI,
Alicia

Vickie said...

I am sorry. That is sad that no one came to visit.

When I catch myself complaining about my kids, I have to remind myself that I am blessed.

Take care, still in my prayers.

p.s. The VW's are from MI. Gotta check them out!

Finding Normal said...

You know I feel the same way. We didn't get visitors during our 5 month hospital stay. No one except family. Part of that is probably because I didn't ask for anyone. And I probably wouldn't have been too open to it either since I was in crisis. I did appreciate the phone calls and the few that brought dinner to Noah and I. But even those visits were short and not sweet because I was hanging on by a thread. I had no one who would just sit with me and listen to me and cry with me. Which is what we need most, I think.
And you're right...the mundane issues of other people's lives is annoying. But then I try to tell myself that I would be the same way if I weren't on this journey and try not to hold it against them. They just can't get it.
And it is the best and the worst. Our kids will never be these ages again. We have to treasure every day and every funny thing the older ones say and the cuteness of the littles. And pray that someday it won't be quite this hard.
Now, for the BIG question...think you can stay home thru Thursday? I'd like to come over and bring you a candy bar and sit and cry with you, and Thursday is the earliest I can get there, what with 15 million therapies that "normal" people don't even consider. :)

Marissa said...

Hey friend,

Just wanted to answer those questions you asked me in your comment.

First, Marissa is all toddler and refuses to wear her HME about 75% of the time. She never really got a bad cough with this last bout. When she wouldn't wear her HME, I would just drop the tiniest bit of saline down periodically so she wouldn't dry out. She only wears an HME when she is sick and can't wear her PMV. I have never been able to figure out a good way to keep those things on her when she is asserting her independence! Weird thing is, she'll leave her PMV alone most of the time and it is harder to breathe through than the HME!

As far as the shampoo, to be honest, I haven't even tried to go look for it. That is not to say that I have forgotten about it, but just haven't had the time yet. I will try to look at Sally's soon, we have one just down the street from us. Thanks for the tip.

Hope all is well with you,

Alicia

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-Wenda