Tuesday, July 1, 2008
Whoa, where did that come from?
Right from the get go. First thing this morning.Out of the blue. Without warning.From left field. Hit me like a ton of bricks ........a mood. A bad one at that.Maybe not so much a mood but rather a state of mind.Temporary but U-G-L-Y while it lasted.The day really shouldn't have started that way as I awoke to Zoey having slept through the entire night ...for the third night in a row. That has not happened since January.Before seizures became part of our lives.We were spoiled up until then because Zoey had always been such an excellent sleeper. So,to have her stretch 3 nights together is, well, wonderful for all involved. Must be the change in beds. Maybe we should have tried that ages ago! Anyway, you would think after sleeping all night this child would be starving. Not Zoey. This child DOES NOT want to eat. No nursing. No food. No nothing. I think that's when it all started.I certainly wasn't frustrated with her. I was frustrated with the situation. I began the hour long process of feeding. Try nursing. Pump. Try food. G-tube feed. That is the routine around here lately. We have attempted bottles, cups,all types of foods. No luck. I can MAYBE get 10 spoon fulls of carrots and oatmeal, only carrots and oatmeal, and that is it. She only nurses really well when she is super tired. That's all. We have used the g-tube more in the last few weeks then in months. Thank goodness for the g-tube or we would probably be heading for one anyway.Looks like an appetite stimulant may be in order after meeting with her pediatrician tomorrow. It becomes a trade off. Topamax=no seizure=no appetite. Things spiraled from there. I began feeling ticked off that she can't just do normal, again, whatever normal is, baby stuff.Like eat.Her g-tube is looking yucky because of all the additional use. I hate that for her,as it can get really,really tender. Another, be it little, but yet another "thing" she shouldn't have to experience. The whole g-tube thing is an issue in and of it's self. We are so lucky we have it for her,it has literally been a life saver, but and there is a but ..... when our pediatrician said in the beginning we would have it probably two years, that seemed like forever. We are basically at 16 months and there for sure is no end in sight now. Where as in January, we only used it for medication. We have taken a few steps back in that department.I got over the g-tube fit and moved right along. Jumped in the shower and started muling over, for some insane reason, all the asinine things people have said to us , mostly me, in the last 16 months. No idea why I started in on this particular tangent but here's a few ...... "She's so cute. Is she retarded or something?", " She looks more Asian then anything", "Do you know how high functioning she will be?", "Do they expect her to live?", "How old are you anyway?", "Aren't you glad she has Down syndrome, there is SO much worse!"The list goes on and on and on. I tortured myself with that for awhile. Moved along to the well meaning people I meet almost daily who ask me how old Zoey is. I tell them. They usually say "REALLY!!!!" She's so small!!!" It always begins innocently enough. Most receive their answer and move along. Others continue asking and asking and asking more things. "Does she walk?Does she stand? Does she crawl?Does she sit? Does she talk? " That would be no on all counts. The talk thing is interesting because I have, on a few occasions,heard this...... Because Zoey only has really one sound, it is a fairly loud, exaggerated "AAAAAHHHHHHH" kind of sound, as recently as last week I had someone say, "Poor thing she sounds so sick" Nope,not sick, just her sound.I have contemplated lying, as has a friend of mine, about her daughter also. I figure if I say 6 months then maybe it will stop it from going any further. Lying however would not do justice to Zoey. She is who she is and she had fought tooth and nail to get where she is.All 15 and some odd pounds of her. She is 16 MONTHS old and I am so proud of this mighty little package.Peoples mouths can just hang open when I tell them. No matter to me.Well, I emerged from the shower and started in on Mark. "Why can't you have a regular job like everyone else?" He asked for the definition of regular. I proceeded to inform him, anything other then one that sees you home on an average, at 8:30pm nightly.That would be regular. Might shock you but I haven't heard from him all day. Went on to get ready, where you could hear me spew things like .... "I have no clothes", "I'm so fat" and "I hate my hair" Do you get the jist of the morning? I followed that with retreating back to my room and slamming my door after previously entering the boys room to find the beds I made first thing, unmade and covers torn off. Any other day, no problem. This morning,whole different deal. I slammed the door so hard that I am now sporting a VERY bruised thumb. Apologies were in order and it wasn't even 11am. My sister included. Sorry Shannon. Didn't mean to answer the door when you so nicely stopped by and I looked at you like you were some solicitor and practically shut the door on your foot. Actually I probably would have been kinder to a stranger then I was to you. I managed to snap out of it fairly quickly but the effects are still lingering. I have spent the majority of the day trying ,to no avail, analyze where it went wrong. Truth of the matter,I came up with nothing.Zero. Zilch. Just a bad morning I suppose. I know it probably circles back to Zoey. Which then starts a cyclical thing of guilt from me.We are so blessed. So blessed beyond words. I would never trade my life with anyone. Not ever. But as I see what Zoey goes through daily. What we go through daily. What she has been through and continues to go through and will go through,well,sometimes ,not often, I get mad. Doesn't last long but I have to work through and past it and then move on. I managed to recoup most of the day. Found lots of moments of joy. The boys rubbing lotion on Zoey after her tub. The boys loving on and playing with Zoey on the floor.The boys giggling endlessly and so proud as they set up their army of all types of their robot "thingys". Zoey just being Zoey. Happy and carefree. Smiling. The day is actually still young. The girls will be home from work soon. Usually their boyfriends come over. We will all eat together. Laugh together. I will remember that even when a day goes not as expected,there are still countless moments that often off set the crummy parts. Today was just one of those days. There will be more but as for this one, I am snapping out of it ,moving on and taking the kids swimming. Thanks for listening to my rants. Can't be fun for you.
* The boys and their army and Zoey in her new tankini from Caitlin!