Reality

OK, so this is going to be a depressing post, but something I feel I need to write.  Sometimes things pass by and I get over them but this seems to be weighing on me a lot and I felt the overwhelming need to write about it.  Today I was holding Lauren as I do most days just staring at her beautiful little hands and dreaming what it would be like to hold her hand while we walked to the park, or as she walked into Kindergarten, or grabbed my hand and told me to come with her.  These are things I will never experience with her, she can't hold my hand or even reach for my hand, she can't hold anything purposefully.  There are a lot of things I will never do with Lauren that make me sad every minute of every day.  Things no one understands but me.  I become even more aware when I have days like Friday when it was just me, Taylor, and Skylor.  Me and my two "normal" girls, Friday was easy.  We went to a neighbor boys birthday party and Taylor played all the games and Skylor chased after all the big kids and explored every inch of a new yard and I just enjoyed being a "normal" Mom.  I felt lucky that day that my other two girls were in school (the nice thing about them being housed on another school districts campus).  If they were with me, I probably would have had to send Taylor to the party by herself because it is too much to handle.  Alison has to watched all the time since her balance is so bad and she bumps into things and falls down, Lauren's wheelchair wouldn't have fit through to the backyard and Skylor would be running everywhere.  Just not doable in my world with all four.  So I enjoyed the day just the three of us.

I stopped to think about my (our) life and how we are stuck so to speak.  We can't move out of our area or state because of Lauren and Alison.  I cannot imagine having to find all new doctors, therapists, schools.  If we moved out of state we would never receive the benefits through the state that we receive now.  But the reality is if we stay here we will never be able to afford to buy a home, that means that we can never make a house wheelchair accessible, make the changes needed to accommodate her needs as she grows and gets bigger.  Then there is Alison, sometimes I think of her as normal, I mean compared to Lauren she really is, compared to Taylor and Skylor she really isn't, not at all.  She can walk, she can't talk that well, but she is getting more understandable every day, at least to us.  She can't eat very well and relies mostly on medical formula three times a day and she is still super tiny.  There are so many things she can't do compared to a "normal" almost 6 year old (which her Kindergarten teacher likes to point out, DUH!!).  Most likely she will go to regular elementary school next year and I am scared for her, probably mostly for myself.  When I go to her class (special class) now, she is probably the most "normal" child there.  All the parents there "get it".  Next year she will be the girl that stands out in her class, I hope because she is the cutest and sweetest but none of those parents will get it.  All this thinking has ended in my reality of realizing that I don't have one "different" child I have TWO, two that are totally different "different" children and I think that makes me (us) even more "different".  There are lots of families with a disabled child or a delayed child, but how many out there are like us.  I would have to say we are in the minority??

Parents that work always say how lucky I am to be able to stay home, I don't have a choice.  My days are not spent at the park with Skylor or going to Mommy and Me classes, or working out or any of the other things stay at home moms do.  My days are spent taking my girls to doctors and therapy and when I am not dragging Skylor to those appts.  I am home making the endless phone calls to the insurance company, ordering medical supplies, picking up prescriptions, making medication for the day, making more doctor or therapy appts, laundry, cleaning and next thing you know the girls are all home.  Don't get me wrong I do have fun with Skylor during the day and we get out for a walk, but it isn't like most stay at home moms who have the whole day to do whatever.

Then there is Lauren's latest health concerns.  She is on three seizure medications all maxed out and she is still seizing.  The medication causes her to have a lot of secretions which makes her very congested which makes her choke and cough a lot. She cannot regulate her body temp, she fluctuates between 94.5 and 97 all day, most of the time she is freezing cold to the touch.  Her heartrate is only in the 50-60's, normal is in the 100's.  She has started having blood in her diapers, we are still trying to figure out what is going on with this, puberty? Thought was her one seizure medication side effect is bloody urine, but urine test said no, so who knows.  Took her to the orthro a few weeks ago and her right hip is dislocating again :0( but he won't be able to do anything surgery wise because her seizures are not controlled.  She is not eating the volume she needs since everytime I increase she just vomits no matter how slow she gets it, or she gets sick and and can't hold anything down.  I think she has lost a couple of pounds in the past four months.  Alison is now 2 lbs heavier then her.

If I really start thinking about all these things, I can get pretty depressed, BUT I don't let myself stay in that place for long because really we are LUCKY, Lauren and Alison are alive and we have a roof over our head, we may not own that roof but it keeps us dry and warm and contains more love for all our girls then is imaginable.