really, really real?

I might be in denial. i should be alot more freaked out then i am, about pretty much everything. this has been one crap week. i post about how life is turning around for me and then boom. i feel like the little boy at the beginning of despicable me. you know. the one who dropped his ice cream and then gru comes along and makes him a balloon animal only to pop it after watching the little boy enjoy it. and laughs. yep, that would be me this week.

a few week s ago if i had this week it would have taken me months to recover. i would have felt totally defeated. like i was wasting everyone's time. This week (excluding one thing) i have taken the bad news in stride. i am excited by this and a little worried. what if i am just denying my insanity and in a few days i hit the wall? sometimes i laugh at the things that are happening right now. that part i am pretty sure is the crazy. the part that can't handle it, so it laughs. yes, i realize i am talking about my crazy like a thing separate from myself. that is usually what it feels like. like i am possessed. maybe i could get an exorcism? if only it would be fixed that quickly.
either way i figure i should try and enjoy my new found ability to not freak out. even if it might only be for a little while. right?


The Terrible, Horrible, No Good Very Bad Day

I was supposed to get to sleep in today. But Emmeline didn't agree. She cried and screamed until she not only woke up Isa but made in impossible to have any quiet. I could tell it was going to be a terrible horrible no good very bad day.

Then when i tried to feed Emmeline she decided she could do it all by herself. she couldn't.
after breakfast i tried to take a shower. i did all the laundry yesterday. i thought. some how i missed my clothes. i could tell it was going to be a terrible horrible no good very bad day.

i think I'll hibernate.

after my shower i gave the girls a bath. well, they gave the bathroom a bath. i stepped out of the bathroom for a minute to get their clothes. Emmeline went under. and puked in the tub. Isabella HAD to wear a new jacket a friend gave her and the outfit i picked just wouldn't do.

when i tried to get dressed nothing looked right. when i found an outfit that would do i put on my tights. Emmeline pooped. as i was changing her she kicked my with her sharp pointy shoes. i don''t like those shoes. i got a run in my (new) tights. i could tell it was going to be a terrible horrible no good very bad day.

I fixed Emmeline's hair and it looked adorable. at least i thought so anyway. she just wanted me to hold her. i wasn't ready and nicely told her NO!!!!! she 5 point crawled, rubbing her head on the floor like another leg. so much for fixing her hair. i could tell it was going to be a terrible horrible no good very bad day.

Emmeline is asleep now. it's 4pm. she is going to be one happy/hyper baby later but it is totally worth it right now. some days i feel like one great big cosmic joke. but i might be convinced to put off hibernating for a little while longer.



my friend is dying. she shouldn't be. I'm not just saying that because she is young, a mother, wife or friend. i am saying it because she really shouldn't be. a doctor screwed up. big time. now that will cost dearly. it will cost a mother, wife and a friend. what will it cost him? not nearly enough.

selfishly i feel guilt. guilt when i breath, guilt when i look at my kids and realize i will probably be able to see them tomorrow. guilt for thinking that eating that candy bar will make me fat. guilt for having the chance to do so many things over again. to keep trying. i don't think Jess would want me to feel that way. i know she wouldn't. she is amazing. beautifully strong. even now she has a greats sense of humor. she wants people to be happy. i hate goodbyes. i always have. they are so often hard. this one is no exception. as i cry i remember her smile and can't help but smile too. i know she wouldn't want me to be sad. she would want me to learn. make every moment count. give extra hugs. yell less. be grateful.

i love you Jess. look out for us.


My Afternoon

It's high time i posted about Isabella right? honestly i wish it wasn't a post like this but hey. it's what happened.

we were at target. isa did great helping my during groceries so she asked if we could go look at toys. i said yes we can LOOK. in a bout two seconds she had wandered off. i watched her go and stood where i was. she only had a few ways to go so i knew she would run into me in a second. she did. a little panicked. she said, "why didn't you follow me?". i responded that is was her job to follow mommy int eh store not mommy following her. i then turned and looked at the end cap. i turn back around. she is gone. again. rather then freak out i figure she said she wanted to look at toys, she must me in the toy section somewhere so i did a loop around. nothing. another loop. again, nothing. one more loop for good measure and i started trying to calm myself down and say, "she is fine, no one took my kid". one more lap. ok, maybe someone did take my kid. i went over to customer service and let them know. they paged her, waiting longer then a mother with a missing child wants to wait. finally i said she should have been here if she heard it. next thing i know the worker whips out a radio and says something no mother wants to hear about there kid. "CODE YELLOW, CODE YELLOW, CODE YELLOW. WE HAVE A MISSING 7 YEAR OLD IN A WHITE SHIRT AND PLAID SKIRT. NAMED ISABELLA HARRIS." the response was even worse. "I'LL COVER THE GROCERY EXIT". "I'VE GOT THE ELECTRONICS EXIT". "I'VE GOT THE BATHROOMS." next thing i know a couple of buff guys in black outfits come stand by the door checking everyone who leaves. as i stood there looking at the guard i realized. "he is there to make sure no one leaves with MY kid". i burst into tears. granted i am super emotional right now for other reasons but this definitely ranks pretty high on my fear list.

of course it has a good ending or i wouldn't be posting right now. in the end she was playing a video game in electronics. i could have strangled her and hugged her to death at the same time. as soon as she saw me and realized that i had had no idea where she was all that time she freaked out. she started getting all teary and wouldn't leave my side the rest of the trip. not even to load the buggy 3 feet away. when she got to the car. she said "i never want to leave the house again". i have to say. i don't want her to either.



Today was one of em's specialist appointments. Cardiology. that one freaks me out. last year when we went i was sure they would find nothing. i mean she had had at least 30 ultrasounds done on her heart before we moved here. all saying the same thing. it's fine. apparently "fine" doesn't mean that same thing to everyone. apparently it can mean "well, your kid wont die right this second". anyway, they found an ASD (hole) and a Bicuspid Aortic Valve. both of which weren't "fine" to me. granted i didn't do my normal freak out when i got this news because my AMAZING cousin Emily also had an ASD and had open heart surgery a few years ago. she is doing great and her hole was pretty darn big. they didn't find hers until adulthood. It probably isn't the best for her but works out great for me. i have someone to go to with all my questions i forget to ask the cardiologist. anyway, she is great. it really calms my nerves. until today.

we were hoping em's hole was closing/closed. it isn't. not at all. :( not only hasn't it closed even a little but the right side of her heart is beginning to swell. it is no longer in normal limits. needless to say, not what we had hoped. we have been moved to a 6 month check up schedule. he was hoping she would make it to 20kg before we needed to do the surgery route. it isn't looking good. i was afraid this would mean we would have to do open heart. thankfully the surgeon is OK with doing the catheter procedure(described on the ASD treatment section) around 15kg so we only have about 4 lbs to go. he also gave me the clear to feed her as much butter and cream as i want without hurting her heart so it shouldn't be to hard to get 4 lbs in 6 months. (as i was typing this i kind of freaked myself out and had to call the nurse. i mean how do you not freak out about your kids heart swelling!)

oddly I'm not becoming overwhelmed by this. don't get me wrong. i am terrified. absolutely terrified. the overwhelmed thing might change as her appointment and eminent surgery grow closer. i expect it to. i just hope i don't have to watch my daughter wasting away before my very eyes like i have had to do in the past. several times. like i said in my previous post though, she is one tough cookie. she can handle herself. i know that. but in the back of my mind i know there are always risks with having surgery. em will have had 7 after her heart repair. 7 probably before she turns 3. statistically that isn't good. lets hope she is to stubborn to deal with statistics.

as a side joke, josh and i decided to test whether or not anyone was reading the paper work they made us fill out. again. so whenever they asked for an explanation of any of her medical problems we just put "hole". no body said anything. this just validates my point that the paper work is just to cover their butts. they don't read it. they just check to see that you signed it. if that.

i promised cute pictures this time around. these i figure cover two bases. seeing what my little trooper goes through on a routine basis and adoring the cuteness. and fat. but hey, we worked hard on that fat.

In a chair just like us.

our chairs are boring.

something way more interesting.


you've got to be kidding me.

fine i'll do it.

ok so i know she looks totally obese in this picture. it's just the perfect angle to show off all the fat we worked so hard on.


pretty cute right?


Really Living

Through everything with emmeline i kept telling myself "if "this" would just happen i could finally relax". That was back when i thought there was only one thing wrong with her. When we would find another i would think "surely this is it". but it wasn't. not by a long shot. We really were blessed though. CHARGE has affected emmeline in a very small way compared to her peers. Does that make it easier? not really. It's always hard to watch your child struggle. it's weird to think she has a mild case when she has 9 specialists and 7 therapists but that's just how it works. a little bit of everything. then add the stroke and that just makes everything a little more complicated. well let me tell you. MY KID IS AMAZING!!!!!!

even when she was a newborn in the hospital and a doctor would say "i don't think she'll ever..." or "if she doesn't (fill int he blank) then we will have to..." she would turn around and prove them wrong. no, we couldn't trick her or anything. she had to really want it. and usually she did.

Emmeline can make my life pretty miserable. when she does something she goes all the way. none of this half way stuff. if she wanted to sit she would sit, walk she would walk, eat she would eat, stand on the table and scare mommy, check. she comes by her stubbornness fairly. i mean she is half perkins half harris. And it has saved her life. she would never let go. she sacred us several times getting really close to the edge but she still hung on.

even with all her accomplishments before now i still didn't feel that big relief. there was always another huge goal. something i really, really wanted. that made it feel like i couldn't breath in all the way. the other day, i took a breath. a big one. it reached parts of my lungs that haven't moved in a while. it didn't stay that way but i breathed. all of a sudden i could see other things the next feeding, or appointment. things for me. weird. have i done them yet? no. but i actually had room in my brain for them.

the event that really pushed me over the edge of living was emmeline's annual evaluation with ECI. she has been at least 6 months behind in every area since birth. well, after the eval she got the following scores. they are by month age. emmeline is currently 28 months old.

Cognition 29
self help/adaptive 26
communication 21 25%delay. pretty good for having 50% hearing
gross/fine motor 28
social emotional 30!

when they told me the scores i asked if those we just the points she got and not the age. they smiled and said no, it's that age! i was floored! She really is amazing. she did all the hard work. and through her hard work we can both start living. her for the first time, and me again. it has truly been wonderful to watch her grow and learn. pretty much since May 10. before that she was so focused on staying alive. then everything equalized. well, not right away. like i said, she worked/works really hard. if she would every let me video her doing something other then dancing i could show you. you will probably see several more of these type of posts as things start to sink in. i mean i posted plenty about how hard everything was. i figure i should try and give as much time to being happy right?

so, now if i could just remember what to do with an "average" kid.

i have been trying all day to add a couple cute pictures of emmeline to this post but sadly you will have to wait until next time.


A Nice Pick Me Up

i have been kind of burnt out on couponing lately so i haven't been going much. well, i really needed to roll over some rewards so i went out this morning and scored a GREAT deal.

9 sure deodorants
5 Maalox advanced
1 gas prevention
1 nivea arctic freeze after shave moisturizer
1 pro clinical toothpaste


my cvs deal wasn't as good since i had to pay .61 for that one. but when it's all totaled i paid .65 for $65.14 worth of merchandise. not too bad.