Thursday, September 25, 2014

Happy day Auri!!!

This time 6 years ago, i was sitting in a NICU staring at my precious Auriana Faith wondering what would become of her. She was born premature, wirh a serious heart defect, had to be tube fed, and was just so tiny and fragile. I prayed ever second that i would be able to take my baby home. God answered those prayers!!
Auriana came home with us on October 2nd, 2008!!
Since then, she has grown, had several setbacks, but has overcome everything. I recall the day i took her home, the NICU physician looked at me and said "now, we are letting you take her home like this because you are so eager to take her home, but remember, this baby has lots of problems. She may never eat on her own, she may never walk or talk like your other daughter... Just don't expect too much. After all, you're lucky she is alive."
Yes, well, i trusted that God had another plan for my tiny little cabbage patch sized baby.
And He did!!
She is still tiny... At 6 years old now she is the size of a 2 year old. She weighs 22 pounds. Auri has had 3 open heart surgeries, numerous other procedures, and overcome many struggles.
But, she does eat (weaned her from the feeding tube at 29 months old), she walks and talks and smiles!! She is a happy little girl most days and has recently learned all her colors, recognizes some letters and numbers, and basic shapes!! She is doing wonderful in the home school program i have decided to use to teach her... She has already exceded what she knew last year.
Auri does attwnd regular speech, occupational,  and physical therapy. But she has surpassed the age of 5, which the NICU physician told me was not likely and she is THRIVING!!! She loves life!!!
This past Saturday we celebrated her 6th birthday with a few close friends and family. She had her Barney cake and she loved it!! She said all day long "its MY happy day!" "it's MY DAY!!" her birthday was actually last Wednesday, September 17, and every day since has been "her happy day". Her favorite things are Barney, signing time, mickey mouse, doc mcstuffins, and jake and the neverland pirates.
She loves her new barney doll she got for her birthday.
At her party, she sang all the words to "happy birthday"! Cutest thing ever!!
This is our season of birthdays around here.
My birthday is 3 days before Auri's and next we will soon be giving birth to a new addition who we have already named Abby, then Kylee turns 9 october 30 and then Lily turns 3 December 1!! A busy time of year around here!! I wouldn't have it any other way!!! I love my little girls and love watching them and seeing who they become...
So for now Happy sixth birthday to my precious Auri!!! God definitely knew what he was doing when he gave me you!!!

Monday, August 25, 2014

nobody chooses online nonsense over cleaning... right?

Yep... and here I sit again in front of the computer, scrolling through Facebook after I "just got on for a minute to check email" after I got the kids to bed. 
Sink full of dishes and a pile of laundry stare at me as I type this... but I ignore it.
The 3500 books and papers a kid pulled off the book shelf mid tantrum this evening is still laying here in the floor...
but yet...
I'm sitting here typing randomness into the blank screen on my computer.... after spending the past 20 minutes scrolling through nonsense on Facebook...
why?
well, because it is somewhat of an escape I guess... reality disappears into the computer screen..
isn't it like that for a lot of parents?
So here's just a snip it of why I need 30 minutes to just let the mess disappear and pretend I'm on some little island in the middle of nowhere... at least one night (or more) a week the night goes just a little like this... turn off Tv to get kids in the bathtub... listen to the m scream how that was their FAVORITE SHOW and it WILL NEVER COME ON AGAIN and IM SO MEAN... yeah yeah... ok kid... that show has come on probably 50 times in the past week and I guarantee it will be back on tomorrow. 
Meanwhile another child is in the bathroom because I forgot to shut the door... what is this child doing in the bathroom? oh, just dumping water in the floor. water from where? oh... just the toilet water... that's all. Great. this one gets bath number 3 today. 
So, one kid bathed and dried and dressed and in the bed. 
(and bathroom floor err... mopped with a towel...)
One more in the background still throwing a fit that the TV was shut off.
The other comes running in to get her tub time... ok... this one loves the tub so she doesn't want to get out.
We HAVE to get out. still have another one that needs hair washed tonight.
Ok... so this one gets out (after bribery) what? no I don't bribe them... never. so 2 down to bed. 
Now it's past "bed time". The dilemma... do I fight to get this one in the bath tub or do I cave? hah... who wins? we compromise wash the hair over the edge of the tub. yes you had a bath last night. yes you can get one again tomorrow night. ok. finally. bed. 
All. Of, Them. In. Bed.

So... back to the disaster zone that has taken over my living room...
Yes... it will get cleaned up...
eventually...

I know other mothers can totally relate to this scenario, right?
come on... I can't be the only one to not have children who are angels all the time...
hah...
funny thing is when they are gone... even just for 1 night... I have no idea what to even do. In fact, I think I miss the chaos and commotion that has become my life...

So... back to reality now... the dishes will probably get done tonight, the books will get put away... lesson plan will get done for school tomorrow.... then I'm going to bed to start it all over again in the morning... 

oh, did I mention... I'm also 8 months pregnant and I home school my special needs child? Yep. 

I am going to envision "happy thoughts"... Rainbows and lollipops and fairies that magically clean my house for me... maybe our day will be filled with sunshine tomorrow... yes.... sunshine and happy thoughts and everyone will listen and no one will complain. That's it.... 

"Just think of Happy Thoughts and you'll fly" - Peter Pan

"If you want it, you must will it. If you will it, it will be yours." - The Mighty Sven


We will have a good, calm day tomorrow.... we will have a good, calm day tomorrow... we will have a good, calm day tomorrow...







Wednesday, June 4, 2014

Blessed...

Blessed.... that I AM!!
Sitting here reflecting on my recent past and realizing how very blessed I truly am, even though it is hard for me to see at times through all the daily stresses and feelings of being just exhausted and overwhelmed.
I have been blessed to be called to be a mother! This is something I often take for granted, sadly. God has gifted me with 3 beautiful little girls... each with unique qualities.
Kylee--Such a bright girl-- I am starting to realize that often she is just misunderstood. She seems to see things differently. Kylee remembers things from years past as if they happened yesterday. She remembers everything she reads and she can see stories in her head... and TV shows... and songs... he can vividly recall every line. With the right tools she will be able to use this gift for good in the future.
Auriana--my little fighter--doctors told me the whole time she grew in my belly that she would surely not live and if she did she wouldn't live long and would never walk or talk. She has proved them wrong. She walks. She talks. And so much more. She also has memory like her big sister, that is often misunderstood. Auri remembers dances that she sees in songs from Signing Time and Barney. She replays these in her head and acts them out all the time. I only wish I could learn to channel this gift into teaching her other things. I truly believe she will continue to prove the world wrong. Even I do not know the extent of what she can learn and how she can succeed.
Lily--Such a sweet caring girl--a little ray of sunshine in the morning, she wakes everyone up (much to early at times) with "good morning. I love you." with a huge smile. This wake up call is often met with a much less energetic "Liilllyyy" from those she wakes. This and her truly caring spirit and her concern for those around her... these alone will get her far in life. I can not wait to see what the future holds for her.

I take for granted every day what great things my girls have brought to my life!

I pray for the future that I can see the blessings in front of my eyes and not focus on all the difficult things.

Monday, April 28, 2014

Life is life....

So, I used to write all the time. I used to have so much to talk about.
Lately, however, I feel like everything just blurs together. Life is such a fog.
Life.... is just.....well, life.

There are months and months between my posts now.
Since August 2013 we've past Auriana's 5th birthday, Buddy Walk, Kylee's 8th birthday, Halloween, Thanksgiving, Lily's 2nd birthday, Christmas, several snow days this year, Valentines Day, Auriana being hospitalized for pneumonia, me finding out I'm pregnant again, and most recently Easter! That's like a LOT!!
Why do I find less and less time that I have "me time" to write?
Well, I guess because I am living life and trying my best to be a good mother to my girls.
I take for grated the little things I should be making note of for the memory books. I feel like I miss so much just by always being on the go. We truly are always going somewhere. And then we get caught up in the importance of petty things...laundry needs done, dishes need done, clean the house, clean the car, etc etc.
I want so badly to slow this life down some and just stop to appreciate and enjoy the small memories of my children.

We went to the beach just a few weeks ago. For about 5 days it was as if we finally had a break.
We could just stop.
We could just relax.
No one was complaining, no one was whining (for the most part), there were no major tantrums.
Everyone was happy. Smiling. Even though that water was freezing, just the fact that we were on the beach and the simple sound of the waves was so relaxing.
I wish it were possible to live life like that... relaxing in the sand on the beach, watching the kids build sand castles and make sand angels, listening to the sounds of waves and laughter.
Sometimes I have ideas cross my mind... How wonderful it would be to just live in the middle of nowhere on some little self-sustaining farm with no appointments, no "time to be at school", no schedule, no drama. Just take my little girls and run away from everything.
 However, that is not reality.

Reality is life is hard, life is full of drama and stress, life is full of expectations, disappointments even.
But, if you think about it all... life is also full of joy, life is full of love, life is full of hugs and kisses.
I just want to stop focusing on everything that is hard.
And start focusing on the joy. The laughter. The smiles on my babies faces when they are playing in the yard. I can not wait until school is over for the year so when everything at home becomes overwhelming we can just pick up and leave the mess. leave the stress. Go somewhere... anywhere... the park down the road... the lake with the ducks.... some place relaxing.
I plan to make more of a focus on the fact that life is not perfect. life does not have to be perfect.
When I take my kids places this summer, I am going to leave all the imperfection in life behind and only take happiness and relaxation with us.
I'm going to sit at that park and watch my babies run and smile and laugh.
Not even allow the thought of "oh, but we have to get home to clean the mess." The mess will be there. There will always be messes.

My babies will only be babies for a short while.
I'm already seeing that with Kylee. She is 8.
EIGHT.
In 8 more years she will be driving.
I so want to just enjoy the joy in her now, while I still can.

That poor child is more like me than she even knows. She has such a hard time with dwelling on things in her life and it causes her so much stress and anxiety.
I don't feel like I've given her a very good example of how to handle stress either.
Hah. There's me another summer goal.

Seriously... if you see me out and about and my children and screaming and I'm not saying a word... don't look at e like I'm crazy... well, do. Because, maybe it's crazy to just not even care what people think anymore. To not even care if you make it someplace on time or make it at all for that matter. But I am so sick of dwelling on being places on time and trying to please people and trying to keep my kids looking "perfect".
Guess what people! News Flash! We. Are. Not. Perfect! And even bigger news flash.... It. Does. Not. Matter!
Kids cry... just a fact. Kids who have trouble processing their senses and emotions... well, they cry more. Who. Cares. ? Not this Momma. Not anymore.

I think about what we've been through, these girls and me.
Auriana was born with so many complications. That was the focus for so so long. Get Auri's heart fixed. Get Auri to gain weight. Get Auri to eat without a tube. Guess what! We did that! All of that! She eats, she talks, she walks, she goes to school, she makes choices for herself!!!
I no longer care about what her testing results are. I do not care if she can ever write her name. I want her happy and healthy. I want her to go to school with typical ( for her) peers. I see her every day. Auriana fits in perfectly with 3 and 4 year olds. She is 5.
Who care.
The thought has crossed my mind to just forget about the reality of the public school system ever realizing and recognizing what she is capable of and focusing on what's important and not "making sure children like this are as close to functioning on a normal level academically".... I want her to fumction on a normal level socially. That's all I want for her. I. Do. Not. Care. if she writes her name, if she reads, if she can take a standardized test. If she can pass the stupid cognitive and physical evaluation that does not give accurate results of what a child knows. I seriously have thought about just taking her out of public school and putting her in a typical preschool with typical kids. Put her in a 4 year old church preschool.
Really would that be so terrible?
Would I be a horrible mother if I just say "let's put kindergarten on hold a year and just put her with typical kids." I already take her to PT, OT, sensory therapy, and Speech. And what good is it doing her to be put in a kindergarten class that is contained with nothing but special needs children?
Can a typical preschool handle her? She does have some sensory meltdowns and she doesn't verbalize as well as some children. But, there are typical kids that are the same way.
I just want her to be happy and I am tired of me feeling stressed and like public school does not have a good fit fr her. They don't. We have been blessed with wonderful public school preschool teachers, but I just don't know that the public kindergarten offered is the best fit for her right now.
Just a thought.

I am so thankful for Lily and I feel like I take her for granted also. Lily is my baby.
She is the only "morning person" in the whole house. She wakes up every morning saying "good morning Kylee, I loves you.", "good morning Auri, I love you.", "good morning mommy, I love you." and then "good morning sun!"
I wish I had that outlook in the mornings. I wish I could just be happy to wake up.
I hope she never looses that.
Lily seems happy about the "baby in my tummy", but I hope that once the baby is out she is just as happy.

My fear with each of my children is that a new baby makes them feel that they are no longer the focus. I hate that. I want them each to know how much I LOVE THEM! I truly love all of them. through each of their differences and each of their challenges, I LOVE them!

I think about the way God loves each of us. His children. We are not perfect. We are difficult to deal with at best. We don't listen. We disobey. We yell at Him. We complain. We don't appreciate Him or what He does for us. But, still. He love us!

So, on that note....
It is now time for the start of my day....
Time to live life.
The kids wake up in less than an hour.
I want to wake them each up with "God morning, I love you!"

Tuesday, August 6, 2013

Back to school...

Well.... summer is over again. "Back to school day" was yesterday. I have been a lot busier than normal since I am working now as a CNA. I haven't worked, until now, since Kylee was born over 7 years ago. I had always intended to be a stay at home mother and stay home to raise my children. Well, that plan didn't work out so well, I guess. Anyway...THIS was the very FIRST "back to school day" that I have not been the one to drop off my kids and walk them in to school. I actually handled it a lot better than I thought I would. And both Kylee and Auriana seem to enjoy their classes and are doing well at school so far. Lily, I'm sure, misses having her sisters around all day... and (i hope) misses her "Momma" too (at least a little). She has been with her "Grandmother" though this week who she loves.
Oh.... more life changes......only for the better. I said yesterday to someone "I don't even feel like I'm in control of my life. All this is just happening and I have no choice but to just go with it".... she said "Because you're not in control of your life, God is". Well... there is that!

Wednesday, June 5, 2013

Shame on Chick-Fil-A....

Now, don't get me wrong... I LOVE Chick-Fil-A and everything that CFA stands for, which is part of the reason I say shame in this circumstance!
Today, I was slightly disappointed in Chick-Fil-A...
So, let me explain why... We met some friends at a local CFA for lunch and to let the kids all play together. Now, as many of you I am sure are aware of, kids can trade their "toy" from the kids meal for an ice cream. So, my kids were trading their toys for an ice cream. But my friend's kids are whey protein intolerant which means that they can not digest whey protein enzymes in non-cooked dairy products (basically they can not have uncooked milk, ie. Ice Cream!). So, we explained this to the assistant manager after we tried to trade their books for cookies instead of ice creams and were told that was not an option. I asked if it was an issue of money... according to the menu, the ice cream cone is $1.19 and the cookie is $1.09.... hmmm.... cookie is 10 cents LESS... so what is the problem?, I asked. She said it was "against their policy". Funny, since I had just done this at a different CFA location the week before with no problems at all!! Ok, so it is you policy to NOT accommodate a food allergy with a viable alternative that is already on your menu and is of equal or lesser value? Wow! Ok! That makes perfect sense! Then this girl proceeds to tell me in a smart-ass tone "Our cookies have milk in them"... Um... hello... I just explained to you that the proteins in the cookie have been broken down already by the heat, the ice cream they haven't!! So, I explain it to her again... she says "wasn't aware of that, but still our operator has chosen not to allow that." The American's With Disabilities Act recognizes food allergies as a disability and requires that "reasonable accommodations be offered." So, how can the operator of this specific Chick-Fil-A establishment choose to not follow a federal law?!?!?! I don't know, but hoping to find that out soon..... just saying....

Friday, February 1, 2013

CHD....

CHD.... three little letters... C. H. D.
What does it mean?
Congenital. Heart. Defect.
A Congenital Heart Defect is a heart defect that is present at birth. There is no cure, only treatment through medications and surgeries. 1 in every 100 babies born has some type of congenital Heart Defect... ranging from mild arrhythmia and murmurs to major complicated defects requiring several tedious surgeries to enable the child's heart to somewhat function normally.

We have experienced our share of the complications and strain a CHD can put on a family.
Auriana Faith was born on September 17, 2008 after I spent several weeks in the hospital on monitors due to umbilical cord absent flow and pre-eclampsia. An ultrasound around 18 weeks revealed that Auriana had a severe heart defect known as AV Canal Defect and possibly a chromosome abnormality. When she was born 5 weeks early, Auri weighed just 3 lbs. 10 oz. We found that she had Down Syndrome and a heart defect within hours of her birth. She got her first echo-cardiogram at just 1 day old! We were told that Auriana had Complete AV Canal Defect-- No walls in her heart at all!! All her blood mixed up together. She was too weak to eat and had to be NG Tube fed. She had her first open heart surgery around 4 months old. In this surgery, the surgeon went into her heart to build the walls out of gortex patches. She did well and was in the hospital about 10 days. She never learned to eat properly though and was tube fed until she was 29 months old. We were told that Auriana may need another open heart surgery at 10-15 years old to replace the gortex. She was followed by a cardiologist every 6 months. In July of 2011, however, we noticed her tiring more easily and turning purple often. I called and made her a cardiologist appointment. When her cardiologist did an echo he noticed that she had narrowing in her aorta-- aortic stenosis. She has another open heart surgery-- subaortic membrane resectioning--in September of 2011, just before her 3rd birthday! They left some of the membrane intact thinking that it was better to leave some since the conduction system of the heart is located in this area. The surgeon explained that he didn't want to risk her needing a pacemaker placed and wanted to give her more time to grow. He said she would probably need another surgery in 3-5 years to open up the aorta some more. Just a few weeks ago Auriana begin having chest pains and after a cadiac cath was done, we were told that the narrowing in Auriana's aorta was measuring around 80 percent (which was higher than it was prior to her previous surgery just 15 months ago!) She also had developed narrowing all the way up into her left ventricular outflow tract (LVOTO- Left Ventricular outflow tract obstruction). She needed surgery, once again, within the month! We went into this surgery on January 25, 2013 with an extremely high probability of her needing a pacemaker and with an expectation for a 6-8 hour surgery. Just 4 hours after surgery began, it was completed and Auriana amazingly had her own heart rhythm!! We will be heading home tomorrow, January 28, just 3 days after surgery!! We are hoping not to need anymore surgeries until the gortex replacement around 10 to 15 years old. Auriana has been a little trooper though! She is so strong and has taught me to be thankful for the little things in life! Auriana has a 7 year old sister, Kylee, and a 1 year old sister, Lily Hope who have been a huge support to her during her surgery! We thank God daily for being with Auriana and allowing us the blessing of raising her, Kylee, and Lily!! My life would not be the same without my 3 little girls in it! God continues to bless us through Auriana on a daily basis!
Today marks 1 week exactly since her THIRD open heart surgery! Last week at this time I was sitting in a waiting room waiting on news from the surgeon. This morning I woke up to my precious Auri smiling and playing with toys in her bed! Her smile through all her pain says it all! She is just happy... always....she will be in pain but still says "I so happy" as she signs happy as if she's doing the 'chicken dance' and shows her adorable grin.

CHD has taught me to accept the things I can not change and to slow down and enjoy the precious time I have with my children.

I have met so many people through our journey with CHD who were not lucky enough to know before their child was born that their baby had a heart defect. I was lucky enough to know and to be prepared and have time to research doctors who could best help her. Most CHDs are visible on ultrasound. And most CHDs are detectable at birth with a non-invasive test called pulse-oximetry. The pulse oximetry test measures the amount of oxygen in the blood and only takes about a minute to read.

This month is all about hearts... valentines day is this month, and it is also CHD Awareness month. Remember and honor all those little warriors living with Congenital Heart Defects! Most of them have gone through so much more than any of us adults have ever endured and they do it all with a smile!

The hospital my daughter has her surgeries at gives the children Beads of Courage. They earn a different bead for each procedure, test, and surgery. This is Auriana with her necklace. You can see by the number of beads just how much she has gone through. These are all just from her hospital stays.