Life is hard

There are days that make the others

Worth it. There are days that you can't wait to see end. Those days for me usually are filled with thoughts of the unknown...questioning God's plan and why I am who I am.

Seems like so much of this life is filled with pain. People are losing people they love every day, some having lived long fulfilled lives and others fires were snubbed out to soon.

I ask myself why should you be any different? Because I'm a believer I should be without pain. I used to believe this lie. I know that life will be hard I will struggle to get through it.

I'll try to look in my daughters eyes and just see beauty instead of sadness. I'll try to be sensitive to others struggles and not compare them to my own. I'll try to be ok with the mother, wife, daughter, person that I am instead of feeling guilty. 

I take heart in knowing that I have my god my higher power to call on when I am low. When the days turn to weeks or my load is much to bear...

I know that the power to change it all is in his hands. I also have seem that his time is better than mine. Knowing these lessons hasn't made it any easier to wait on him. 

My miracle, my one wish isn't to have a million dollars or sing on the biggest stage. It's healing, true healing for Ayla. A life not stifled by disease and heartache. For all my children to outlive me...and be happy and be in love. 

Lately there are so many reminders of what cf can do to us, what it steals from us...its so hard to think clearly and positively. 

Most of the attacks on our lives come before our greatest triumph right?! I sure hope in the coming weeks, months, years we have some good news to report....this momma needs a breakthrough....

So I felt like writing today.......

Hospital admissions are a lot like a mutual breakup. Your glad to see them go but still learned a lot from the experience. This last admission was not a tune up so it was different but still had it's challenges.

Anytime you put a 7 year old in a hospital and expose her to numerous tests and procedures as a mom you know your in for heartache. But with CF its a necessary evil and one that gets more frequent as they age. 

It's hard for me to keep those thoughts out of my mind, you know the kind:

-have our best years passed us by?

-what will her future look like?

-when will she know what she's dealing with?

This stay we learned that Ayla is doing very well, she basically got a full work up. Ultrasound, EKG, chest xray, bronch, ENT check up, and pft...and all of these tests were normal. Her liver and pancreas looked perfect which are major concerns. Her Dr. Is still concerned with the amount of illness' she's had this past year, therefore she is recommending homeschool again. For me this is pretty scary. I feel like I'm unable to do all that's required of me at times. I want my kids to have the best of everything and homeschool is quite challenging. 

I know I will make it work, and figure out what's right for us. But it's a daunting task.

During our stay I spent some time in ICU since that's where the bronch'd over the weekend. Wow, that is a hard place to be as a parent. I could roam the halls hearing the vest's shaking the CF patients lungs. I tried to keep my head down but you want to look and it's so hard to see these children lying there, almost lifeless. One appeared to be post transplant. 

Another instance when we went to have her lung function test done, we had to wait until the room was clear. A teen came out in a wheel chair her iv pole in tow and face masked. I knew she had cf too. She didn't make eye contact. She seemed so sad. She had brown hair, I couldn't help but wonder if this was The grown version of Ayla. 

It became overwhelming and I excused myself to the bathroom so I could "lose it" in private. In those instances I can only pray for help. I need strength and I can't make it through on my own. After a few minutes I went out to cheer Ayla on for her lung function test. She needs me to be strong, and I need her to be a kid. Two things that in this life are far harder to come by than I ever imagined....

Trick or Treat 2012

"Rapunzel" and her best pal "pasquel"

Autumn is 11 months!

11 months old!

Love her big brown eyes

Her BIG sister, my best helper!

Daddy and Autumn

What I'm Up To:

Eating everything

learning to walk and have put together 7-8 steps

babbling all the time

love to dance to music

weighing in at about 20 pounds

love following sissy around everywhere

I love to snuggle and love when daddy gets home

Still an insomniac child

What I'm Wearing:

Mom's buying me 12-18 month clothes now

Still wearing size 3 diapers

It's getting cooler so I need clothes

What People Say About Me:

I still get comments on my eyes

That I am full of spunk

That Im petite

That I'm so sweet

Dear Autumn,

I can't believe this is the 11th time I've written to you.  The time has flown by, you are changing each day and are so much fun to watch.  You love to share snacks with me and I love how a tune will catch your ear and you will start bobbing your head.  You always play a "head-shake" game with me when we are changing your diaper.  You personality is really showing now.  I am so lucky to be your mom.  Your dad and I have our special time with you and your sister and nothing compares to that.  We love you boogie!

Autumn is 10 Months Delayed post from 9/29

 10 months old

 sissy is my hero

 wont' keep anything on her head

beauty

What I'm Up To:

trying so hard to walk

so over bows and headbands

talking and being very busy

eating everything off the floor

learning so much each day

Still not a great sleeper...some nights are rough

What Im Wearing:

Size 3 diapers

still warm so all my cute summer stuff

no shoes, bows or anything cute b/c I don't like it

What People Say About Me:

My eyes are so big

That I'm so beautiful and sweet

That I look like my mom

That I look like my dad

That I am a little stinker

A Note From Mom:

Dear Autumn,

Each month goes by and I just can't believe it! I remember having you just like it was yesterday! We love you so much and love to laugh at the cute things you do and say.  You and your sister are the best of friends and I love that.  You are getting so smart and beautiful.  Im so blessed to be your mom.

Autumn is 9 Months Old (delayed post)

Yes she is actually 9.5 now! We have moved and things have been crazy, I did get pics so I am going to post them now. I have been bad about posting lately and hoping to post more when things slow down a little.

What I'm Up To:
Crawling everywhere
Standing up and grabbing everything
Loves shoes, cords and everything else that makes mom cringe
Jabbering all the time, mostly Ma-Ma
I have started bottle feeding and am doing well with it
I eat "food" 3 times a day
I love my paci, I love to find lots of paci's and switch them out
Still love the do purse my lips and blow/spit
I have stood un-supported twice for a couple seconds
I will be walking soon

What I'm Wearing:
Still going barefoot while we can, summer here is so hot
Wearing 12-18 month sleepers and 12 month outfits
My hair is growing in a lot and mom loves to put bows and headbands on me (I don't like them much)

What People Say About me:
That I'm so serious
Big eyes
Gorgeous

A Note From Mommy:
Dear Autumn,
We are loving watching you change and grow.  You love your daddy so much, he gets up with you most days (while mommy works out) and you really love that time with him.  You are so sweet and snuggly.  I can't believe you will be a year old soon! This has really gone too fast for me.
This month let's slow time down a little and just enjoy being together....I love you

Autumn is 8 Months old!

What I've Been Up To:

I have been super busy this month with "firsts"

I began crawling, pulling up and standing

I enjoy getting around the house and am gaining speed

I have been making all kinds of sounds and have given "kisses" twice

I love to make eye contact with people and stare them down

I have been burying my face when I feel shy (it's so cute)

Putting my lips together and blowing air to make a "ppppfffffff" sound

What I'm Wearing:

Still size three diapers 

9-12 month outfits

What People Say About Me:

Most of the same stuff

Big Eyes

Beautiful big smile

So gorgeous

A Note From Mommy:

Dear Autumn,

This month has been quite a lot of firsts for you, these milestones you are hitting let me know that you are quickly growing up! Too fast for my liking! Your Dr. says you need to pack on the pounds and so mommy needs to feed you more.  We may have to introduce a bottle and I don't think it's going to be an easy process. You haven't been eating much foods lately because he wants you to drink lots so bear with me during this transition and please go back to sleeping :) Your daddy and sissy love you so much and we all love watching you as the days pass by.  I can't believe it's been 8 months since you were born! I love you so much!