Christmas mommy

I have traveled
Many moonless night
Cold and weary
With a babe inside
And I wonder
What I've done
Holy Father
You have come
Chosen me now
To carry your son

I am waiting
in a silent prayer
I am frightened
by the load I bear
In a world as cold as stone
Must I walk this path alone
Be with me now
Be with me now

[chorus:]
-----------------------------------
Breath of Heaven
Hold me together
Be forever near me
Breath of Heaven

Breath of Heaven
Lighten my darkness
Pour over me, your holyness
For your holy Breath of Heaven
-----------------------------------

Do you wonder
As you watch my face
If a wiser one, should of had my place
But I offer-all I am
For the mercy-of your plan
Help me be strong
Help me be
Help me

This song is not played often enough on the radio at Christmas time, so I get excited when I do hear it! It really makes me think about the miracle of Jesus' birth and the amazement I feel at what Mary had to go through surrounds me. I tried so many times to put myself in her shoes when I was childless but the depth of my understanding has increased by leaps and bounds now that I have Calleigh. To have gone through all that with such Faith is amazing to me. I can only hope to some day have half as much faith as Mary had.

Calleigh had her check up at Children's yesterday and it went well! She is still up in the 61st percentile so we (and the doctor) are happy with her progress! The doctor said her lungs sound great and she is doing well. She is now big enough to be fitted with a vest. That means that we don't have to do her pity pats except when we travel and can't take te vest with us. The vest will take care of clearing her airways out from mucus! :)

She did have to have blood drawn for routine tests. Boo! haha But she was a champ for the first few minutes. It went downhill after that because they had to stick her a second time but that did the trick and they got what they needed. We pray all the tests come back wonderful! :)

Merry Christmas everyone, may we all remember the Reason for the Season! :)

My prayer for Calleigh: Thank you Jesus for your hand on my daughter. Thank you that she is doing well and has been gaining weight. Please continue to place your hand on her pancreas and her lungs so that she my continue to grow and do well. I pray that she has a wonderful Christmas full of learning about You. Please help her to trust her mommy and daddy when they put the vest on her - I know it will be scary the first few times. Please help her to feel your comfort as she gets used to this new phase of CF. Thank you Jesus for your love and comfort for me and Kevin during these trials. Amen.


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Normal Mommy

This week I feel like a "normal" mommy. This week I am no different from any other mommy who is about to celebrate their child's first birthday. It's happy,exciting, and painful - the best term really is bittersweet.

Kevin keeps trying to remind me that it is "just" one birthday. She will have many many more birthdays and many more "firsts," yada yada yada.... But it's so hard as a mommy - she's not a little baby anymore (not that it isn't as a daddy....). She is now a toddler. And I know that's why we have babies - to help/watch them grow every step of the way, but it's so hard! I don't know how my mom has done it. Sometimes the tears just well up inside my eyes at how fast time is flying. She barely fits in my arms to rock her to sleep these days. Next thing I know it will be time to watch her walk down the aisle towards the man of her dreams!

I should stop focusing on those things. I need to focus on all the happy things. I don't want Calleigh to grow up with a mommy who cries at EVERYthing.... although she will have to deal with the fact that she has a mommy who cries at MOST things. :)

These days my "almost-toddler" is so close to walking and talking. She recognizes Mama and Dada, even though she doesn't quite say the words. Although I think she has learned to say No....but I am going to ignore that one! lol She loves to walk along the couch and with our help, she may be close to actually trying it on her own one of these days (I just hope I am nearby!).

She loves to put the shapes in the blocks, and she LOVES to dance! My little dancer.

Although she did learn to bite this week. :(

Calleigh is honestly one of the happiest babies I could ever have hoped for. I love her little personality and her little smile. She makes the funniest faces in order to express herself! lol

My Prayer for Calleigh for her Birthday: Lord Jesus, thank you for the sweet little girl that blesses my every moment. Thank you for her smile, for her funny faces, and for her dancing. Please place Your hand on her beautiful head as she turns 1 and starts her journey through being a toddler. I pray that You will walk with her each baby step and hold her hand as she explores. And as always, Jesus, please heal her little body, help her pancreas to work and to allow the enzymes to help when it doesn't. Please help her lungs to stay clear, and please help the tiny cough she has right now to go away. Amen.

My loving husband

Calleigh has been sick the past couple of days, and of course with my stupid immune system that means that I am as well. :(

As sad as that is, it makes me realize just how lucky she and I are to have Kevin. Calleigh will grow up to know her father well, to know she is unconditionally loved by him and to know that he will be there no matter how big the boo-boo is. He will be there to dance with her at her father/daughter dances, he will (maybe begrudgingly) take her to the Jonas Brothers (or the like) concerts, and he will certainly have tea with her and her dolls. This may embarrass him to no end, but that is something that she will treasure and that most of her friends will never be able to say.

I also am fascinated by mommy chat boards where people whine “hubby never gives me the weekend off from the baby” or “hubby thinks he should get the weekend off from baby.” As much as I lean on Kevin for the sick times because I am tired, etc, I never in a million years consider that one of us should get a night “off” from her. Most of the time I feel like we fight to hold her. :) But it’s strange to think of others that aren’t that way, because we love every second with her. I do understand that we both need nights to recoup, to energize, etc. but for the most part, we do that after she is in bed, etc. Even on our date nights, it isn’t a “night off” from her, it is a night to reconnect with each other. And we miss her every second.

Last weekend Kevin and I went out with a bunch of friends from high school, and someone made an observation about the fact that I brought up the subject of one or more ex-boyfriends a few times that night. I have been thinking about that and I think I realized why (other than when with old friends, it’s hard not to reminisce). For so long I was dating guys that were not anywhere near what I really wanted. A few of them might have been nice guys, but for the most part none of them were even close to the life I wanted. Bring time up to Kevin and he is every single bit of what I want, need, and never knew I wanted. Even after 4 years I am still a.m.a.z.e.d. that God brought him into my life.

I love my husband, he is wonderful, he is everything I never knew to ask for. And he is one of the most perfect fathers I have ever met. Calleigh and I love you Kevin and thank you for being you who are.


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Real Live Woman

So this weekend was Dewey’s marathon for Calleigh.  I just have to say that I am SUPER impressed he did it in 2 hours!  Seriously, even when someone has trained for it, I think running a marathon in 2 hours is amazing!  GO DEWEY!!!!  Calleigh says you did awesome! :)

Recently I got my iPod back out and started listening to some old songs that I used to love.  One of them got my attention as something I really want my daughter to think about, as well as help me remember a few things, especially about the wonderful man I married.

“I don’t buy the lines in magazines that tell me what I’ve got to be;

Don’t base my life on a movie screen, I don’t fit the mold society has planned.

Don’t need to be 19 years old or starve myself for some weight I’m told;

Or turn men’s heads, been down that road, and I thank God I finally know just who I am.

I ain’t a movie star, may never see the view from where they are.  And this old town may be as far as I’m going.

What he’ll hold tonight in his hands, he swears is so much better than anything that this old world can show him.”

Sung by Trisha Yearwood

Too often I look at the skinny women around me and wish I was back to the size I was when I was younger.  I know, I am not overweight, and I did lose a lot of the baby weight pretty fast, but it’s still hard with the tiny women around me.  I look at my mother and see that she looks fabulous for her age, and I hope I look as good as her at her age.  But her security in that is not what I think it should be. 

So with the two of us as insecure about ourselves it makes me think of two things.  One – I want to start a lifestyle that treats my body well.  I want to work out, and be active so that I can be confident in who I am.  I don’t need to be super skinny, but I want to be fit so that later in life I can also be confident.  But Two – I want to be confident in myself no matter what the scale says.  I want to be healthy but not obsess over the weight, because I don’t want my daughter to think that a certain weight is what defines me, or her. Especially since while I try to keep the weight off, she will be trying to put weight on.  And that is scary to me.

I want her to realize that a real life woman is worth more than a skinny model.  Kevin will love me no matter if I gain 10 pounds or lose 10 pounds.  Having a husband love you for who you are is worth so much more than the 15 pounds I feel I want to lose.  I want Calleigh to find that kind of love.

Prayer for Calleigh:  Lord, please heal my daughter.  Please help her little lungs to continue to give her body the oxygen it needs.  Help her little pancreas to continue to accept the help that the enzymes give her.  Thank you that she is getting her teeth in, please help ease the pain that comes with it.  Father, I ask that you hold her hand throughout life.  Walk with her, carry her when she needs you, and allow her to feel your presence at all times.  Thank you that she is happy, loving, and capable.  Please give her confidence in herself, in her beauty and in You.  Lord, I pray that she finds a husband like her Daddy, Uncle Aaron and Crappaw, solid, Jesus loving men.  Thank you for letting me borrow her from you for a while and give me strength to give her back to You as You ask her to do Your Work.  :)

Lions and Tigers and Bears Oh My!

Let's face it - going from 1 kid to 3 kids is a big jump.  But a fun one. :)  We had Miles and Mia all weekend with us (more than just our Saturday time) and we decided it would be fun to go to the Zoo!  So Mom, Dad, Kevin, me and all.three.kids. packed up in the car and headed down!  

Kevin was a bit stressed because that's a lot to take on, but it definitely was a ton of fun!  

Miles got to ride the train...

 Calleigh loved the cats... 

but poor Mia was too pooped to pop!  

It did get hot and she was just so tired.  So it was early to bed that night but it was worth it! :)

Today was great - I got Calleigh to eat peas, cheese, a few bites of pasta and a few bites of bread, all before her normal baby food and a full bottle! :)  So maybe we are on our way to eating table food!  

My prayer for Calleigh: Lord, thank you for calming my fears about transitioning Calleigh to food.  Thank you that she seems to be doing so well with her eating and I pray that her next appointment the doctor says that she has gained weight well.  Please continue to be with her, to keep her lungs and pancreas working.  I pray that she enjoys her time with her cousins, friends and family.  Thank you for her smile and her love.  And please slow down time just a little... :)  

Cincinnati's Finest

Last Friday night = Cincinnati's Finest Fundraiser for CF = AWESOME!

Hors d'oeuvres, great band, dancing (sort of!), silent auction, etc. were all great parts of the awesome night!  We even bid on a few things but (thankfully) didn't win.  :)  

The goal was that nominees for the title of Cincinnati's Finest Young Professional took the past 3 months to raise money for CF, and the one who raised the most won!  That happened to be a woman named Lindsey, who actually went to high school with Kevin, although they didn't know each other.  She raised 15,000!!  And the whole even raised something near 60,000!!!  Amazing!!

The nominee we were there to support, though he didn't win, had to be one of the sweetest guys we are privileged to know!  Bob Herzog raised money for this event in honor of Calleigh.  :)  He used her pictures on the news and everything, it was so fun! And that night I finally got to meet him, and his wife, Cali.  Kevin always talked about how working with Bob was so neat, and I loved getting to meet him!  He and his wife are such sweet people, and it was an honor to sit and get to know them.  :)

But what made the evening (and myself cry of course!) was seeing 9 year old Kylee, who has CF, give a speech.  She talked about what life is like, how she does get to do things normal kids do, and how excited/thankful she was that the Cincinnati's Finest contestants raised so much money!   Kylee was diagnosed at birth with CF and has had to do the breathing treatments and enzymes her whole life.  What's awesome is that the CF doctors just told her that she no longer has to take enzymes, her pancreas has started to respond normally!!!  That was so exciting to hear!  It's kind of my secret hope that the doctors will say that about Calleigh..... lol    But at the end of the night I actually went up to Kylee crying and gave her a hug... :)    It was so special to meet her.  

All in all, AWESOME night!  Kevin and I feel we will be doing this for years to come!  :)  And are already thinking of who we can nominate for next year!

Today's prayer for Calleigh: Lord, while I realize that Calleigh has this disease for a reason, and is doing remarkably well with it, I still pray that like Kylee, you could someday work a miracle in her, if it is your will.  In the meantime, please keep her pancreas responding to the enzymes and her lungs clear of sticky mucus.  Please hep her to grow, laugh, love, and only hurt a little... :)  Please help her to say Mama soon!  I pray that she always know You, believe in You, and praise Your name.  Please help Kevin and I to live our lives the way you want us to so we may be an example to her as my parents were to me.  Amen.

Forgetful Mommy

I forgot enzymes for the first time this past Sunday...... I felt like a horrible Mommy, but luckily MY mommy was home and available to bring them to me. :) While we are doing the trial for the new enzyme it's not like I can stash some for emergencies like I did with her old ones. So I just have to be more careful.

Speaking of the trial.... that's going very strangely. The first 10 days were the "constant" to make sure she could do the actual enzyme itself, in 3.5 pills that were 5,000 units each, no big deal. The second 10 days were to test the different doses, meaning we gave her 6 pills of 3,000 units each but in the same way we did before the trial (on spoonfuls of babyfood). The 10 days we just started yesterday are to test the new method of giving her the enzymes. The new method: enzymes in apple juice in a syringe with a nipple.

Let me tell you, that was not easy.....It was the strangest thing. Calleigh hasn't had apple juice yet (and neither would most infants they would do this with if it gets approved) so she dribbled it out of her mouth more than she drank it. And then the apple juice was gone and the enzymes were just stuck in the tube. Not easy. Of course we aren't giving up, but day #1 of new method = NO FUN.

Calleigh got to hang out with Aunt Sass last night and for some reason she still likes her... who knows! lol It was good to see them together. I can't wait for Aunt Snaves to come home to spend more time with Calleigh too. :)

Today's prayer for Calleigh: Lord, I pray that until Calleigh is old enough to decide for herself that she doesn't mind doing trials. And I pray that she is safe through them and that her participation in them gives the CF Foundation the help they need to progress with medications and methods that make the lives of CF children easier and less painful. I pray that these trials lead to a cure for CF. I pray that when Calleigh IS old enough to have an opinion on doing these trials that she decides it is well worth her time and effort. I pray that she realizes that her part in these trials has been a huge help to the lives of others and the progression of medicine. And as always, please help her little lungs to function (and to kick the bit of mucus lodged in there this week) and that her pancreas keeps digesting all the nutrients they are supposed to. Please help her to have a good day with Jessica and Ezzie tomorrow and to know her mommy is always thinking about her.


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Blessings

Just so you know - today was better, sickness wise. :)

 

Today I couldn't help but think about a blessing God has give to us.  At just the moment when Calleigh's medical bills started adding up, God sent Dewey.  No one can really understand the blessing that the entire Hughes family has been to not only me, but my entire family.  So much so that they are an extension of our family.  But even more than that, Dewey has decided that he wants to help with Calleigh's medical bills by running a marathon to raise money for her.  I am literally in tears as I think about how much that will help and mean to us.  I know most families feel the pain of the economy right now, with or without CF, so we feel so blessed.  God also blessed me with the time this week to have the bank account set up for Calleigh, which was amazing!  Now I just have to figure out how to link the pay pal account to her facebook and this blog so Dewey can do the same........ anyone?? anyone??? :)

 

Seriously, I honestly cannot fathom what I would do without the family and friends we have.  Even the friends/family we don't see often still radiate their love to us in various ways.  We never feel lost for love or prayers, and I pray that Calleigh always acknowledges that love from God as He shows it to her through her friends and family, among other ways. 

 

Today's prayer for Calleigh:  Lord, even as it may be redundant, I pray for my daughters health.  Please fill her lungs with beautiful air, chase away pollution and harmful bacteria so she may always know the beauty of a full breath in her lungs.  Please keep her pancreas clear with from blockage and help enzymes to digest her yummy formula and baby food.  I pray that she will KNOW you, not just know OF you Lord.  And thank you for the way her face lights up when I come near or when her daddy reaches to pick her up in the mornings.

 

PS.  In the future, I will try not to write these during lunch at work.  If anyone were to look at my desk right now they would see me in tears just thinking of my lovely precious Calleigh and the blessings in our lives. :)  lol

Sick Mommy=Not fun

Not only does my time with Calleigh seem short on normal days, but today I fought of nausea all day... Luckily she doesn't seem to notice because she loves to just play on her own.  But it did make trying to do her nebulizer and pats very hard.  She gets stronger every day fighting with me so without even my normal strength, she wins.  Hopefully that cough doesn't get worse because I can't muster the strength to hold her for long.  :(

Hopefully I get better tonight because I am looking forward to the weekend with her.

Today's other struggle is that she seems to no longer want as much formula.  At night I can get her to take a lot of baby food and a normal bottle, but during the day she won't take much baby food and has a horribly low oz bottle.  Hopefully it's just a phase since she is teething but we'll have to see.

Today's prayer for Calleigh:  Lord please watch over my baby girl.  Help her to have a good night of sleep, with beautiful baby dreams.  Be with her lungs and her pancreas, help them to function as they should so as to help her breath and grow as a little girl should.  Help her to feel the love that surrounds her from her mommy, her daddy, her family, and most of all her Lord.  Please pull her to you so that she may know you.

Starting Life....

For my first rough blog..........I love my daughter.  She is perfect. She is sweet.  She is loving.  She is beautiful.  She is a sweet child of God that deserves all of her dreams to come true.  She is a part of the dreams in my life that have come true.  I love her. :) 

I don't plan on posting TOO frequently. :)  I don't want to become annoying... lol  but I do want to share what life is like with this sweet little girl who has a lifelong struggle ahead of her.  

To briefly sum it up:  Cystic Fibrosis is a genetic disease that affects the lungs and pancreas.  Calleigh has to take enzymes to help her digest her food, and she does twice daily sessions with a nebulizer and "pitty pats."  Some day we hope that medication will progress so that she can have an easier time but for now we take things a day at a time. :)

Til next time!