A month in, but a lifetime ahead

Here we are, a month into having 2 children with CF. A month in, but a lifetime of dealing with this lies ahead. It's chronic. It's there every single day. My girls will never get a break from taking medicine or breathing treatments. I'm admittedly still overwhelmed most days. Giving more than 20 doses of medicine per day between the two of them, fitting in the chest PT and breathing treatments every day, keeping the equipment sterilized after every use, assessing and managing the symptoms daily, going to the appointments, frequent trips to the pharmacy, communicating with the doctors, etc., and doing all of this on top of caring for a newborn, a 4 year old, and a household. I am tired. It's double the work, double the meds, double the emotions, double the doctors visits and trips to the pharmacy. But this is the hand I've been given and though I don't understand it and wish SO badly I could change it, I will press on and do everything I can do for my girls. 

No matter how much work it is, how many doses of medicine I have to give in one day, or how physically/mentally/emotionally draining it is, I will do whatever it takes to keep them healthy. 

And on days when I feel weak and like I can't go on, I pray God will carry me through and give me the strength I need. One thing I know for sure, as long as I have breath, I will be by their sides holding their hands, helping them tackle this disease. 

 My sister sent me this song the night we found out and its still just what I need to hear. 

Just be Held - Casting Crowns

http://youtu.be/tIZitK6_IMQ

These words echo in my head daily, "hold it all together, everyone needs you strong...life hits you out of nowhere and barely leaves you holding on." But "there's freedom in surrender, lay it down and just let go". 

"Cause when you're on your knees and answers seem so far away, you're not alone, stop holding on, and just be held." 

Devastating news

With tears of sorrow pouring down my face, I share our devastating news. Yesterday we found out that our sweet Mackenzie has Cystic Fibrosis too. I am shocked beyond belief. I whole heartedly believed after so many faithful prayers and careful consideration of our options, that she would not be affected. I am so very angry, so sad, and utterly heartbroken! I always knew there was a 1 in 4 chance but my faith was too great to ever believe it would happen again. It was so much easier to accept and embrace as a possibility before it was a burden cast on this sweet, innocent face in front of me. Now my heart cries out with so many questions, and so much hurt and disappointment. I don't even know how I am going to make it through this or manage all it requires to take care of TWO children with this disease. But my precious girls depend on me so, somehow, I have to find a way. This is even harder than the first time around. Please pray for us and 

pray for a cure. 

First loose tooth!

And just like that my 4 year old has lost her first tooth! She tells me she fell and hit her mouth on the wall at church which knocked it loose sooner than would be expected. Since it was a traumatic event, dentist wanted to check things out and went ahead and pulled it (it was only hanging by a thread anyway). Apparently the one next to it will be soon to follow! 😔 Makes me feel a little sad to see those baby teeth go (I'll blame it on the hormones)! She did excellent at the dentist though! And is SO proud of her missing tooth!

Another baby girl on the way!

I have not updated my blog in quite some time. But we are expecting our 2nd child, another sweet baby girl. Her name is Mackenzie Grace. I am 36 weeks today! I have been doing well and baby has been thriving. She is extremely active and has some impressive acrobatics going on inside my tummy. Daily we sit and stare at my belly mesmerized by her movements that stick out and roll around under my skin! Big sister Kelsie is so excited and already talks about how much she loves her sister! She thanks God for her and tonight her prayer went something like this : "God thank you for Mackenzie Grace and for putting her in Mommy's tummy and making her a girl". She has begun telling me lately, "mommy, I got just what I wanted...I got that baby girl in your tummy and that was just what I wanted and God gave her to us." She did pray for a baby sister long before I got pregnant, so I believe this is a great example of God's answer to prayer. 

As we draw closer, I'm reminded of God's faithfulness and goodness. I'm reminded where we were a year ago and how discouraged we felt. We waited a long time and went through a lot to get to this point. Some know our story and many likely do not, but this decision - this child - is the result of many fervent prayers and a great leap of faith. (I'll share briefly because I believe this is God's work in us and His story to share.) After much prayerful consideration and pursuit of other options, this child was ultimately conceived naturally with the knowledge that like her sister, she too, may have Cystic Fibrosis. We still do not know the answer to that question and won't know until after she is born. We pray desperately that she does not but if she does, I know God will protect her, and He will hold us up and carry us through. And either way, I know God has a great plan and purpose for her life! We serve a good and Almighty God and we put all of our trust in Him. We know He is faithful and He hears our cries. Please pray with us for this precious child of ours!

 

Savoring this last month of uninterrupted time with Kelsie as an only child! Pool time is our favorite this summer! 

8/17/15

My Valentine

I don't have enough words in my head to express the magnitude of what I feel in my heart for this sweet girl! 💗 I never knew a bond could be so strong! We exchange more "I love you"s and kisses in a day than I ever expected. Nothing could have ever prepared me for this type of love. It's the greatest joy of my life!

 We had such a wonderful day just being together running errands, and sharing yummy Valentine sweets! 

Words of my preschooler

I laid out red pants for Kelsie to wear with her ladybug shirt. She promptly told me, with hands on her hips, "I AM NOT wearing those red pants! They are red like the Wolfpack!" - she has definitely made her choice! She even said, I want to wear blue ones! My little Tarheel. 

"My husband is named daddy"

I was telling her tucking her into bed and I said "Goodnight, love you sugar."  She said "Daddy calls me sugar. Why do you call me sugar?" I said, "because you're sweet like sugar." She said "ohhh, [laughter...] you're going to bake me into a cake."  So funny she made that connection. 

There have been several more funny things said this week that I have forgotten to write down (as usual). Maybe they will come back to me. 

So much sweetness!

Sometimes, it's just those simple, sweet, every day moments, like sitting on the floor playing with stickers, that remind me how blessed I am to be her momma! 

Kelsie is just the sweetest thing. She is so caring and affectionate and has such a big heart. Almost 4. Although today she told me she is still 3 1/2 but will be 20 and a half at her birthday in February.  😉Sometimes she acts like it! 

Oh how I wish I could bottle up all the cute expressions, smiles, giggles, belly laughs, "I love you mommy"'s and the sweet and "grown up" things she says and replay them once she's grown out of this stage.

 Right now, I get to experience it every day. But one day, it will be different. This highly imaginative, inquisitive, cheerful,  tender stage will be over. Another stage will appear and I know I will love her just as much then as I do now. There will be new things that make me in awe over her and a newness of knowledge filling her mind. The same tight bond we share now will be just as strong. But the 3 year old Kelsie will be no more. It's kind of sad thinking of how these stages pass by so quickly when children are young. It's such a magical time full of so many hugs, kisses, cuddles, and joyful excitement over everything. I'm certainly not trying to mourn the loss before it's even over; but am just aware that its fleeting. So I try (ok I do) to take A LOT of pictures and videos. I don't write things down very often anymore though which I feel I may regret one day. By the end of today, I can't even recall all the funny things she said but I know they made me smile. And feel thankful for her. SO thankful. I hug and kiss her countless times in a day and she does the same to me. I am soaking her in, enjoying her, and loving her well every single day. One of the sweet things she said tonight.... I heard her randomly tell her daddy, "I love my mommy, she's so beautiful!" Made me melt! 

Thank you God for this daily journey through the amazing life of a child. Your child that you entrusted to me. She is the greatest gift I have ever received. I promise to treasure her always.