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. 

One to remember!

Today is one of those days I want to remember. Not because it was a holiday or any other special event, but just because there were so many moments of pure joy as I watched my little girl play. The places her imagination takes her and the things she says and does just amaze me. I love seeing her growing mind try to figure out and respond to the world around her.

Over the past few months, her behavior has been rather difficult, if I'm honest. She hasn't accepted "no's" very well (like most 3 year olds) and has been so dramatic when things haven't gone her way. I have tried to keep my patience (failing miserably at times) and be consistent with what I will and will not allow. This just feels like one of those pivotal weeks where I see her maturing in small little ways. I can't put my finger on it but it's like things are sinking in. She is being more respectful by saying "yes ma'am" and "yes sir" when asked to do something she doesn't want to do. There may be a huff and an eye roll (yes, that is already starting) but she isn't screaming about it - today at least. :)  She is asking "may I be excused" before she gets down for dinner. And today she even wanted to order her drink at the coffee shop all by herself. She even asked me to go sit down! I asked her how she was going to pay for it and she just said "I dun know".

So we started our day with a trip to the dentist. She has been really nervous about this. And a couple of weeks ago, she totally melted down when I told her we were going to the dentist the next day. (She ended up having a cold, so we had a to cancel, which I'm thankful for). This morning she asked me, "mommy, why do I have to lay down at the dentist?" and "why do they wear that mask?' It was one of those "Ah ha" moments as I realized why she gets so scared. A little explanation eased those anxieties and she did not shed a tear!  She did so awesome letting the hygienist brush her teeth. She got a little nervous again when the dentist came in wearing the lighted glasses and asked what those were for. But again, we explained and I got her to sit back in my lap for the next part of the exam and she didn't fuss at all. She was obviously apprehensive but kept it together and was really brave. I was so proud of her! 

We got home for a little play time before lunch, nap, and dance. And today's imaginative play consisted of her HAVING a baby! MY baby sister she informed me. She stuffed the baby doll in her belly and went off to deliver it. She even made her own hospital bed and a "table" for the baby. (But it had to be a soft table!) This happened on more than one occasion today. She later told her daddy her baby was drinking milk from her boobie! Then she changed her mind and said the milk was coming from her belly button. 

At dance, her teacher told me she is doing so well! About a month ago, she wasn't always following her teachers dance but she is definitely getting more into it and is more confident in trying out her "dance moves." The first thing she asks me when I pick her up is "did you look in the window an clap at me?" Children so desire their parents approval and to know their parents are proud of them! And I am definitely that! Oh, how I love this child! 

Post-dance coffee shop habit. She wanted to order by herself. Chocolate milk please... 

We also added a few ornaments to her first personal Christmas tree. And I just think it is adorable! We will be working on more ornaments to add to it.

And during chest PT, she drew this wonderful picture of the two of us. I guess she ran out of room for her daddy! :O I love how I have such long, fingers, and clothes (the scribbles over my extremities) so I "wouldn't be naked." I absolutely love it and will surely treasure this!
 

And we made banana pops to round out the evening! She picked this out at the store and was so excited to make them. So it was our after dinner treat and so yummy!

Baby crazy!

Kelsie is obsessed with me having a REAL baby these days...
Kelsie: "Mommy, can you have a real baby girl now?"
Me: "No, not now sweetie"
Kelsie: "Why? It's not that hard to have a baby!"
Me (laughing inside thinking if you only knew): "Oh really?"
Kelsie: "No, its not. And I've been doing a good job at waiting."
(if only it were that easy)
EVERY day is more of the same..
"Mommy, is your belly pregnant now?", Me: "NO its not."
"Mommy, I really want a real baby girl just like me!"
"Mommy, is it Halloween?" Me: "Yes", Kelsie: "And then is it Thanksgiving and then Christmas and THEN we can have a real baby girl?"
(Where does she get this stuff?) "No, we won't have a new baby at Christmas but we can keep praying."
"Mommy, can you put my baby (doll) in your belly?" (I do and she walks me to the couch) "Now, go to the hospital and have the baby."
Her daily prayer: "Dear God, please bring me a real baby girl in my mommy's tummy."
(On the phone with cousin Ava this morning): "My mommy's belly is pregnant with a baby girl." Me gasping, "NO its not!"
So you all have been warned...if Kelsie tells you we are having a baby, it's NOT TRUE...it's just her imagination, undying love for babies, and wishful thinking! #alldayeveryday #keepthefaithmychild One day, maybe her dream will come true...

I keep thinking I must be putting this idea in her head but I really think she is just fixated on it. She understands that other friends have siblings and she doesn't understand why it isn't so easy to just make that happen. She also knows we would like another baby and we have talked about praying for God to bless us with a baby girl OR baby boy. She however, has decided she only wants a baby girl!

Only God knows what will come. He is faithful and He is God and I trust in His timing. And I will keep trying to instill that patience in waiting for the Lord in my sweet child.

She makes me do this ALOT!! I can not wait to see the joy in this child's heart if/when we do have another. 

3 month recap!

I was reminded by a dear friend that I haven't posted since July! Thank you Shirley for encouraging me to keep this up! ;) I guess it really has been over 3 months! Oh how I wish I still took the time to journal our daily happenings but somehow life gets in the way all too often.

So what have we been doing since July? So much! We went to the beach, Kelsie started preschool and dance, we went to DISNEY WORLD, we have taken many fun trips, and much much more. It has been a fun-filled season and I am grateful for every memory!

Kelsie is almost 4 years old now! So hard to believe. It's almost like I see it happening right before my eyes. That growing up thing. There are days that I just wish I could time travel back to different seasons of the infant or toddler years that have now gone by. Other days I am totally relishing in the present, thinking, I wish she'd stay like this forever. And there are other days where she absolutely drives me crazy and I just want to send her to grandmas! (honesty right there) I even think ahead and look forward to seeing who she grows up to be. But regardless, life moves forward. No going back, no doing things differently, no chance to make memories you missed out on. So I try to remind myself of that. Be in the present and enjoy the moments in front of you, both the sweet and the not-so-glamorous. Soak them in one day at a time. Make the most of the day in front and spend time being truly present with your child, remembering every day that they are only little once. Whether you decide to have a pretend picnic, take an impromptu trip to the zoo, chalk the driveway, play hide and seek around the living room, turn into a tickle monster, make a playhouse out of a cardboard box, read the same story 20 times, rock the baby doll because she wants you to, or just sit on the couch and snuggle in front of the same TV episode you've seen over and over...do it with joy and enthusiasm. Because these are the things that mean the most to that precious little child of yours. Forget about the to-do list that you never even had time to write, and just relax. 

 Here are some pictures from our wonderful weekend trip to Ocean Isle Beach. We had such a wonderful time! Kelsie was totally in her element. She was nervous of the ocean at first but once she embraced it, she had a blast!! It was a place where we could just sit, relax, and watch her run around the beach. She was filled with laughter as the waves crashed over her and I just couldn't get enough watching her face light up with pure joy. No toys, no TV, no distractions...just us with time to play and bond and enjoy God's ocean.

 

 

 

 

 

First day of preschool! She is going 2 days a week (Tues/Thurs) at Christ Church Preschool and we absolutely love it! Such a great place!

 

She started her first dance class. I was thrilled to see a new dance studio open in downtown Pittsboro, 7 Dance Centre. She is loving it!

 

This is random but I saw it in my list of photos for August so I thought I'd add it in because it was a fun memory. I let her play in the rain one day...just because she had been asking to wear her rain gear and was always disappointed when it stopped raining, so one day it started pouring and I thought, why not!?

 

 

She is now a member of Carolina Kids Club and got to go to a special meet and greet with the football team! We had a great time with friends and she even got to meet Ramses.

 

 

 

And I will have to stop for now. As I was going through my photo folders I realized just how many fun things we have done this summer! I will have to be better at sharing! Maybe one day I will get caught up. At least be on the lookout for a separate post about DISNEY! Until later....