Never taking one single breath for granted.... enjoying the journey one day at a time!

Tuesday, June 18, 2013


Fear can be such a consuming thing... I try not to let it over power my life but once in a while it takes charge. Ever since Tiara was diagnosed with Cystic Fibrosis I have had so much fear. It makes me nervous to take her out, go to the doctor, worry shell get to much wind in her face etc. etc etc. This past week I realized a hard lesson.On Friday I spent the afternoon up at Primary Children's with Tiara. At her 2 month check up the pediatrician heard a murmur in her heart... I was FREAKING out to say the least. Our pediatrician being the amazing person she is calmed me down thankfully she has been our pediatrician since Daxton was born so she knows our history with Kael and is very understanding. She let me know it was most likely nothing but that shed hook us up with a specialist right away up at the hospital. So Friday came and up I went. The people up there are amazing. They got all her data and then ran a EKG. They checked her oxygen levels and asked me a zillion questions and then the doctor came in. He said her EKG looked good and she had passed all the questions we had answered. He listened to her heart and said it sounds to him like whats called a still murmur. This is very common in kids and they outgrow them as they get older. This was such a huge relief to hear. They will follow up with us in 6 months to re listen and as long as it sounds the same they wont need to do further testing or follow up. Sitting there at that hospital with her for this reason sent me back to the times with Kael. So many test, so much time always wondering never knowing for sure. I decided right then and there.... I cant live in fear. Cystic Fibrosis has come SO FAR in the past 20 years and is only getting more and more advanced. New medicine is being tested, new studies are being done Tiara has potential for an AMAZING LIFE and that's what I should expect. When I go to the clinic they say prepare for her to do everything normal kids do. She can dance, she can cheer, she can read, write, run play soccer what ever it is she wants to do. We may have challenges sometimes and she may get sick but we will take that as it comes. If I try to keep her in a bubble and "protect" her from what I think I can she will miss out on so much life. So I have decided to take it a day at a time not worry about the next day or the future and let this little girl enjoy life! I don't want to miss out on a single thing because I am  scared. So I am doing my best to shut the devil out shut out the fear and trust in god that things will be as they should! She is such a beautiful, happy baby you would never know anything is even wrong with her so I will soak up every minute, enjoy every milestone, every smile, kiss, hug, etc. This little girl is so strong she already rolled over for the first time yesterday. I can hardly believe it! I am so thankful for her life. She is amazing and brings such joy to our lives. Please pray with me that I can live in the moment and not worry about the future because this girl is going to live a long, healthy life!! I will continue to pray every day and just be thankful for the now and what we have. It doest mean the devil wont try to creep in but I will do my best to kick him out! They saying of one of my blog friends says it the best ... "come what may and love it." and that's just what I plan to do. So live in the now, hug your kids tight and let them know they are loved. Whats not to love about this beautiful, smiling, precious face??? 


Alesha said...

It really is all to love, she is adorable! I know the feeling though. I have to remind myself that there is very little I can do. Worry does not help anything. Still hard.

KW said...

I think worry and fear are my biggest challenge too. I will pray that you can live in the moment because I think we all need reminding of this. You are right though, she can do amazing things and we can't be the ones to stop that. What a precious, sweet girl she is.

Tesha Papik said...

oh my friend this brought tears to my eyes. You are such a good, strong mommy to all your kids. Fears are inevitable but what truth you spoke that we should live in the moment and enjoy it. I will be praying for you to have no fear and for sweet Tiara as well. Jesus has BIG plans for this little girls life!

Klizb said...

My daughter also had a Still's murmur when she was tiny. She is now almost 18 (next week!!) and has a very healthy heart. The way it was explained to us is that it was basically because she had less fatty tissue around the heart and abdomen and it was very benign. Nothing at all to worry about! Best of luck, lots of prayers, and virtual ((hugs)) to you!

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