Today was a defeating day. Today we were told once again Kylie was being admitted into the PICU. Do we ever get a break? I am so tired of her freedom getting ripped out from under her. It just isnt fair. Shes becoming so scared. If you touch her without her seeing you first, she jumps and cries. My daughter lives in fear. Its just isnt fair. I used to wish she never got cancer, now I just wish she could have a normal cancer life like most other kids. Not one thing that shes had to endure has gone smoothly. It just isnt fair. Shes walking down this dirt road full of holes, rocks, snakes, anything and everything that can cause her to tumble and fall. Today Kylies head started leaking again. They completely redid the whole incision with stitches and derma bond (glue). Not sure this is going to work because her skin is just so thin, but we are praying it does. If it doesnt then they will put in a shunt. Thats why weve been admitted. They are observing her and if it leaks, straight to surgery she goes. Today, I was feeling weak. Today, I started questioning God about what was happening to my girl. Its so easy to say, everything happens for a reason, which yes, most the time I believe it does. Kylie would not be here if it werent for all these big things that have happened to her because each of these bad things were followed with great things. But then its these little things that keep happening that make me start questioning. What is the purpose of all these little set backs? Im trying to find an answer or reason for them all. Why? Because it just isnt fair! Life isnt fair and sometimes it really sucks. Today, I wasnt feeling myself. My tank is running on empty and my faith is looking hazy. I always write my posts on the notepad app and today, as I was going to write my post, I scrolled through my notepad and came across a post I had made on June 7,14. It reminded me of all the things that started to become hazy. It reminded me of everything weve overcome. It reminded me of His promises. That if we stay faithful through the trials our reward in the end will be nothing short of miraculous. Heres my post from June 7, 2014 Finding strength through Gods promises...No matter what life throws your way, you must be confident in knowing he is using that obstacle to strengthen your faith in him and believing in his promises that with him you can do all things. Every single day we face this challenge with Kylie. From infections, electrolyte imbalance, swelling, vomiting, weak bones and muscles, you name it, but it is in our trust and faith that we are able to stand by his promises that we can and will get through it all. Does that mean that our faith is never shaken or weakened? No. There are moments in our days when life seems too hard, that the devil is using all his might to convince us other wise. We cry and we get angry, but at the end of the day it is the surrendering of our souls, the tears that refresh us to be able to open our hearts even bigger to all his promises. A relationship with God is not easy. The devil is strong and manipulating. The stronger your faith the more angry the devil becomes, the more he tries to bring you down. Weve experienced this more than we can even count. But tonight I lay here with so much hope... Hope in his promises. Hope in the strength he has given Kylie. Shes had 3 major life threatening infections/viruses that docs didnt think she would recover from, weve been put in an isolation room because they thought she was going to die and wanted to give us privacy, weve been told we needed to think about giving up and stopping treatment that our precious baby girl wouldnt be able to handle much more, but look at her today. Today she played for 30 minutes with music therapy, she rode around in her stroller, and spent two hours in the playroom. That is Gods strength running through her tiny body. Cancer is not easy. It will challenge every part of your soul and every ounce of your being. How do we stay so strong to keep fighting? Its those promises I see him working everyday through Kylie. That is my definition of Kylie Strong. Gods strength through her. And everyday I strive to be Kylie Strong.
Posted on: Mon, 26 Jan 2015 05:52:36 +0000
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