I was talking to a friend the other night and we got to talking about the brevity of life. She asked me how it was that I did not feel afraid all the time that we might loose Kyleigh. I am human just like anyone else. To say that I have never thought about the fact that Ky could leave us is to tell an untruth. The night before her open heart surgery I had a MAJOR breakdown. Probably the worst of our entire two years with Ky. I had not hurt that way since the day of our 20 week ultrasound. Since then I have been on a journey to heal and strengthen myself and to learn to work through the grief that everyday brings to us as her parents. I have come far on this journey but I always have further to go.

I told my friend that I had come to resolution on the “death” issue and nothing could be truer than this statement. “I know that Kyleigh is here for a purpose. Her life is meant to accomplish a certain number of things and when her purpose is done… so is her life. There is nothing I can do to change that.” All of us have a purpose for our lives… we will never outlive our purpose. As soon as our divine purpose is fulfilled there is no need for us to remain here in our earthly bodies. Now that sounds very calloused to say but I followed the statement with this one:

“So instead of getting up and praying each day for healing for Ky or asking God to allow her to stay here with us… I pray simply that on this new day… that He would renew her purpose.” Selfishly that is praying for her to stay here and I know that but I realized tonight. You get what you pray for.

Instantly I realized that I had gotten exactly what I have prayed for. I prayed for peace and it has washed over me like a flood. I prayed that I would be able to share our story and help others… I continue to have the opportunity to do so. I prayed for Kyleigh’s purpose to be continued. Today she is once again having issues. Her cathing is all off… her belly is not right… she is still hot all over. I was so distraught today. I broke down thinking… if THIS is the best it gets for her… I am NOT ok with that. I want better for her. I don’t accept this. I have that “pit of my stomach, bottom of my heart” feeling… knowing that something is not right. Even without a UTI and with a clean KUB something is still just wrong. Everyone thinks I am crazy. I know they do… and its something that I cannot describe or explain. I just know that I know.

So Troy and I had the talk about how we should probably go see some more specialists. It has been recommended to us that we see an Endocrine specialist, nephrologist, GI, and we actually have never seen a geneticist. We have been so busy taking care of the things we can see now… we have no idea what else is going on inside her. Honestly… I don’t want to go anywhere else. I don’t want to KNOW anything else. I don’t want to FIND anything new. I don’t want to DEAL. My heart is torn and heavy yet through it all my prayer to sustain Ky’s purpose keeps flooding into my head. Tonight I can barely post through the heaving of my sorrow and the tears. I rarely cry in public. If I am forced I will leave and find a quiet place to be alone with myself. I just feel that no one else should be drug through the hell that I am experiencing. After Ky’s g-tube surgery I remember sitting in the PACU and the tears just came. I was unable to hold them back and in lieu of leaving my sedated princess I buried my face into her tiny wisps of hair. Those tears stung my face as they dripped onto her perfect warm head. I remember thinking … if I am quiet no one will notice. I never made a sound as I sat there but I could not avoid the eyes that I felt burning through me. Joe was there and must have noticed that I was silently sobbing because he asked me if I was okay… I could not even mutter a yes or no… I just sat there.. paralyzed with the weight of my decision. There comes a point when you can no longer hold back, when the room spins around you but you are stopped cold. That was a truly HARD surgery for me. We CHOSE that surgery for her. We CHOSE that pain for her. How can ANY parent choose something like that for their child. I realized today… when I pray for her to stay here with us… I choose this. I choose this for her, for myself and for our family. That is a burden that no one should ever have to carry. I cannot imagine how Heavenly Father must have felt when he chose the cross for his Son. What a powerful reminder of the love of a parent.

So many nights I find myself completely overtaken and overwhelmed. I find that I have no words so I write posts and delete them as I cannot find a way to finish them. I notice that the music playing while I am writing speaks to me in different ways on different days. So I have added a little jukebox to the right column you can hear what I was hearing as I poured over these words.

Tonight in our home it is still raining. More than two years later it is STILL raining. It must be appropriate than many days I feel as if we are drowning. Even today, though we are miles ahead of where we WERE, we are still not done. We will never be done. This is a storm that will NEVER be finished. This will never end for us. Just when I feel like my strength is almost gone… I am asked to AGAIN fight. When I am weaker than I have ever been I am told to pick myself up, dust off, and move on.

I watched the sky over Lexington today and thought of how much it is like our life. Beautiful sunshine peeking through with ominous black clouds looming just on the horizon… and raining. In the middle of the day, EVEN THOUGH the sun was shining bright… it was still raining. We must learn to live with the rain and enjoy its clean crisp cool breeze. To see the colors of the calm between the storms, to bask in the power of its lighting strikes and to enjoy the majesty of its booming thunder. And when it causes destruction we must learn how to pick up the pieces and make our life continue on. But how… I cannot do this. I am not strong enough. I am not wise enough. I am certainly not special. I am just a mom… trying to do the best she can for her perfectly imperfect princess.

I have asked before and I will ask, beg, plead again for your prayers. Pray for peace and for calm. Pray for divine healing and strength for our minds and bodies. Pray that we can continue to SEE the sunshine through the rain. Pray that our daughter is not in pain. Praying that she is not feeling the awful ramifications of her many issues. Pray for understanding and hope for our two boys as they have been forced on this journey with us. Pray for divine wisdom and clarity for our doctors. Pray for blessings on their families and peace in their homes as they spend so much time caring for us and for their other patients. Most of all…. Pray for grace like rain. We need it to open from the heavens and rain down on us.

Tonight… as you pray… listen to the songs on the jukebox and pray with all your hearts because our journey with its many peaks and valleys is far from over……….. in so many ways it has only just begun.

Popularity: 1% [?]