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Showing posts from March, 2014

who?

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I get a strange feeling sometimes as I meet people..... In particular, the people who, after just meeting me say this...."I feel like I already know you." When I started this blog a few years ago, it was mostly just so I had an outlet.....a place to go, to vent......to write. I never thought that people would read. I never thought that SO many people would read. As the years have gone by, and our story has told itself to me......I have tried to tell it to others. Always trying to showcase the highs.....and the lows. Pounding at this key board through tears....... typing quickly with excitement...... and hitting the publish button even when I didn't feel as though anyone would care..... I hope that I have always shared my faith.... that God has always been given the glory for things accomplished......hurdles jumped..... I pray that through me, you are really seeing what He can and is  doing..... In just the past week, during errands and other encounte

Rhythm

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There are moments in life when I just say to myself......."What in the heck is wrong with you?"  I have been having so many of those moments here lately that I am embarrassed to admit it..... Moments where I am staring at my newly chubby five year old boy and thinking about how thankful I am to have him next to me.....but struggling to smile anyway. Moments that are filled with so much guilt and loneliness......and all out despair...... moments of feeling as though there is not one other person in this entire world who could understand...... The guilt is the hardest....... because I should be happy..... and I am...... but not all the time...... I remember that Joy is always inside of me no matter how I feel..... That truth and love of God keep me grounded in security.....but I am still human. and humans have to deal with feelings..... I cannot keep my footing at the mountain top every second of every day. although I do try...... the valley's find me.

hang on....

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Sometimes in life you just don't have things figured out..... even when  you are completely certain that you should. By now I should be used to being home. I should have mastered the daily routine of life at this point.... However, I am not.... I have not. I cannot seem to remember what average  means. What having normal  life feels like. How to be a mother.... at home..... Getting up in the morning is hard in and of itself..... knowing that the list of things that need to be done is long.... and that the number of which will be checked off.....is small. We are contained with in our home most every moment of our day....Parklen, Phinlynn and myself.  Inside. Parklen spent much of spring break this past week watching Paysen play outside through the window.....all of us knowing how badly he would love to join him, but how capable he is of comprehending the dangers..... His knowledge of medical things, terms, scenarios, consequences.... far surpasses most

Right on track and speeding forward.....

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We left for Denver yesterday....all of us. The big boys are on spring break, and the rest of us five feel grateful for the added company..... always a good view from the passenger seat when this is your driver :) Sitting in the passenger seat felt better than I can describe..... its been a while since I have been in that position...... Its been a long time since my eyes could search the horizon.....noticing the small things along the route.......having both hands free to soothe a baby, hand a snack......relax.... We took our time..... big time. Added a couple hours onto the already long ride, making stops and disregarding the hustle........ In the hospital today, we waited for the slow flow of the immune boosting drug to complete its journey.....through the long tubing and into Parklen's chest port.... a long hospital day. We spoke with nurses and doctors.... catching up on the people we've missed. Exam looked good, Labs looked even bett

The first chapter.... after

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Being a mother of a sick child leads to many things..... It leads to a life filled with worry, care giving and sleepless nights that reach far beyond the typical realm of motherhood..... Being a caregiver to a special needs child is the hardest yet most rewarding position I have ever filled. I have woken up every day for the past 5+ years with a mission..... a mission and a knowledge that someone else was depending on me for their survival. more than the basic needs that us as humans require.... A constant awareness that his  well being depended on my  actions..... The pressure of remembering every single medicine,  every proper way to perform his countless treatments..... remembering how to operate the machines that helped him breathe.... Keeping my eyes open a little wider than normal for any subtle changes.... A very difficult and very overlooked portion of having a sick child is what happens to you.... as a mother......as a woman. To prevent