By: Theresa

Theresa — Wed, 17 Nov 2010 21:48:21 +0000

You are constantly in my thoughts.

By: Summer Davis

Summer Davis — Mon, 15 Nov 2010 23:53:22 +0000

Glen,
I am always inspired after reading your blogs and in awe of the incredible amount strength that you continue to carry, and especially now. First let me say that I completely understand how you feel and the quality of life you want for Ella, and more importantly, what is not acceptable in terms of “quality of life, “which is exactly what I want for Mikyla and hopefully the same as any loving and dedicated parent would want for their child as well. Take heart in knowing that Ella knows you are and Alycia are there with her, daily, caring for her, reading and singing to her and she CAN feel all of the love you are pouring out to her very minute, and she knows that that no matter what her path is now, that she will never be on it alone, she will always be surrounded by unconditional and eternal love from you and Alycia.
I know very well myself that it is much easier to believe in things that are backed up by raw facts, percentages, lab results, scans, evidence from some scholarly article or words that come from people wearing white coats and badges with “MD” following their names. However, if I believed all of the statistics and “facts” that I have been handed over the pst few months about my child’s illness and predicted success rates, there is no way in hell I could go on every day with the same hope that I have chosen to have. No matter the odds, I refuse to stop believing. I am not a religious person, but I must continue to believe that miracles can happen, be it an act of God, the Universe, or simply a manifestation of my own power, thoughts and the energy brought forth by my own believing, that is, believing in only what I want, and turning off my own “don’t want” thoughts. If ever there was a time Glen, it is now, imagine and feel the feeling of what you want, as if you have it now. It’s not your job to know “how” this is going to happen or when, your only job is to believe and feel as though you have what you desire now.
I appreciated the part in your blog where you said that you and Alycia had decided that you wanted to help other people in need, other families facing this cruelty, and actually, Iv’e had this same feeling building up in me as well. Like you and Alycia, I am not the same person I was 6 months ago going about my daily ordinary and routine life. I am a forever changed person and the other night I was able to get out of the hospital an go to the Tim McGraw/Tug McGraw Benefit Concert for Brain Cancer and Traumatic Brain Injury, you may know of this incredible foundation that was started after Tim’s father passed away from his brain tumor to improve the quality of life for brain tumor patients and new advancements in drugs and a cure. The energy and passion I saw in these people was overwhelmingly contagious, it brought goose bumps to my skin, and If I hand’t really thought about it before, I felt at that moment, a new passion in myself to do something so much more meaningful to me than anything I ever could’ve envisioned myself doing years or months ago. I’m not sure what that is yet, but I do know I can’t go back to cardiac nursing, taking care of people who don’t care about themselves and continue on with their self destructive and harmful behaviors and habits that only land them back in the hospital again and again. To spend my time and energy caring for those who could give a shit about themselves is draining, frustrating, and is ultimately just futile. Its just not who I am anymore, nor was it what I truly wanted to be doing, although it was okay because at that time, as I didn’t know of anything else I wanted to be doing either. And, if I must return to it for reasons of maintaining medical insurance for my child, it won’t be for long. I have a new drive growing inside me to find ways to provide support and help families and children suffering from this disease, some how, some way during this life of mine and to find a cure damn it, so that other children don’t have to experience what ours are. If we had this life altering experience for no other reason than to make us into better human beings, than so be it.

By: Ken and Mary Sanders

Ken and Mary Sanders — Mon, 15 Nov 2010 05:46:17 +0000

Glen WOW what a HUGE amount to take in!!!!!! I am overwhelmed & I am only a person who met you briefly, so to be in your shoes right now must be very intense. We have been thinking of you & Ella daily since we met you and will continue, we consider it an honor to have met you & that you shared with us your thoughts. Thank you

By: Lori De Marco

Lori De Marco — Mon, 15 Nov 2010 03:48:23 +0000

You express yourself eloquently Glen. If there is a God and he has decided to take your daughter to him then no amount of prayer well change that. If there is no God and this is simply a matter of horrible cellular circumstances then no amount of scientific intervention will return your daughter to you. If, however, there is a chance for Ella, and science and technology can help her, then asking God to make you stronger through the process is acceptable yes? Whichever is the case I hope you will accept the love of your friends and family, whether it is prayer, or a phone call or a meal prepared for you, as the best they can do, the faith they can demonstrate and the hope they have for Ella. Peace.

Comments on: Back at the hospital

By: Theresa

By: Summer Davis

By: Ken and Mary Sanders

By: Lori De Marco