Thursday, October 20, 2011

wednesday, 10-19-2011

Everyday. You try to make it count. The big stuff, the little stuff and everything in-between. If you don't already know, Megan has always talked of not wanting to die before she had time to leave a legacy. It's not enough to be graceful, brave, full of life and healing...Megan wants to always be remembered and touch all of those who have touch her. Yes, that means you...doctors, nurses, techs, friends and family. She wants to impact, influence and inspire those she meets. She wants them to be courageous enough to do what they need to do to evolve in their own life's journey....whatever that may be.
So here is my story for today. While we were inpatient in the hospital a few weeks ago. Megan was asked if she would be willing to shave "Marty"s head to kick of a fund raiser for children's hospital. Megan's response, "Well, sure why not?....I'm already at the hospital." She flashes a big smile.
The day of the event, she is happy and humorous. We leave our hospital room and head down to the lobby where there are about 100 or so people waiting for Megan. We are introduced to all the people we need to. Of course there are cameras there ready to start taping. Megan gets started. Someone in the crowd shouts out to Megan asking her if she ever shaved a head before. She confidently responds, "Well, I used to shave dogs when I worked at Pet hard could it be?" the crowd breaks out in laughter! Above and beyond that, she agreed to be interviewed on tape so she could share her story with everyone or even just one person - that her story may help.
Today (for the second time since the event), Marty came to the hospital to visit Megan because she did inspire him. He told us a story of a large board meeting he had to attend. Executives thought it was a good idea to show the head shaving video of him and Megan. Once that was over, they asked Marty to give an impromptu speech regarding  it. He gave his story of how inspiring Megan is. Afterwards, it become totally quiet in the room. Marty was worried it fell on deaf ears. They excused the group so that just the executives finish the meeting. To Marty's surprise, executives and many people in the group approached him with an outstretched open arm....sometimes with both arms...tears in their eyes....INSPIRED! Megan, you inspire many people you never even meet!
Oh, this gets better. There is another fundraising board meeting this Friday. They asked Marty if they could show the tape again...and would he share Megan's story again. Marty decided to request one step further...he asked Megan if she would be willing to give a little speech and share her story inspire everyone at the meeting. I am SO proud of her...she said yes....not only is she touching people...she is creating her legacy....absolutely beautiful!

Friday, October 7, 2011

Thursday, 10/06/2011

        It is 11:15pm, I just crawled into bed. My head spinning....
Megan notices more and more neurological issues....I try my best to reassure her. I can't help but think, if that was any one of us, what could one possibly say to help ease our fears? I'm here, strong, calm and capable. Am I capable enough to find the right words to calm her fears? I just don't know....
Megan holds herself with such grace and humility. Even if I would say the wrong thing....she is so forgiving. I don't ever want to disappoint any one of my children. I do understand my role is not just to give Megan comfort and love....but to show Emily and Riley how to live through tragedy and get to the other side of it...find happiness again, laugh again. I also know words are not enough....I must lead by example. Our children look to us to be a role model as to how to handle various situations. I don't think surviving the loss of a sister was in the parent handbook that "they" gave me. All of this is a learn as you go sort of deal.
We all grieve differently. I continue to try to find ways to help my kids through this ordeal. Let's not help them through all the "regular stuff" in a teenager's life. Each child has different needs. So many different hats to wear as a single mom....I am constantly amazed that just when I feel like I'm going to break any second.....I hang on. I remind myself, "Everything always eventually gets done...just not in my time frame." Then, I see hope, looking me straight in the eye....please stay around me a little bit longer this time...
Tomorrow I'll pick up that big dead bird in my back yard... I just couldn't get to it today :)

Wednesday, October 5, 2011

Monday October 3, 2011

I woke up today....feeling all the  familiar, normal feelings. I'm so tired today....I wish I would have been able to sleep last night. Not sleeping has also become too familiar. "maybe today will be a better day.", I tell myself. I get up, take my vitamins, look in the freezer and take out some brats to make for dinner. I tell myself, this might be an easy day at the hospital.....but draining nonetheless. I'll keep dinner simple. My 17 year old reminds me of a meeting she has after school. Can I pick up my 14 year old from school? "if I get out of the hospital on time.", I reply. "we'll have to play it by ear."
Those two are off to school.
Maybe I'll feel better if I try to get in a quick 30min work-out on the treadmill. I try, after I feed the dog.
Wow! How tiring!....I lean on the handles, just trying to get through it. I look at the clock. I have about 45min to shower and get ready for the hospital. I better hurry! My 21 year old comes downstairs....I can already read the pain in her face...and her body. I try to reassure her that maybe it will be a quick day of platelets at the hospital. She smiles and looks at me with such a grace....
Our first stop is froedtert for radiation....we lucked out...the machine was up and running today. After radiation, we head to Children's hospital for an exam and platelets. Of course when we get there, they have already given away her room. We are now stuck in a room with no sink, paper towels, or cell phone signal. The nurse tries to access megan's port...not one, but five times, to no avail. Maybe it has flipped in her chest wall, which would require surgery to fix it. I shall remind you, because of the tumors in megan's lungs, general anesthesia is not normally done. The nurses have to put in an IV in order to give platelets and now she needs a X-ray to look at her port. I now have to scramble in and out of the room to try to get a cell signal to let my other kids know that the hospital is going to take longer. Could they work out the meeting/ride situation on there own? While I'm working on all this...the Drs are concerned with some of megan's neurological symptoms.....yes they now fear the cancer may be in her brain stem. Better to move sooner rather than later. Drs will set up MRI for tomorrow morning at 8am. Then radiation again....what a sad day at the hospital. But we still couldnt leave until we picked up megans new prescriptions. Of course there is an insurance issue with payment. I pay for it with money i dont have and tell myself, I'll worry about it tomorrow. We don't get home until after 5pm. I'm happy to see my other children made it home ok. I immediately start dinner. While we're eating, I try to explain what is going on to my other two children....
I am so tired. I help Megan carry her laundry basket downstairs to do some laundry. The tumors in her lungs make it harder to breathe. Tumors in her spine make it hard to lift. Tumors in her head make it harder to balance. I find Megan asleep on the ottoman. I take her and put her in my bed to get some rest. I finish washing her laundry and carry her basket upstairs to her room. I hope I'm tired enough to sleep tonight. Megan wakes up and I help her upstairs to her room. Making 3 more trips up and down the stairs for medicine, water, cell phone and other forgotten items.
It's now exhausted as I am, I can't fall asleep. Probably a good thing because at 2am, Megan comes downstairs to seek my heroism to kill a "really gross big bug" in her room....ah...the little victories!
By 3am, I finally start to doze off....if I'm lucky, I'll get about 3hrs of sleep. Have to get up bright and early to start the hospital stuff all over again......
Just a day in the life of a single mom with a child that has terminal cancer...