Brain injury introduces you to many other people that have also had the worst day of their life.
Is Alexis’s life difficult? Yes. Do we face challenges as a family because of her injury? Yes. Are we the only ones with these struggles? No. Do I realize that there are many parents who would give anything to get even a fraction of what Alexis got back? Yes.
I can only speak for myself and Alexis. I can not tell you what other families are feeling…
What I will say is that many times a week, I am touched by the words of other parents and families I have met that are struggling through the many emotions of having a sick or disabled child. Some of these people have lost their children.
The many voices of brain injury:
“Brain injuries mean medications. Phenobarbitol, Topamax and Felbamate for seizures. Omeprazole for reflux. Glycopyrrolate to decrease secretions so he’s not constantly choking on his own saliva. Clonazepam for anxiety. Pulmicort and albuterol for his lungs. Calcium, D3, folic acid and a multivitamin to supplement the nutrients he lacks with the peptamen junior with fiber formula. Pamidronate for bone density. Simethicone for tummy bubbles because he can’t burp. Culturelle, Dulcolax, Miralax, Milk of Magnesia, Senna and Eryped all to help him go potty.”
“His hemaglobins dropped to 6.7 so they’re giving blood. Yesterday he just got platelets. The way I understand it, he’s anemic but they can’t figure out why. So everything else is pushed to the back burner and this is what we’re most concerned about now. “
“Loneliness! One word that sticks out, even though we are surrounded by family and friends, we don’t quite fit in anymore! Most people’s homes are not handicap accessible, and a lot of the activities that we used to do like camping, vacationing and social events are either not wheelchair friendly or unsafe after brain injury.”
“After a long day and many prayers said by many (Thank you!), He is resting in his room. The surgeon said he severed an average amount of nerves. Many are hopeful for his outcome to be a success! Our goal is reduce or even eliminate the tone in his leg muscles and maybe even his arms.”
“They say nothing showed up on the MRI, but his shunt blocks a large portion of his brain so I say he did have a small stroke. There is also more narrowing of the vessels on the left side which they have already done the bypass on so I don’t think there is anything more that can be done. “
“When you go to The dermatologist to have skin cancer burned off …”
“Heading in for surgery. It may get more routine, but it doesn’t get any easier.”
“She got too far ahead of me and caught the edge of the sidewalk today and did a complete face plant into the concrete with her walker.”
“I am not here to sugar coat having a child with cancer, disabilities, and dying. I am here to hold your hand and walk through hell with you and be an inspiration and give you tools to survive even the greatest of losses.”
“He just might ride a regular bicycle one of these days. This sounds simple to the average person, but that’s a lot of body parts doing different things and that’s a lot for an injured brain to orchestrate.”
“If you don’t have an advocate to fight for every single part of this recovery you are screwed! I will continue to fight for these brave soldiers until my dying day because what they face every day to just get up in the morning takes more courage than most people have.”
“Four years ago our path changed dramatically. Four years ago we almost lost one amazing part of our family. We heard word no parents wants to hear and yet today I’m blessed to hold and snuggle my little girl. “
“We were, however, reminded how deep her injury is in her basal ganglia, and what this could mean for her one day. We choose to hang on his words of hope for all that she has to gain from whatever opportunities we present to her as she continues to grow, and he encouraged us with his own suggestions to enrich her life.”
“It’s not the life I had planned for myself 11 years ago but it’s the life that has been given to me.”
“Love. Admire. Nurture. Everyday.”