I took a break from the blog after my last post. I'm still tired but have been able to get out of bed a little easier each morning and back into some old routines. A couple weeks ago, I was cleaning my cell phone and when I reached to put it back in the case, I noticed a message was inscribed on the inside of the case. It said "have courage." I never realized the message was there despite taking it off usually on a weekly basis. It made me wonder about the many times in which I was not courageous and why this was so. What makes us lack courage? What are we frightened about? For me, often times it is the mere possibility of conflict that usually gets in the way.
Grace lived every day with every ounce of courage she had. Despite the constant seizures, insufficient breathing, oral challenges, and her overall severe developmental delays, she thrived during those short three months because she was not scared. Children are so courageous as they are not yet tainted by the toils and trauma that life brings to all of us. Despite being an innocent victim, Grace exhibited more courage than I ever have seen, just her will to live.
Because of her, we have been so fortunate to witness many acts of courage over these past weeks. Someone had the courage to leave us an anonymous gift of a Christmas Jar, which truly embodied the spirit of the season. Another person had the courage to email us supportive words as someone who had also lost a daughter to Grace's same rare condition. Her daughter passed away a few years ago so I can only imagine what types of emotions must have come flooding back to her when reading about Grace. Small acts of courage which made a such a huge impact on both Brien and myself.
So, for Grace, I am now going to start working on being more courageous in whatever small ways that I can handle. Being blessed with a career that I love and the wonderful interactions we have with so many families on a daily basis make each day worthwhile. Not to mention our wonderful, flexible, and supportive employees. I have to be more courageous in going the extra mile for all of our families and employees. I have to be more courageous in going the extra mile for myself and for my wonderful husband.
I'm starting by focusing on my health during this last month of the year. After many years of putting off some minor surgery, I am finally going to take care of the problem once and for all. The chapter needs to be closed and I need to have courage to close it. I am hopeful that having this courage will be the first step to a much better new year. Grace would have wanted it that way. She would have wanted you to have courage too for whatever life's challenges are brought to your new year. Please share with us and Grace your stories of courage.
A little over a month ago we noticed my daughter was limping, she’s always walked funny so we weren’t too concerned at first, but as it got worse we contacted her pediatrician. I figured his response would be something minor like possibly the shoes she was wearing (she picks out her shoes every day and tends to choose the same ones), but his response wasn’t as calm as I imagined and we had an appointment the next day. Turns out limping in a child, especially one as young as her (she will be 2 in February) is quite concerning and can be a sign of some serious medical issues, Leukemia being one of them. Our doctor immediately sent us for x-rays and labs and my normally calm pediatrician who is always so good at calming any fear I have was suddenly not so calm. Luckily it wasn’t anything as serious as Leukemia, but she has been diagnosed with JRA (juvenile rheumatoid arthritis). At first her doctor was positive saying that a lot of cases tend to be one flair up that clears up and may never show up again. After 3 weeks on medication, it just got worse and we were referred to a Pediatric Rheumatologist who told us it was affecting both hips, both knees and her left ankle, we thought it was only in her right knee…because there are no tests for severity of JRA, it’s a wait and see kind of thing, she was prescribed a new med and we left the doctor’s office with a large bottle of medication, a referral for lab/urine tests (which will have to be every 6 weeks), a referral for an eye exam and a follow up appointment in 6 weeks. The eye appointment was on the 23rd and currently her eyes are okay, but we found out that inflammation of the eye can be quite serious if not caught (a person could lose their eye sight or eye), so because of this, she will have to have eye exams every 3-4 months. As of today, it’s been 3 weeks on the medication and it’s not helping in the least, and there won’t be any changes made to it until she’s been on it for 6 weeks, which is a bit frustrating. And of course, the weather is of no help. Most mornings it’s so hard for her to walk, she doesn’t even try and if she does she has to hold on to the wall or every piece of furniture in sight. It breaks my heart to watch…althou from the looks of it, it hurts me a lot more than her, she limps, but as best she can, as soon as her joints loosen up enough to let her, she will take off running.
ReplyDeleteI just want you to know that thru this whole thing, I remember Grace. And as much as I don’t know what the future holds for Bevin’s diagnosis (once the weather clears up, it’s possible her JRA could as well and may never come back, or it may never go away) I know that I am lucky that it’s JRA and not something more serious. And this post reminds me that no matter how scary these appointments may be (because they always tell you the worst scenario) I have to have courage, not just for me, but for her. And to see how strong you have both been makes me know that I can be strong for something like this as well.
Thank you.