Do As I Say….

“Do as I say, not as I do.”  I didn’t want to be one of those people… and still don’t! And that is the main reason I was missing in action here for so long.



One of the things that I have always preached, is that you have to prioritize in your life. Its not as easy as it sounds, because after the prioritizing is done, the hard stuff starts. That involves  letting go of the things that are taking too much of your time, cutting out the things that are adding too much stress and not providing enough return. It can also include curtailing the activities that you want to do in place of the ones that you have to do. Hey, no one ever said being a grown up was fun, right?  This is good advice for anyone, but especially from those who have chronically ill children. Time is a valuable commodity, and more times than not, there just isn’t enough of it to go around. The problem is that we are resistant, and want so much to retain the status quo, that it is hard to let go of the things that we should.

The reality is a whole different situation though. If you’ve gone from a “normal” everyday life to a journey with JA, you know exactly what I mean. Time that used to be spent for a leisurely lunch now is used for commuting to a doctor’s appointment so your child will miss as little school as possible. Time that you used to spend chatting on the phone with a friend now is filled with speaking with your insurance rep, pharmacy or phone nurse. For some, things can be even more extreme, even trading in work outside the home for becoming a full time caregiver.  Taking care of a chronically ill child is very time intensive, even if your child is doing well. There are doctor’s appointments to schedule and coordinate with labs and other specialists. There are insurance claims to dispute, and EOBs to reconcile.  There are medications that must be administered like clockwork in order to keep them from getting sicker again. There are only so many hours in a day, and when you have to fill them with other things that require your attention, something has to give. When you finally find the balance between them, VOILA!  There is your “new normal.”

When Grant got sick in 2010, we had a crash course in “new normal.” We went from living a typical suburban life, filled with school, sports and friends to one that was happening mostly inside a doctors office, lab or hospital suite. It was an adjustment, to say the least. It took almost 2.5 years to get our “old” lives back, and I believe we only retained our sanity because we worked hard to embrace the “new normal,” find the silver linings, and be realistic in our expectations.  We had had to get creative, since we just couldn’t go on the way we did previously. Facebook chats had to substitute for face-to-face interactions with my girlfriends, and reading for pleasure? pfft. That was traded for sleep, anytime I could get it!  Eventually things settled down, and we got into our new groove.  We were able to appreciate where we were and what we were doing at the time. All of it.. the good, the bad and the ugly. (seriously, even the bad and the ugly!  Read more about that here and here) In 2012, we had a few health issues with my younger son, not to be outdone by his older brother! He was also diagnosed with Juvenile arthritis, but at least we entered into his journey armed with some experience. We made a few more modifications, but for the most part, our “new normal” life kept moving on.  But like it always does, as soon as we got comfortable, life threw us a few more curve balls, and we had to start all over again.

In late 2013, I had to file for divorce. I won’t air our dirty laundry here, but I will say that the course of events leading to this not only rocked my world, but affected my kids even worse. For a while I tried to keep up with all my AF volunteer work (I was still serving on committees, attending events, and speaking on behalf of the organization) writing for the blogs ( I was guest posting, writing here, as well as a  successful column for Everyday Health )  while I added the NEW responsibilities of filing motions, appearing in court, producing legal documents and statements. I also had to make time for more counseling sessions (times three!) and did I mention we were homeschooling at the time?  Something had to give. As much as I hated to do it, my writing had to go. There weren’t enough hours in the day, it did not supply an income, and bottom line, my kids really needed me to be present, not with my nose in the computer. It was a hard and emotional decision for me, because I feel as though writing has been a way for me to help others and raise awareness. My last column with Everyday health had over 75,000 hits in the first couple days!  I had worked hard to build a following and provide quality content, so I felt like I was letting my readers down, and letting myself down too. Even though it was;t about JA this time, my kids needed me worse, and my obligations were immediate and pressing.  In April of 2014, I had to hang it up, at least for a while.

2015 is a new year. I’m not done with the divorce or its emotional fallout for the three of us, but we are all doing better, and an end is in sight. We have made a cross country move, and the kids are back in school, FULL TIME!! While Evan has had his ups and downs with JA and other related issues, they are manageable. Grant appears to be in non-medicated remission (join me in knocking on wood and holding my breath until we reach that 6 month mark in March.) so things are settling back down again. That means I can get back to some of the things I had to put on the back burner. It also means that if you hung in there and came back with me, that you can trust the advice I give here. I’m not one of those “do as I say… not as I do,” people, and my recent absence proves it. You can feel comfortable to do as I say because I do it too!

If you are new to us, I hope you take a few minutes to look through the old posts, and subscribe to the new ones. If you are an old friend, welcome back. I hope you all can benefit from our experiences, and share your own. If you haven’t subscribed yet, it only takes a minute (see the sidebar to the right to sign up) and I NEVER sell or give away your email! Now, go “do as I say,” 🙂






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