One of the hardest hurdles to cross on our journey through Greta’s ADEM experience is acceptance. I’ve learned how to say and spell Acute Disseminated Encephalomyelits, but learning to accept all it has done to our sweet girl is another matter.
Standardized test scores this year show an average of a 20 point drop from her scores the year before. I thought the doctors were originally a bit crazy or paranoid for wanting to monitor Greta for 5 years after the initial diagnosis. Now I understand why. The brain lesions are shrinking, each MRI is confirming that. No more are forming, for which we are ever grateful! But the fact of the matter is that damage was done.
So now we find ourselves moving past the urgent of getting back Greta’s eyesight in her left eye, to helping her cope with new realities. It isn’t easy. She is fairly resilient. I’m afraid it is her parents that are struggling with how to accept that things will never be exactly as they were before. It is going to require dedication and purpose on our parts to go through this with her, keep track of crazy things and report them to the doctors and keep up on forums with other parents and see how we can encourage each other.
Denying that there hasn’t been any change in Greta’s academics would be wrong. But giving up on her and not pushing her to make an effort would be equally wrong. Acceptance doesn’t mean settling for mediocre. Acceptance means finding the outstanding and excellence where you are!
So I started this blog for the purpose of encouraging myself and others to be intentional about relating to life. I hope (with the occasional artistic license) that is what you have seen here.
Sometimes, however, we need things spelled out for us in a very practical manner. So exactly how does one become intentional about relating to life? Let’s look at the three main words: intentional, relating and life. If we look at it backwards and describe it, we might describe life as active moving essence. We could describe relating as understanding how something applies to us or seeing our connection to something. Intentional of course meaning purposefully, meaning to, choosing to do it without hesitation.
So, how has it been for you lately? Have you been seeing your connection to active moving essence and choosing to do so without hesitation? Have you been understanding your marriage more, purposefully? Have you been relating to your kids more – meaning to do so? Don’t leave anything out. To get the most out of life, we need to be intentional about every aspect. Don’t hold anything back. Live life fully, purposefully and without hesitation!
My husband has accepted the accountability of the family in helping him to reach his weight loss goals. The end of 2011 and most of 2012 was quite crazy for us. Greta being hospitalized for ADEM, my Crohn’s Diagnosis and subsequent torture via modern medicine were bad enough. Add to that Karl’s desire to understand and be sympathetic regarding all of the surgeries I’ve had, so he decided to have his appendix removed. Yes, 2013 is the year to put the medical nightmares behind us and get our health back!
Karl’s goal is simple. Lose 43 pounds by his 43rd birthday. 43 by 43 is his slogan. Matthew, our middle child, has risen to the challenge of being his father’s diet drill sergeant. He takes his job seriously. He asked Matthew how many of the Danish butter cookies he could have. Matthew’s response – NONE! Karl’s reply – None???!!!! Matthew then proceeded to examine the tin of cookies again and give in. “You can have those crumbs.”
We all busted up laughing, and Karl ate no cookies and no crumbs. Karl also got to notate the weight loss from yesterday on his chart this morning. Way to go Matthew! Do you want to do something? Are you serious about it? Go for it like you mean it. Don’t even take the crumbs!
My husband was sharing some of his recent conversations with some church members, telling how prayers have been answered in some areas. He told me how he spoke very bluntly (I would say rudely) to one person and I responded, “You said that to him?” My husband of course replied, “Yes.”
I was beginning to think my pastor husband had lost his “bedside manners,” with some of his parishioners, but he continued. “He likes it when I talk in his face, because that’s the way he is. If I didn’t, he wouldn’t appreciate anything I say. It is how he communicates.”
I ran this bit of explanation through all I knew about the various church members and realized, he was right. He had taken the time to know the person and know how to best communicate with them and after praying about pastoral counsel, went for it!
It was a good lesson for me. When I really need to communicate something important to someone, do I study them and know how best to present it? Have I learned how they would be most receptive to my words? Do I take enough time to show I care about who they are to converse with them in a way that makes them feel comfortable?
Do you have an important conversation you need to have with someone? Take the time to intentionally study them and learn how you can make that conversation something they want to be a part of.
I am all for accountability! It really works. My husband is back on his weight loss goals and we have the chart out again. He loves to hear the excitement of the kids each day when he lowers the number on the board. Hooray for daddy! The encouragement keeps him going.
As a woman, I can tell you right now that I have no intention of putting my weight on the chart each day. Karl has invited me to join him in his motivation tool, but I know my kids. They tell everything! What could I do?
Finally God revealed the perfect idea to me. Getting Down with Me Money!
I made a chart for the days of the week and a simple motivation tool. Each day that I put a down arrow on the chart (meaning my weight went down, however great or small the amount), that equals one Me Dollar – money I can spend on myself. I have the accountability of the public chart and the encouragement of the kids, but not the constant fear that one of them will reveal my weight at school to their friends. I also have a great motivator tool. You see, I always feel guilty about spending money on myself. You know; there are bills to pay, donations to give and always something more important than splurging on a little thing for yourself. My family will encourage me to use those Me Dollars and to keep getting down arrows on my chart.
I put my first down arrow on the chart today. Here is to many more down arrows and safe accountability.
Today, I’ll sit at a table at a health fair – creating awareness for Crohn’s Disease and other Irritable Bowel issues. Months ago, I searched online and found a Crohn’s patient advocacy program. I signed up. I got an advocate. She and I have talked and emailed numerous times. Today, she will be at the health fair with me and I get to meet her in person.
The patient advocacy program changed my life in many ways, giving me support and encouragement and pointing me in new directions when I needed it. It has been a long journey, but I’m grateful today to have this experience and hopefully give back.
Today, I hope to promote understanding. Crohn’s is not understood well and often stereotyped incorrectly. No, not everyone is pencil thin. No, not everyone has to run to the bathroom endlessly. It is such a broad disease that manifests itself in a variety of ways. Two patients, same gender, age, socio-economic background and whatever else you can imagine can both have Crohn’s and manifest it differently. Much of the pain and inconvenience isn’t in the open. Many suffer in silence.
Please click on the hypertext below to see a picture of our Health Expo!
My first time sitting at a “Crohn’s Disease” table. This will be interesting.