The Silver Lining of MS

There are a lot of bad things about Sarah having MS. In fact, sometimes in seems like there are an insurmountable amount of terribly bad things, and absolutely nothing positive about the disease. BUT when I really take a look at our new life, and I watch Sarah and Andy and Josh and Elizabeth and Bob I realize that in this devastating grief there is good. It is so easy to let the grief and sadness and anger and anxiety weigh down not only in my heart, but in the hearts of all of those who reside in this house and live with this disease (whether as the recipient of it or a brother/sister/father of the recipient).  This last hospital stay took on new meaning for my life, not only because I wasn't sure if this was a new exacerbation or a continuation of an old one (and I am still not sure), but because Sarah doesn't seem to be doing as well as she has after prior visits to our second home - Akron Children's Hospital.  Her vision is not responding to the medication as it has in the past. Her stomach has been bothering her (a side effect of prolonged steroid use can be ulcers) every day for the last 4 days, and her body aches all over in a way that has not happened in a way that is new to us. She also has been getting bloody noses the last 4 days. I am scared this time around. (Putting her on Avonex - in case some of you are wondering at this point why I don't just do that - will not help her current condition - it will only (supposedly) help future relapses.)

You may be thinking at this point what could possibly be good about MS?  MS has given all of us several gifts, but me especially.

1.  We are closer as a family unit, and work better than ever as a team (most of the time). 
2. The kids are slowly beginning to understand that not all disabilities are seen. Some are below the surface, and are very hard to detect. 
3. Sight is a gift. For so long I have gone through life with blinders on - only paying attention to what was right in from of me - blinded by anything not directly in front of my path. Now, I can see that there was so much more out there than I let into my sight. 
4. Life is not about rushing through things just to be able to put a completed check mark by every event. I want us all (but, let's be honest, especially me) to be able to enjoy what we are doing each moment. To savor it. To see it. 
5. Health is a gift. I didn't see that before. I saw health as a right. The remaining 5 of us need to honor Sarah by taking care of our bodies. Sarah would give anything, ANYTHING, to have a healthy body. MS has shown us all that nothing is a given, and that you never know what tomorrow may bring. We owe it to Sarah to take care of what we have and to not abuse our bodies by stuffing it with crappy food, beverages, or anything else that is harmful. It would be a slap in her face if we didn't take care of her bodies, and I will not dishonor her by allowing myself or anyone else in this house do that to her.
6. This latest bout with MS has shown me that all of the hikes we went on the last several weeks were time well spent. If, God forbid, Sarah's vision were to permanently deteriorate I could teach her what 4+4 is without using her eyes, but I could not teach her how beautiful the fall trees look when their leaves change color. I want to show her as much as I can now, so that she can store it away forever. Being stuck in the house with book upon book isn't the best use of our time right now (although we are still doing book work, we are just doing it in the evenings). 

I never in a million years thought that I would find something good in all of this sadness, but it is there. I just had to look for it, and I am very glad that I did. I will carry these pieces of silver lining in my heart, and hope that they carry me through some of the dark days that I am sure will come.