I must always, always remind myself that I have come a long way. Still, I always thought my weeks would have steadied out by now, my symptoms would have steadied out by now. I wasn't scared when I lost sight in my eye because I knew it would come back. I knew the pins and needles in my face and my tongue, eye, neck, etc.. would go away (they haven't). I knew that I would be the 'Poster Child of MS". I would do the incapable and unthinkable with this disease. I would run marathons, I would have the body of an athlete. I would be travelling the country doing speeches and talks about what Ive conquered... Its been 8 months, to the day, of my diagnosis. Its not quite like that.
It got discouraging for me, as any challenge does that I cannot meet or exceed. Then, in one moment of clarity. Those moments have always puzzled me. You think you are in tune with your life and have an excellent open view of what's going on. Then, you get these moments where you see things in a whole new light. Well, In my moment of clarity, I realized, I AM the poster child of MS. I am the poster child of MY MS. It is such a strange disease in that I am nearly fine one moment and then nearly debilitated the next. I realize that when I walk the dog around the icy backyard and manage not to run into anything or fall, I am the Poster Child of my MS. When, at the end of the day, Im SO tired and my leg cramps are SO bad and my kids want to be carried and I just want to go get the wheelchair from the garage so I can sit and pull them around like I used to, but I don't, that I am the Poster Child of my MS. When I drive to Hartford in the pouring rain to bring my 2 yr old to a Dr apt all by myself and manage the parking and the doors and the unfamiliar places, I am the Poster Child of my MS. I know, I mentally lowered my bar, but the things I do are pushing me, challenging me, they are the maximum of what I can do. And I realize that many other people out there with this disease are their own Poster Children as well. I have come up with a system to keep me going. I start the day running. I make an unattainable list of things to get done. I go, go, go. I set my bar as high as it can go. I try to out perform the average person each day, no matter how I feel. I push through the tired and the hurt and I just do it. So, the days I physically or mentally CANT.... Im like a normal person, not supermom. For now, it works.
This is a good week for me. Ive accomplished so much here at home. Ive even been able to watch the kids and the house and the dog while Al has been gone for the week. Some points were not easy, not easy at all. Amelia had her annual check up at Connecticut Children's Medical Center with her Cardiac Specialist. She has two holes in her heart. One not so worrisome, but one actually in the Pulmonary Vein right at the entrance to her heart that causes the blood to flow into both sides, instead of just the one. This causes stress on the right side of her hear and will make it larger over time. We have been checking on this since in utero and finally put a surgery date on the calendar, next January. The doctor would like to do it before school and I would like it done in the winter so she has time to heal and doesn't miss summer fun. The surgeons say this is a "routine" procedure....but you know how that is. Sometimes for a patch on the heart, the surgeon can go in through a vessel and apply the patch, but this is a bit more complicated, so they cant. Its been on my mind since before her birth, but especially since my diagnosis. When I was in the hospital I thought "how am I possibly going to be able to stay with her if I cant take care of myself". All the doctors are so incredibly compassionate and accommodating though. They assure me they will keep me stable for this and I can stay with her for 24/7 the week she is in the hospital. Now, what about my dog....
Amelia's condition is an Atrial Septal Defect and this video is great for showing part of what's going on. http://kidshealth.org/parent/interactive/atrial_it.html#cat141
The next day, after I took Amelia to CCMC, I had a specialist apt at Yale North Haven. Appt went great. The Dr actually said she saw "improvement" in my last MRI for the first time since my first MRI. YAY. I will go back in another 3 months for MRI and visit.
We made another big family decision and decided to adopt a "family" dog. Since our Annie passed away, our kids have been aching for a pet dog. We figured getting a family dog would also ease the stress on MY dog when I do end up getting it. Within a matter of days, thanks to a friend, we found the PERFECT dog. She is a children loving, obedient 5 yr old black lab. Susie has adjusted very quickly to our family and absolutely loves all the attention. She also helps me out here and there getting around the house. Im amazed at how much easier it is to get around with her and Im sure will be unstoppable with my assistance dog.
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