Edith Maxant – beloved cousin

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Posted by Kyron | Posted in General | Posted on 30-07-2008

I grew up blessed to have a fairly extensive family network. As with any family some were closer than other for a variety of reasons usually having to do with geography. One of my fonder early memories was visiting cousins in Ayer, Massachusetts – especially Cousin Edith. I was pretty young, I kind of knew something was “different” but I couldn’t put my finger on it and to be honest – she was fun….I just didn’t care! She always was happy and always interested in what *I* had to say or show off. I was always incredibly impressed that I had an olympic athelete in the family – one who had medaled in swimming no less! I thought she was amazingly cool! It was only years later that I understood that Edith was different because she had “Down Syndrome” and that the olympics she had competed in was Special Olympics. It didn’t make Edith any less cool however – in some ways it was more cool that despite any disability she lived this totally cool life and had such success and accomplishment.

Today, I received a note from Edith’s sister Ruth telling me that Edith had passed. I haven’t seen Edith or Ruth in years but I remember visits there with such fondness and joy that I wanted to share the wonderful eulogy that Ruth has written which made me even more happy to be able to say she touched my life and happier to know my Aunt Harriet and Uncle Richard were such groundbreakers – which I guess I should have known but in my family the fact that Edith stayed at home just never seemed anything other than normal to me. I like to think that this early exposure to Edith and my families treatment and incorporation of Edith into our lives gave me a better ability to make the decisions I have about Katherine. For this and so many other things I can’t begin to enumerate I am so grateful to Edith, for letting me just love her for her, to Aunt Harriet for having worked so hard to make sure that Edith had as “normal” a life as Ruth or Frank and to Ruth and Frank for being caring siblings to continued to care for Edith long after Aunt Harriet and Uncle Richard were gone. I hope to one day speak to you so that I can take lessons from you to help Katherine’s siblings long term.Rest in Peace |BlessedWeb.com

EDITH LOUISE MAXANT

August 12, 1944  – July 24, 2008

On August 12th 1944, a daughter, Edith Louise Maxant was born to Capt. Richard C. Maxant and Harriett (Henn) Maxant.  After taking her to several specialists, they followed the best advice, “Just take her home and love her.”   So, Edith Maxant became one of the few Down Syndrome babies to grow up at home and one of the even fewer children that became part of the community. Her Mom, Harriett, also became an advocate for children with disabilities. She took Edith to parents of special needs children and encouraged them to let their children live at home and be active in the community.

Edith had all the opportunities to do everything a “normal” child could do. She took swimming lessons at Sandy Pond and eventually overcame her fear of deep water and would swim across the pond and back!  Edith took ballet, tap and baton twirling lessons from Mrs. Desmond, participating in the recitals and never missing a step.

Edith was upset that her younger sibling got to go to school because it was “My Turn!” after her older sibling started school. Ayer had no special needs classes, so her Mother found Rollstone School in Fitchburg and drove her over every morning and picked her up every afternoon. The teachers at Rollstone School all loved Edith. She organized the kids on the playground and taught them how to swing a jump rope, how to play hopscotch and other games which she had played at home with her friends and siblings.  Harriett soon discovered Edith could take the train to Fitchburg every morning. The conductors all watched out for her and loved her cheerful personality. A taxi picked her up at the train station and took her to school and Harriett picked her up in the afternoon.  When Ayer started its special education classes at Page-Hilltop, Edith was one of the first students.

Edith had an infectious personality and a beautiful smile.  She always loved everyone, she seldom forgot a name or face. She did not take offense when people shied away from her, but tried to win them over with her gracious comments and sweet personality. Even as a child she did not let unkind remarks faze her. She would say, “It’s OK, they don’t know better.”

As programs for the handicapped grew, Edith grew right along with them.  She loved to jitterbug and wanted to attend every single sock hop put on by the Association of Retarded Citizens. (ARC)  She also loved to bowl and her Mom would take her every week to bowling at Mason’s bowling alley in Fitchburg.  Edith participated in the Special Olympics and won medals in both bowling and swimming. She would walk downtown Ayer to show her medals to everyone.

Edith was a member of the Federated Church and attended Sunday School and Vacation Bible School. She had perfect attendance medals for almost every year. Edith learned how to read and write and was never as happy as when reading her Bible. She often attended the services at other churches when people were willing to give her rides.

Everyone who knew Edith was touched by her life. She taught people how normal it is to love and interact with others regardless of handicaps. Edith stayed young, and as her playmates outgrew playing with her, she took to riding her bike and walking around town. People in Ayer grew accustomed to seeing her and would often offer her a ride home.  People learned that Edith was just…Edith…and they accepted her for herself; a loving, kind, gracious person who would not forget you and who would always try to help others

Donations can be made to: the ARC, (Fitchburg); the Special Olympics; or the Gideons.

Edith leaves behind: her brother, Frank Maxant, and her sister, Ruth Maxant-Schulz, both of Ayer; niece, Diana Simon of Bethesda MD and her two boys, Jeremy and Gabriel; niece, Christina Andres of McKinney Tx;, her daughter, Payten; niece,  Amanda Schulz of Ayer; nephews, Curtis Schulz of Ayer, and David Schulz of Columbus Ohio; and many cousins.

God Bless and God Rest Edith.

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Just In Case

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Posted by Kyron | Posted in General, Medical, Strategies | Posted on 21-07-2008

I just spent the past week at Childrens Healthcare of Atlanta – Egleston on 5West (big shoutout to the great staff there!!) Katherine developed what we believe to be acute (rather than chronic) pancreatitis. And if that wasn’t enough to cause this poor kid enough insane pain to break my heart she also had a greaChildrens Healthcare of Atlanta Egleston at Emoryt case of fecal impaction. Well I guess the good thing is that we got a two for one stay – got completely cleaned out while we dealt with the pancreatitis.

It was the second time I’ve really had to deal with hospitalization for Katherine since Donovan was born. It hasn’t gotten easier. As awful as it was I know full well I’m really lucky. I have both sets of grandparents who live within 10 or so miles of us and are

  1. retired (or mostly so)
  2. available (with rare exception)
  3. very involved with their grandchildren

My father and stepmother were with me as we took Katherine to the Emergency Room. Philip’s parents took over picking Donovan up from school. Of course that was only the first obstacle – we had a full week of obstacles while we juggled getting my husband to work, Donovan to and from school all while trying to maintain some sense of normalcy for him and someone to come up and relieve me once a day for an hour or so in an effort to make sure I wasn’t headed for a rubber room by the time this whole week was over. All things considered the week went pretty smoothly but it could have easily been disastrous!

At age 16 my parents left me at night when I was in the hospital. My mom was there all day with me but leaving me at 8pm and returning at 9am or so the following morning really wasn’t a problem. This is not even a consideration with Katherine. Katherine got freaked out every time I walked across the hall to the family kitchen to grab a cup of coffee let alone what would have happened if I had left her overnight and yet without my family I’m not sure what the heck would I have done!

We were in the best possible place, not only for Katherine’s medical care (a top rated children’s hospital in smack-dab in the middle of Emory University) but a children’s hospital is only dealing with children and is set up to give a lot of support to parents and the small patients alike. That being said I’m certain (because I read the handbook) that Donovan would not have been welcome to spend the night although he was welcome to visit during visiting hours. Realistically with all that was going on with Katherine physically however (and trust me when I tell you I’m doing you a favor by sparing you the gory details) having a toddler (who is making up for lost time with regards to the terrible twos) in the middle of all that was going on there was not going to be in any way desirable. I consider myself pretty good at handling both kids at the same time but even I didn’t want any part of that action!

About 2 days in as I was figuring out how Donovan was going to be picked up by one set of grandparents and transferred to the other because of various scheduling issues it suddenly occurred to me that there had been a time in my life where this whole thing would have been impossible. How do parents who have no family support or are single parents do it all under these circumstances? It suddenly dawned on me that eventually I wasn’t going to be so lucky. My parents as well as Philip’s are getting older and at some point I could very well be on my own in having to handle a situation just like we had this past week. Of course I hope it’s not going to be for a very long time, but I can’t really count on that. Because of this I need to figure out some basic kind of plan to have in place just in case. Realistically it’s probably not quite as important as all the legal plans, financial plans and the life plan or letter of intent….but it could go a long way to increasing my peace of mind to have something written out – Just In Case.

I went to therapy several years ago – things had just gotten catastrophic in my mind – work, home, everything. I couldn’t function except in the most basic of ways. My therapist – who I wish I could clone for the world he’s just that good – said ok so what’s the absolutely worst case scenario? I described it in vivid detail. He said ok. So now we’re going to write down what you’re going to do in that worst case scenario. He and I came up with the plan and it brought me some real comfort. I carried that plan around with me for quite some time. I was certain I would need to call on it at any moment. While I haven’t carried it around for the past year, it still sits in my jewelry box – Just In Case

Let’s just hope the Just In Case never is. Meanwhile I’ll continue to get my plan in place :)

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