Tuesday, July 28, 2015

A Beautiful "Butterfly"

This past Sunday, the disability ministry that I am blessed to be the program director for had a picnic that started about 11:30 a.m. We had a handful of firemen and a policewoman there who brought two big fire trucks and a police car to look at. We also had face painting, a petting zoo, lots of games and yummy food. About 2 p.m., a van pulled into the parking lot. The doors opened and five disabled residents from a group home got out. I went over to welcome them to our picnic and directed them to one of the tables. I then sat down between two of the women. The lady to the left of me immediately fell asleep in her wheelchair. The gal to the right of me who looked to be in her mid-70's was looking straight ahead with a big scowl on her face. She looked incredibly ticked off and mad, like the last place in the world she wanted to be was at a picnic talking to someone she had never met before (me).  I asked her a bunch of times if she wanted to color in one of the coloring books we had and she said no. I tried asking her questions and she didn't answer me.  I was beginning to think she was deaf and/or non-verbal. I was going to keep sitting there just to keep her company, even if she didn't utter a word.  One of the volunteers that had come to help at our picnic, was handing out free harmonicas and my new "friend," was holding one on her lap. After a bit of coaxing, she took the harmonica out of the box. Her hands were gnarled, but she was still able to hold it herself after I showed her where to place her hands. I then told her where to blow into it.  Lo and behold, she proceeded to play a handful of songs!!!  After she got done with her "mini concert," she started to talk to me!! She had the most beautiful voice and we chatted for a while. After me asking her multiple times if she wanted to get her face "painted," when one of our face painting volunteers came over and asked her, she said yes! She was wheeled over in her wheelchair to the face painting "area," and I chatted with some of the other disabled residents at the table. When my "buddy" came back, she didn't have her face painted, but rather on her knee was a butterfly!  She kept pointing to her knee and telling me, "butterfly." Around 4 p.m., the residents had to go back to their group home. My awesome face painting volunteer and I assisted the two caretakers in getting everyone loaded back into the van. I gave my new friend a hug and when she was settled into her seat, I looked over one last time at her. She was looking straight ahead, but now had a big smile on her face.  Good-bye, my sweet beautiful "butterfly," I'm sure our "paths" will cross again soon.

Sunday, July 19, 2015

To the Mom at the Music School

 
 
I know that you felt uncomfortable in the music school waiting room last Wednesday night. I saw you shifting in your seat, like you would rather have been anywhere else in the world, but where you were.  When I started talking to my friend in the wheelchair, I could see you staring at me. When the two young women with special needs starting chatting with each other, I watched you look at them and then turn away. I'm guessing you felt out of place when the three moms of the adult children with special needs started chatting happily amongst themselves at the table next to you. When I was waiting for Dominic's teacher to come and take him back for music therapy, I could tell by your expression that you were trying to guess what his "disability" was. When I saw your son coming down the hallway from his music lesson, I watched you bolt of your chair and rush your son out the door. When Dominic and I were walking to our car and you and your son were getting on your bikes to ride home, I tried to make eye contact with you, but you kept looking down. I really wish you would have looked up, so Dominic and I could have said hi to you.  I hope to see you again at the music school. I could tell you that we are not so different, you and I. We are the same. We both have sons that play music.
 
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Sunday, July 12, 2015

A Sister and Brother Summer "Bucket" List

Back at the beginning of the summer, Lauren decided that she would start a "bucket" list of activities that she wanted to do alone with Dominic. Given that she has her own car and license, I am not required to be a "chauffeur." This was an idea that she thought up on her own - I had no hand in it whatsoever. She told me recently, "it's fun to do "sibling" things with Dominic!!" In all ways, they are "typical" siblings. So far, they have watched a movie in a movie theater:

 
visited the library, played tennis and went for Slurpee's at the 7-Eleven!


This summer has been a bit of an adjustment for both "kids," because Lauren has a summer job and she is working long and late hours. When Dominic hears her car pull up in the driveway, he will come to the front door as she comes in and say, "surprise, welcome home La-La!" It definitely puts a big smile on her face (and mine). Lauren told me recently that she and Dominic have three more items on their "bucket" list - going to Dick's Sporting Goods at the local mall, bowling and ice skating. There are only six more weeks left before Lauren leaves for her sophomore year of college. They better get moving!

Tuesday, July 7, 2015

Why My Daughter is My Heroine

What if you had the chief of pediatric rheumatology at a well renowned hospital in the Midwest, look you right in the eye after four visits and tell you that even though your child had the positive genetic marker and the family history for an autoimmune disorder called ankylosing spondylitis that wasn't what she had? What if you had been told your child was, "failing to thrive" at age 14 and you watched as her weight plummeted to under 90 pounds, feeling helpless and unable to help her? The child I am talking about is my daughter, Lauren.  When the chief of rheumatology looked at me that day and told me basically that nothing was wrong with my child, I knew that something had to change immediately. I needed to stand up and speak up. I was not going to give up, it's just not in my nature. I have advocated tirelessly for Dominic since he was diagnosed with Autism at age 2 1/2 and with Lauren it was no different. At Lauren's next doctor's appointment, I told the doctor that I was working closely with here locally, "we are done with the director of pediatric rheumatology, you need to send us somewhere else." We were sent to a pediatric rheumatologist located at another hospital over an hour way. At the first visit, he agreed with my "diagnosis" of ankylosing spondylitis and put Lauren on a self-injectable medication, that gave my daughter her quality of life back. She has been able to lead a normal teenage life and participated in eight seasons of cheerleading in high school as well as being inducted into the National Honor Society. Lauren missed many days of eighth and ninth grade because of doctor's appointments, but she never missed a day of school because of how her autoimmune disorder made her feel. When Lauren turned 18 last year, she could have said, "okay, I'm an adult now and I don't have to listen to my mom!" Thank goodness that was not the case. She and I work together as a "team" to keep track of her doctor's appointments and medication refills, even as she gets ready to start her sophomore year of college next month. Lauren and I have always been close, but guiding and assisting her through the challenges of being a teenager with a serious autoimmune disorder has brought our relationship to a different level. According to the Merriam Webster dictionary, a heroine is, "a woman admired or idealized for her courage, outstanding achievements, or noble qualities."


To me, that woman is my daughter, Lauren.