Tribute to a Woman on an Airplane

So, Ingrid has this thing called congenital pseudoarthrosis of the tibia. It is as complicated as it sounds and looks. (In fact, Joe had a nightmare about a week ago where he was in school and was taking a spelling test. He had a partner, me, and we had to spell 20 words. Well, guess what the third word on OUR test was. Yep, you guessed it. Time ran up as we debated on how to just spell the name of the condition Ingrid has. I'm sure it is pretty easy to decide what that all means.) Anyway, so Ingrid's right tibia is messed up. The tibia is the big bone that we need below our knee. (Please don't think I am trying to be patronizing. I wouldn't have remembered that five months ago.) She has a condition where the bone makes a fake (the pseudo part) joint (the arthrosis part) in the bone, and once it has broken (rewind to May), it cannot heal.

And you might ask, "If it does not heal, what does the bone do?" Well, it mends at a v-like angle, leaving her leg looking really deformed after awhile, and the bone begins to nibble on itself--like in osteoporosis. This condition is rare, and most ortheopedic surgeons have read about it but not operated on a kid with it. So, we are seeing a doctor in Baltimore who has seen 18 kids with the condition. He will do something similar to what I will describe:

1. Cut out some of the "bad part" of her tibia
2. Take a large chunk of her pelvic bone out (replace that empty spot with a sponge--the bone will grow back)
3. Insert a rod in her tibia to stabilize it
4. Pack the removed pelvic bone around the "bad bone" site
5. Rod some of the bones in her foot
6. Bird cage her leg for a month

This surgery will take place in the next few months in Baltimore. We will then return to have the bird cage apparatus removed about a month later. She will wear either casts or a full leg brace through her teenage years in order to protect her leg. Hopefully, she will make it out of her growing years with a complete right leg and a close-to-normal gait.

Ingrid is amazing, really, she is. She has figured out how to walk on all 5 of her casts and now her brace. Whatever happens, she will be fine. (We will try to as well.)

So, the story of the woman on the plane. We flew to Baltimore this summer to meet Ingrid's doctor. Our flights as follows:

1. Memphis to Cincinnati (Interesting thing: Ingrid's casts and bitty hands were swabbed to test for explosive residue. Yep, they thought we might have just made our daughter stuff a bomb down her own little cast. I was shocked the first time. The other times I expected it. I made no jokes about it, though.)

2. Cincinnati to D.C. (We shared that flight with a famous PBS person.)

3. D.C. to Atlanta

(***Finally! The story! So, we sat next to a woman on this flight. She was from ATL and had 3 kids. She was funny and entertaining. She always seemed to be able to pull out something from her purse in just the nick of time to entertain Ingrid. She was sincerely happy to sit close to our little girl. So, there was a storm in ALT, and we spent an extra hour in the air, circling and waiting to land. Ingrid had had just about enough of it all and began to cry. Unfortunately, nothing would calm her. I cried; she cried. I was sure that everyone on the plane was wishing Ingrid would suddenly go mute. It was embarrassing. We were so fortunate to have sat next to the woman we did. She sang to Ingrid and talked to us. She calmly read her magazine like Ingrid's cries weren't bothering her. She was a comfort to us. I hope to be that person for someone else some day.)

4. Atlanta to Memphis (We arrived 5 hours late, thanks to a 2 times postponed flight.)

So, now we have a couple options for out next trip.

1. Drive the 18 hours to Baltimore.

OR

2. Fly (this time get our big girl her own seat) and hope that the ATL woman is flying that week too.

Tribute to Uncle Dan

When Jack was born, Dan drove to Memphis twice in two weeks to introduce himself as Uncle Dan. Since then, he has been the best Uncle Dan there ever was. Even living in Pasadena, California, Uncle Dan visits at least a couple times a year. When Ingrid was born, Dan flew to Memphis just for the weekend so that he could to meet his niece. Every time he travels, to Hawaii or Burning Man, he sends his nephew and niece a postcard. He changes diapers, gives piggy back rides, reads books, and takes naps. He is a great uncle. During Uncle Dan's last visit, Uncle Dan taught Jack to say, "Beat down!" This was part of a great wrestling move. I don't think Ingrid and Jack could ask for a better cool dude to call their uncle. (And he's a pretty great brother-in-law too.)

Lucky Me

This week a friend asked me if Jack had gone through that "no" phase. (She is experiencing it right now with her own two-year-old.) I hesitated, and then said no. He had not. Now, this person knows Jack has autism. She knows that right now all of his language is prompted. That we go through flashcards everyday, hours of speech therapy each week, and facial exercises twice a day. She knows all of this. But she still said, "Oh, you are so lucky."

I am so lucky? I know it was not a comment meant to hurt. But it did. It cut, and I bled.

Collections

I have discovered lately that I can label my life through (until now) unidentified collections:

1. The dozens of books, manuals, magazines, and catalogs on autism

Honestly, I think I thought if I can just read enough about Jack's autism it might suddenly go away. You know, just like the Scholastic 'Class Reads' offer--read 200 books as a class, and they will donate a certain amount of money to a school library. I am slowly realizing this is my desire. If I can just understand autism, the theories of it, the methods of therapy, then I can defeat it. That is ridiculous. So, I am making the pledge--no more books. (Although I really did like Lynn Kern Koegel's books.)

2. Boxes of tea

I have always liked tea. No, not always, but I have always liked the idea of tea. (And I certainly love tea now.) I had tea parties with my mom when I was Ingrid's age. Now Ingrid has the same parties. My tea drinking has gotten to be a bit of a ritual. To make a pot of tea revolves around a series of steps that must be followed exactly. It is where I can control my life and I do: in the boiling of water in the kettle, turning off the whistling kettle for a 30 second wait before pouring it over 4 tea bags in the red rose tea pot, waiting 6 minutes before taking out the tea bags and then adding 2 spoonfuls of raw sugar. It is interesting to note that milk was added to the tea cup first as necessity, not ritual, the fine bone china of the tea cup would break if the hot tea was added first. (Thank you, Splendid Table NPR)

3. Bottles of whiskey

Joe collects them, and in a different life I drank my share of whiskey. Now Joe does, but it is good to know it is there if needed.

4. Four pink or white signed casts

So, I think we need to put Ingrid's casts in a plastic tub and store them in the attic, but right now they decorate various rooms of the house. We have them on dressers and bookshelves. It is a permanent reminder of the journey we are going on with our brave little girl.

Jack the Modern Cowboy

This is Jack. For the first year of his life he hated baths. We gave him a bath whenever he was truly smelly, so not very often did he bathe. We tried everything. We warmed his towels, warmed the house, used the kitchen sink, anything. He hated it. Looking back on this year of Jack sensitivities, I find it humorous that we didn't catch on that he wasn't a normal kid. But we hadn't had another kid, and just (rightly) assumed our child was special.

He is four now and for the last year we have known he has autism. In his four years he is constantly changing. Take that first year of bath phobia. He was a hypersensitive child. He now has replaced his hypersensitivities with hyposensitivites. This means he craves the same input to his system that used to be so off-putting. So bath time is now enjoyable. He, with his 45 inch/44 pound 4-year-old frame, will lay in the bath and slowly spin. While spinning, he grinds those teeth and hums. I imagine those underwater vibrations sound very much to him like all the sounds adults, teachers and other children make all day. Except in the world of his bathtub, he isn't forced to repeat or make eye contact. It is a cocoon.

Today he had strep throat. I knew he was sick, but I didn't know what was wrong. He communicates through action and by the late afternoon I knew it was time to call the doctor. It is not ever easy to know your boy is different and life in a neurotypical world will always be challenging, but it is painful when he is sick. I wish he could just whine because his throat hurts or scream that he has thrown up in his room, but instead he is stoic and silent, like a cowboy, and I discover it heartbreakingly late.

I am grateful for his bath time cocoon, and hope he finds more things like that. We need them.

Ingrid Is Plucky

So, this picture is from earlier this summer, but it sums up Ingrid's outstanding temper tantrums pretty well. Of course, most of the time she is an angel. She rarely causes trouble. But times, they are a changin'. In the last month or so, she proves (daily) that she has indeed inherited her mom's, dad's and grandmother's temper.

Scenario:
Someone doesn't follow her very polite request for more juice.

Ingrid calmly repeats herself. This time she adds hand signs. Obviously, the person doesn't understand simple language.

Unfortunately, this too does not work. Therefore, she must use other methods of communication: throwing toys, flinging herself dramatically on the ground, getting up fairly gracefully and doing it again--esp. if the person not giving her what she wants is trying his/her hardest NOT to pay attention--, crawling over to swat at the nearest person, then ending with a NO!

This never ends well for Ingrid. Time out--no juice, but the tantrums continue.

So, I am thrilled about this behavior. It is so neurotypical. I tell everyone about it. Of course, I try not to encourage it, but I am pleased. Our gal, the one with a lame leg, is communicating.

That determined spirit, her feisty, pluckiness will serve her well.