Becca’s Dream

Becca was born in 1982. She never stood by herself untill late 1985. On May 17 1986 she took her first solo steps. She would walk holding our hands but would sit down immediatly if we took the security of our hand away. We had her hold onto a balloon that we were holding and walked her from one end of the house to the other and back and forth again and agian. When I had the camera her daddy let go of the balloon. She did not notice, just kept on walking. She was quite upset and not a little panicky when she first realized that she was walking on her own but soon adjusted to the idea. 

Becca's first independant steps

From then on she just kept going faster and faster always with her head down. Becca would careene and crash through life for the next twenty three years. For all of those twenty three years we battled to keep her safe and to get her to walk with her head up. Nothing worked.  Did you know that if you run head long into one of the metal posts in a mall they will actually ring like a gong?   Warning checking this info out can really hurt your neck or knock you unconscious.

Three weeks into the FTEA program Becca started lifting up her head. She has come close to crashing into posts and walls but has lifted her head just in time to pull up short of a crash.

Dec 9 2009Becca as she walks now with head up.

After her stroke in 2007 Becca was not lifting her feet or noticing any uneven surfaces. She would trip and fall over the smallest bump in her path. After two months of riding she started showing awareness of bumps in her way.  We would watch her stop; fish with her foot by waving it above any suspiscious spot until she knew where to set it down. She now has an awareness of where she is in space and a visual awareness of what could endanger her as she travels. Twenty years of daily remedial work in school never made a dent in this problem but a few months on a horse once a week has resolved 90 % of the issue. We will keep her in FTEA just as long as we can afford lessons.

Abby Harr kept Becca from falling as she learned to run once again after her stroke

In many ways things seem to be falling in place for Becca. 

Ever since she started therapeutic riding at FTEA in the fall of 2009 we have seen her confidence blossom and grow.

FTEA first day 9-3-09

Listing to the left

Her left side weakness is obvious in these photos from her first day. Her side walkers were exhausted. The walker on the right had to pull on her gait belt the whole time and the walker on the left had to constantly shove her back into the saddle. At one point it appeared she might just fall off altogether. It was all the walkers could do to get her upright again.  Everyone thought Becca did not enjoy riding because while she made some grimacing faces there were no real smiles.  Little did they know. Becca had chosen to go riding even though she had had a unplanned root canal just a few hours earlier. Her Novocaine was wearing off and still she made me hang around and watch the next group of riders because she was so excited she refused to leave. She talked of nothing else but “Doc” for the next few days and how she got to ride him.

Only one month later

Every week the other parents, who also had first time riders, and I would stand about and watch in amazement at the changes in our children. From week to week we could see them get physically stronger, sit taller, participate more. We would all three cheer loudly for each new accomplishment in any of the children, often asking did you see your daughter/son do that ?

For Becca the biggest growth issues have been confidence and the ability to finally process her thoughts into speech.  We went from having a daughter basically locked with in herself, who did nothing for herself, never stood up for herself and whose only language consisted of echolalia and perseverated speeches; to a daughter who had a whole new world and life opening before her. Previously if Becca was hungry she would stand in the kitchen and stare at the fridge or the toaster and wait until someone noticed and asked if she was hungry and then fixed her something.  I was stunned the first day she went out ,opened up the fridge, then the freezer, and chose an ice cream bar. I asked what are you doing?  She replied I would like an ice cream. I told her good choice and asked her to please close the freezer and ask first next time. The next time she asked and of course I said yes. She has asked for many small things since then and we have accommodated about 99% of them. With each yes her confidence grew and our amazement grew as we were finally seeing glimpses of  what was locked inside our child all these years

a first attempt at posting

Tall in the saddle at five weeks

Becca has been, literally under the weather. Swinging barometric pressures just kill her. With pain in her head that forces her to sleep most of the day.

Yesterday, when she was awake, we saw 2-3; 30-60 second petite malls every hour.

Can you imagine going about you day and every 20 minutes your body and consciousness freezes for a minute or even just a half minute. What happens if you are in mid-step on the stairs? Hopefully someone is there to catch you as I was when Becca came careening  backwards down the stairs two days ago.  You definitely would not be allowed the independence a driver’s license affords. What if you are in the middle of lifting a roast out  of the oven or draining a pot of spaghetti? Even carrying a carton of milk or eggs can get very messy and frustrating. How much information would you miss while sitting in a lecture or listening on the phone?  How much confusion would you feel as you try to figure out the rest of the lecture/conversation with that much info missing? What if you are crossing the street?  See “Being grateful has me remembering” in the August archive for one of Becca’s harrowing experiences. I could go on and on. Could you picture a word document full of one single letter???????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????? That was just five seconds worth! Go ahead move the bottom slider.

Give thanks for your blessings and remember to be patient with those less fortunate than yourself.

Nathaniel came to visit this weekend.  On Sunday we picked him up and went on to see Jonathan . It was the first time in over four years that Becca had both her brothers in the same room at the same time. She was delighted and stayed close to both of them.  When it was time to come home she was quite distraught that Jonathan was not coming with us. She fussed for a full half hour. Of course she blamed me that Jon did not come home with us.  After all I was the one driving the car away without Jon in it. It was also my fault today that Nathaniel left as I drove him to O’Hare. Lucky Roland, he drove to pick up Nathaniel and most of the way to visit Jon.

Nathaniel and Becca both share a belated Birthday cake.

Nathaniel and Becca shared a belated birthday cake. 31 candles for him and 27 for her.

Sharing the job of extinguishing the candles.

What can we give to the King?

In song the STARS queried about what could they bring to the king? Bring to the one who had everything?  There answer: bring him their hearts opened up wide, bring him their lives with nothing to hide, and bring him a love that is faithful and true.

Scarfs representing the night wind

Karilyn sang to us about the night wind asking the little lamb if it saw the star dancing in the night.

our little lamb

Dancing in the night

The lamb tells the shepard boy about the song and the Shepard boy tells the King about the shivering child.

shepherd boy

The King comes out and declares all should pray for peace for the child sleeping in the night will bring us goodness and light.

The story could not have been better told by seasoned actors. This pageant done by people so pure of heart is truely a joyful Christmas event not to be missed.

Pray for peace

Dec 11 2009 Finally Mary

All those years of wistful thinking and hoping and wishing and finally: Becca is Mary. All those months of preparation and anticipation did not prepare Becca for the stage fright she would face during dress rehearsal and before the program. We ended up at dress rehersal adding her daddy to the cast. Squatting down on the floor behind her he hung on to her so she would not bolt away. It was good that we had to work that out in practice for we had to do so for the performance as well. The night of the program Becca was so scared she actually got up from her seat before the program and started leaving I had to call for help to wrestle her back to her seat and keep her there.  Thank God for our program director. Dawn’s voice and style of communicating is like pouring oil on troubled waters. She talked so calmly and encouragingly with Becca that Becca agreed to stay and participate as planned. Prayers said then and there for Becca, in her hearing, seemed to seal the deal.

Taking care of baby Jesus

As the evening progressed Becca really got into her part as Mary.  Afterward she would not get out of costume and enjoyed all the attention and compliments she received during the cookie reception.

Listening to the angel choir