Most Exciting Milestone!

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*suck from a special nipple- 5cc at 6 weeks
*lift head from surface while in prone position – 20 weeks 1 day (my birthday!)
*removal of gastrostomy feeding tube -8 months
*chromosomes used in research which successfully resulted in a new method of stretching and staining the bands which means more accurate diagnoses – 1 year
*sit – some of these require that I locate her baby book
*first tooth-
*pull to stand-
*crawl –
*walk – somewhere around 3 years

As I attempt to write about these early milestones, I notice that the milestones most parents fret about must have been inconsequential in the scheme of her life. I have no recollection of when they occurred. As you can see though, I remember the ages she did things that other parents would not know were momentous events. Sucking and neck strength, most of your children had these skills the day they came home from the hospital. Every time I hold a newborn I marvel at the strong neck holding up its heavy head and remember the games and histrionics we performed to encourage Katie to lift hers. Tears well in my eyes when I hear a baby suckle at a breast and my memory turns to the sweet nurse who was brave enough to break through my “I must keep pumping – breast is best” barricade to grant me permission to stop. She had witnessed my relentlessness in attempting to bring forth milk from breasts whose only stimulation came from the “swoop-swoop” of an electric pump. I drank copious amounts of water and was never a second late hooking up the pump. I would sit alone in the “Mother’s Room” rejoicing if any dribble of milk appeared, but mostly I grieved the moments lost with my precious child while I wasn’t in the nursery. I slurped my water, the machine swoop-swooped, and my heart pounded through my chest while I wished I was near enough to see and touch her. While we drove the 90 minutes each way to see her, I splinted my abdominal incision with a pillow and ignored the pain brought on by each bump in the road. Pardon me, I lapsed into a story for another day, but you can see why I didn’t want to spend any of my moments in Peoria without her…. back to milestones.

One thing I learned very early on was that things happen when they are supposed to happen. I can encourage, cajole, wish, hope, pray, stew, worry, pace, cry, bribe, demand, threaten, and give up; all to no avail. None of these things will make any difference if the time is not right. Encouraging and cajoling will help bring the child to the milestone. Hoping and praying will bring me peace and comfort during the wait, but always the most important part for keeping sane is to know that  “I am not in control”. I find that to be a relief. I realize that if the milestone is never reached it is not due to my lack of trying or through any fault of my own. I am not in control. This did not give me a free pass to not try to help her reach the milestones, it simply made me realize that if I did my best, everything would happen as it is supposed to….when it is supposed….IF it is supposed to happen.

When I learned about Prader Willi Syndrome’s bizarre characteristics. My main concern was that my child would always be hungry. In Social Studies we learned that the three basic needs of civilization are food, shelter, and clothing. Knowing that I would never be able to squelch the pangs of hunger of my child left me feeling inadequate as a mother, unable to provide an essential need. Elimination of the hunger has been my fervent prayer since she was four days old when we were alerted to the possibility of PWS. I have always hoped that modern medicine would accomplish this in her lifetime. I never expected to see it during mine. Her gila monster spit medicine(<ahref=”http://http://vandemom2.wordpress.com/2014/06/01/rescued-by-a-gila-monster-and-the-creativity-of-scientists-we-hope/“></a>)
might not be the full monty, but it surely is the closest anyone has come thus far.

I was at work and Katie was with her father after spending the day with her grandmother and various aunts when she sent me this text:

July 22 5:35 pm

what should i do dinner i went tramimu because aunt chris want to show aunt mary is good she had a bad one last night and not very hunury had bumch salad what should do

TRANSLATION of the words, not the punctuation what should I do for dinner, I went to tiramisu (a restaurant) for lunch because aunt chris wanted to show aunt mary that it is good because she had a bad meal there last night, so I am not very hungry because I had a bunch of salad ….what should I do?

BEST TEXT EVER.

A milestone I never thought I would see.

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Journeys

Many journeys I have taken, many lessons I have learned with each milestone my daughter has reached. When Katie was young I scoured every SPED type article I could find. Read every word and advertisement in “EXCEPTIONAL PARENT”. I learned early on that when introducing a new task or activity one should discuss it, model it and practice it. Unfortunately I am too lazy to implement each of those steps and spent most of our time, “winging it” and hoping for the best. For you to better understand my version of “winging it” you need to know that for me it meant: getting an idea, grousing to myself “How on earth could she actually do that?”, stewing over it, procrastinating on moving forward with the idea, sharing my thoughts with anyone who couldn’t run fast enough to escape hearing my litany, taking advice from the wonderful fans of Katie, presenting the idea to her, talking about every single aspect of what to do/what not do and how to react in case things go awry, then tossing her into the situation, hoping things would go well. In the meantime I would be pacing the floor with a phone glued to my ear telling everyone what was happening, then being totally surprised and happy that it all went well.

Last summer was no exception to my laziness rule. Summer water exercise class hours happened to fall on two of the days that I was working at Black Hawk Area Ed Center, not far from Black Hawk College. I thought that an excellent way to sneak extra exercise in would be for Katie to walk from the Center to the College and go to the water ex. class. Then I could pick her up when I finished work for the day. This would be her first foray going for a walk alone to get somewhere (other than walking to or from my parent’s). You must be thinking, “she has ridden that route hundreds of times, of course she will know the way.” That would be true for most people, but when one falls asleep the moment one’s bum touches the tuck and roll upholstery, whatever is passing by the windows is non-existent to the sleeper.

After getting the idea and grousing, stewing, procrastinating, and all of my other winging it phases, I sent her out the front door of the school once I had adjusted the straps of her backpack laden with swim gear. Immediately I had to share my angst with the first person I saw. Her first response was, “I can drive her there, do you want me to stop her and drive her there?”. I told her that I wanted Katie to continue, I just hoped she would make it there and remember to call me when she arrived. Bless her heart, this woman then offered to follow her and spy on her to make sure all was well! You have heard me say this before, but, people are so good!

We evaluated the areas that I thought would be problematic.

1. turning the correct direction out of the parking lot.

2. pressing the correct “walk” button on the stop light at the busy intersection.

3. after entering the pool building, steering clear of the vending machines! This, of course caused the most consternation, but we agreed, and so did the second person I dragged into my drama, that she would be so focused on her mission of getting there that she would not be tempted by the snickers and sun chips. One can alw

ays daydream, plus I decided….we decided that the experience outweighed the possibility of a vendo-gorge.

I was smugly happy with the adventure when my son phoned; my exceptionally reasonable, rational son cried, “you did what? you sent her walking by herself to Black Hawk College?!” at which point panic started to well from my toes. “Oh my gosh!” I thought, “if he thinks it is a bad idea there must be some aspect I didn’t consider.” Upon further discussion I discovered that he thought I was working at my other school for summer school and that I had sent her on a trek across town! Whew, once again I was happy with the adventure. I expected her journey to take an hour so I was pleasantly surprised and relieved when after 30 minutes she called me to say she had arrived without a hitch. Later in the day she explained that when she pushed the walk button she had to run to cross all of the lanes and still didn’t make it in time

Imagebefore the “orange man” showed up. She calmly said, “I put my hand out to stop the cars from coming at me. Next time I’ll have to run faster.”