*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
*pull to stand-
*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.
Being a nurse I have seen patients being dutifully cared for by their loved ones. Children and adults with varying degrees of mental and physical challenges who make it through each day due to the assistance of loving mothers, fathers, brothers, sisters, aunts, uncles and grandparents. I have watched grandchildren feed and bathe their infirm grandparents during their final earthly hours.
Today what I saw was different. I saw love today.
“Peter Pan” was playing at our local “Broadway in the Park” Music Guild Theater this afternoon, allowing Katie and I a chance to escape to Neverland. I only saw the production in the periphery of my consciousness and only through tears. I sat behind a woman in a wheelchair, not an elite motorized wheelchair which she might have looked at home in; you know the type that you can tell is a permanent fixture for someone. She sat hunched in a chair that looked like a rental chair or perhaps it was a borrowed chair from a living facility. Whatever put her in that chair was most likely a recent event. Her husband sat in the theater seat at her side. I watched because I couldn’t not watch, I was drawn to the one-sided exchange being played out before me. He leaned into her and whispered in her ear that the show was starting. His hand hooked through her elbow, intermittently patted, stroked and squeezed her arm. She did not respond, she did not lift her head, she did not pat him back, she did not lean toward him, she did not cock her head to hear him better. She continued to sit hunched in her chair and he continued to try to get her involved in their “date”.
I had a clear view of his profile and I watched his features expose his emotions. He looked worried as he told her the show was starting. I wondered if they were regular theater-goers and this was an outing that he hoped she might enjoy as she had in the past. I saw hope as she lifted her head during a particularly rousing crowing number, the “er er er er” got her attention briefly.
He continued to stroke and pat her arm. He rarely watched the show but once a smile came to his face when something happened on stage that he must have anticipated her liking, when he turned to her he saw her face was down and his smile left quickly, he was crestfallen. I watched him inhale deeply as his shoulders shuddered and he wiped away tears with his hand that was not holding on to her. He frequently spoke to her about what was happening in the show, occasionally she would clap when the rest of the audience applauded. I saw sadness and anguish, but what was most apparent and what overshadowed everything else I saw, was love.
I don’t know their story at all, but my outrageously vivid, romantic imagination played out many scenarios. Perhaps they were one of the known “Music Guild romances”, having met and fallen in love during a production they were in. Or perhaps the first date they had as 17 year olds was at the old open barn Music Guild to see the 1950’s production of “Peter Pan”. Maybe they had thespian children who had performed in “Peter Pan” during their childhood. Due to their age I automatically assumed that the emotions I was watching were because of many years together and the sadness that those years are coming to a close. I could very easily be wrong about that. There is a chance that the love I witnessed had not been theirs for a lifetime as I first imagined. Maybe they found love together recently, maybe they were the 17 year olds on their first date at Music Guild to see “Peter Pan” but then their lives took different paths only to bring them together again just in time to share love before the tragedy of ill-health struck.
I have no idea what the story truly is. I only know that the lesson to me was, there is love – always, there is love. While Peter Pan was busy onstage, crowing about never growing up and not wanting to be a man and stating “I am youth! I am joy!” I saw a man. I saw his wife. I saw love.
If Peter Pan could grow up to be a man with a courageous heart like the man I saw today, youth would not be so enticing.