“For the parents who had to wait longer to hear a first word, who spent more time in doctor’s offices with their child than on play dates, who endure countless bad days and the stares from other people…For the parents whose child’s first friend was their therapist….”
A friend posted this and each of these items fit so accurately, but it made me want to add things like…..
…For the parents who learned early to lean on others, to accept the generosity and kindness of others,
For the parents who found out that there is no reason to try to do it all alone,
For the parents who know that whatever one does as a parent it will never feel like it is enough or correct, but is the best one can do at any given moment,
For the parents who know the value of an occupational therapist, a speech path, a physical therapist, an appointment scheduler,a PH ITINERANT TEACHER : ), a “play lady”, a Lekotek leader, a thoughtful caring teacher,a good-natured camp counselor, a kind peer, a pleasant stranger, a compassionate listener, a hand holder, a good hugger.
For the parents who are repeat offenders of DWW (Driving While Weeping) because they have found that the car was a place where nobody else would be affected by their tears.
For the parents who have learned and are willing to share the fact that discouragement might put you face down on a closet floor wondering if you will ever be able to stand up again, but that before you are needed to resume your role, you are not only off the floor, out of the closet and standing, but wearing a smile for when that yellow bus pulls up in front of the house.
For the parents who have experienced more love than they thought possible, more heartache than they ever hoped to know.
For the parents who have been witness to strength to surpass muscle men, perseverance beyond measure, gratitude that touches the heart, smiles that are brighter than sunshine and courage equal to any Purple Heart Hero.
For the parents who are my peers, my supporters, my encouragers, my mentors, my role models, my friends.
Cheers to you!
In our society you do not need a calendar to know what season it is. If you listen to the conversations around you it will be evident. During the summer the talk is of bikini-ready bodies, flip-flops and suntan lotion. September brings freshly sharpened Ticonderogas, football games and Homecomings. Food, food and more food starting at Halloween and gracing every table, desk and counter-top through New Year’s at which time, for the next three months or for as long as their resolutions last, you cannot be near more than two people without one of them mentioning new exercise routines, diet recipes and how on earth they will ever survive their new weight loss regime.
Each of these seasons presents challenges to everyone, especially those living with Prader-Willi Syndrome. For anyone who is not familiar, I will hop on my soapbox for a moment and explain a few of the PWS basics that affect Katie. One: uncontrollable appetite due to non-stop hunger; an ever-present feeling of insatiability, yeah, you only think you have that. Now, pause for a moment and delve into your memory to the last time you felt real, physical hunger and imagine that as a constant during wakefulness and sleep. Two: low metabolism causing the utilization of fewer calories. By fewer, I will tell you the results of a metabolic test that she had done once showed us that her body needs only 880 calories a day to maintain. Three: Decreased muscle tone, this is what I fault for her lack of balance and coordination although that might simply be because she is the daughter of the clutziest woman on earth. Four: Back pain due to scoliosis. Now that you have had a crash course on a few of the reasons weight loss and dieting can prove to be problematic for Katie you will better understand how awesome she is.
Katie and I have joined a local Biggest Loser Contest, we are a part of 50 contestants. Although we are competing against each other every week for 3 months, I wanted to write that we are a part of a 50 member team. Through the encouragement of Josh, our “head coach” everyone is supportive of one another, we are all in this together with a common goal. I would be happy to not win any of the $50 entry fee if I could just drop some of this weight. I listen to the struggles and the plans and the confidence, or some days lack of confidence of the others and I think it is amazing to see their dedication and their strength. I know that we all come into this with our own baggage, both physical and mental baggage, but then I think of Katie, who has these extra challenges that are innate. I have the privilege of watching; her concentration as she (oh, I forgot to mention the need for insulin four times a day due to a secondary diagnosis of diabetes) calculates her carbohydrates, her calories and her insulin, her determination as she vigorously works out during a water exercise class, her perseverance as she starts her third quarter of a mile during lap swimming, her exuberance during a rockin’ Wii Just Dance session, her stupendous awesomeness while participating in and completing two 5K s. I have included photos of those incredible days. The first year that she was in a 5K was a bitter cold day, after the start off, she was alone behind the rest of the participants and from the sidelines I tried to encourage her to cut through a parking lot thereby eliminating the one and only hill portion of the race, she vehemently refused and said that she had to stay on course because she had a chip in her shoe! You will find her name next to the entry of the word integrity in the dictionary. She plodded along, down hill and up, in one of the pictures in the attached link, you will see a woman wearing the number 41. She is a total stranger who after finishing the race, ran back to the half way point to walk alongside Katie during the rest of the race. Please take special note of the time clocks in the photos, you will see that in her second race, the one with much nicer weather, she got a new PR beating her time from the previous year.
If you are one of our Biggest Loser competitors, anytime that you get discouraged or think that it is too difficult or you are faltering I want you to think of my remarkable daughter who is in this with you. If she can do it, so can you!…. So can I!