How does one celebrate life? In 1986, while I was pregnant I had ideas in my head of what my new baby’s life would be like. I had the fear of bringing a child into a world where the new ice age was still being predicted and the Russians could attack us at any moment, but pregnancy in and of itself proclaims optimism. Every time a person is pregnant the possibilities for potential are mind boggling. What will this life inside me do? Will great scientific discoveries be made? Medical advancements? Compassion to all one encounters? Will this baby know joy and laughter? As a mother, I wanted a grandiose life for this new baby. I wanted him or her to follow in the big footsteps of the older brother, Jacob and make us a perfect little family of four with a goldfish in a bowl and the hope of a dog in the future.
April 26 brought us a beautiful, silent bundle of pink whose life was not going to follow my grandiose agenda. During the days following her birth we were told we would possibly never be taking her home. And then told, she would go home, but we should expect quick deterioration ending in death within eighteen months. When the final diagnosis of PWS was given we were told she will live in constant hunger resulting in probable death in her teens. My world was shattered. I went from producing a child who would change the world to producing a child for whom I could not even satisfy all of her basic needs. I could clothe her: golly we did that!! the amount of pink in our house was like a cotton candy machine at the fair. I could shelter her: cozy and snug in a room with her brother in a house containing a nest of seventeen baby mice hidden in the bowels of the sofa. But the final of one’s three basic needs would never be attainable for this mother, I would never be able to keep her from being hungry.
I am using what would have been her 31st birthday to celebrate her life. I find that although I never, ever squelched her hunger, she had the grandiose life I had once dreamed would be hers. Scroll up and re-read what my hopes for that unborn child had been. She accomplished all of that and so much more. Her life exceeded my plans.
Great scientific discoveries? You know it! New methods of stretching and staining the bands of chromosomes. By age two she had already reached one of my dreams.
Medical advancements? Rock it, Katie-girl! Years of rigorous physical testing and daily injections by my brave girl helped to make growth hormone a common treatment for certain symptoms of Prader-Willi Syndrome.
Compassion to all one encounters? It isn’t often you meet somebody who never speaks ill of anyone. Of anyone. At her funeral a school mate of hers told me a story about how Katie had stood in front of one of the boys who had bullied her for years and told him she forgave him.
Joy and laughter? Abundant joy and laughter. Catching the biggest trout, getting a wild-draw four card in Uno, Cohen’s sweet baby face, Sophie splashing in her arms in the pool, Ellie patting her belly, Jacob dressed in a suit serving tea at her dress-up party, teasing about her social life from Coach, being able to recite all the things which made each of her students happy, just a few examples of all her joy and laughter. Planning her birthdays with Grandpa Jake was a huge source of delight. This year they get to celebrate together again.
Her life shattered my world. I hope you have someone who shatters yours. Someone who shows you how precious every moment is.
Happy birthday, Dad and Katie.
“Celebration is only possible through the deep realization that life and death are never completely separate. Celebration can only really come about where fear and love, joy and sorrow, tears and smiles can exist together. Celebration is the acceptance of life in a constantly increasing awareness of its preciousness. And life is precious not only because it can be seen, touched, and tasted but also because it will be gone one day.” ~ Nouwen
Katie’s gravelights were a birthday gift from somebody who still loves her. Pink and purple solar powered fairy lights.
In the entire history of the universe, let alone in your own history, there has never been another day just like today, and there will never be another just like it again. Today is the point to which all your yesterdays have been leading since the hour of your birth. It is the point from which all your tomorrows will proceed until the hour of your death. If you were aware of how precious today is, you could hardly live through it. Unless you are aware of how precious it is, you can hardly be said to be living at all.” ~Buechner
You would have seen the man with his shoulders hunched forward and his head watching the floor as he rapidly shuffled down the corridor to escort the paramedics to apartment C104, his rapid, gasping respirations revealed his level of stress. He paced through the dining area of the apartment that was not home, he had a confused look on his face as he fingered items on a table; familiar items on a table that had belonged to former generations. The table and the items he could relate to, but their placement in this apartment was foreign to him, they belonged at home, under the window where they had been for years. One of the paramedics convinced him to sit for a few moments and gave him the phone number for the emergency room while keeping an eye on his heavy breathing. I was summoned to the bedroom to assist with getting his wife ready to be taken in the ambulance. Standing in the hallway looking in, I could see her sitting on the edge of the bed with impeccable posture. Under her very thinning tufts of hair was a face smiling at the men assessing her. She had her overnight bag fastidiously packed and with the efficiency of a veteran nurse had her husband’s medications organized and labeled for him for while she would be gone. The men stepped out of the room and without any false modesty she allowed me to assist her in putting on a fresh, comfortable nightgown which satisfied her need for “trip to the hospital” decorum. She took hold of my arm and was pulled to a stand. I held onto her hips, placed her cane in her hand and turned her over to the medics who accompanied her to and lifted her onto the waiting gurney. While taking her purse and overnight bag and jockeying the gurney out of the apartment, the paramedics assured us that the E.R. nurse would phone and give us an update as soon as possible. We were told to rest here, there was nothing we could do if we were sitting at the hospital in a hard, straight chair. I was happy for their conviction and authoritative voice. Once the apartment door closed, the man was unsure what to do and once again fiddled with the items on the little table. After pushing the furniture back to the original configuration, I sat at the dining table and beckoned him to join me. He thanked me for being available to assist them and choked on his words, unable to mask his emotion. Resting his forehead in his palm, he relied on his arm to keep his weary head from plopping to the table. I knew that he valued pride, as only those from America’s Greatest Generation do, considering vulnerability a weakness and neediness an abomination. I told him that I consider them family and that these are things that family members do for one another. I explained that I truly understood how difficult it is to receive help from others and that it has been something I have struggled with for the past twenty-six years, since Prader-Willi Syndrome entered my life. Feeling needy and vulnerable can weigh on a person, until you realize allowing others the chance to be of assistance is a gift to them. Especially during times of grief or trouble loved ones want to help you. What they really want is to take away the hurt and eradicate the source of the pain, but since that is not within their power they want to help in whatever manner they are capable of. For some that might mean lessening a financial burden. For others it is any number of practical, tangible chores that need to be done, such as gassing up a car, providing meals, cleaning house, laundering clothing, and tending to children. Some people’s best way to help is to simply listen, provide a shoulder to cry on or a hand to hold. Everyone has their own best ways to help and their best can change according to the circumstances of need. As Emily Dickinson once said, “They might not need me; but they might. I’ll let my head be just in sight; a smile as small as mine might be precisely their necessity.”
This willingness or desire to be of comfort and help to others is part of one’s character and allowing others to fulfill that desire is part of your character. It is a difficult thing to swallow some pride and let other folks in. By doing so you are giving them a peek into your vulnerable recesses, often areas that are too painful to bring out in the light but when you do, your loved ones benefit. They benefit because they get to help you.
I fumbled my way through some of this with this hurting, defeated gentleman. He was gracious, accepting and grateful, but still broken by the burdens of a body and mind that were neglecting to serve him in the manner to which he was accustomed. I started this tale by telling you what you would have seen, but should share with you what I saw that night. As I arrived at the building’s door, standing before me was a man who amid his chaos and confusion was chivalrous enough to come hold the door open for me. I saw a man who worked himself into a state of anxiety because he could not grasp the idea that a well packed bag took precedence over the urgency of getting prompt medical care. In fact he shook his head with bewilderment as he said to me, “She won’t let me call 911 yet, but her bag is neatly packed! See what you can do.” I saw a memory of a giant taking a dark haired girl by her hands and swinging her in a circle before turning back to tend to the charcoal in his handsome new stone backyard barbeque. I saw the formidable stony face of a man approaching his sports car that was smashed against a tree in a ravine and I saw the movement of his jowl as he watched the dark haired girl whose flesh was whiter than usual walk to him unscathed from the accident. I saw the man who stood proudly and broken-hearted by his son’s casket. I saw a man who was learning how to live in a new period of his life, just like he had done before during times that were not of his choosing. I saw a man whose breathing had returned to normal pat and squeeze my hand while I was talking to him. I saw a man who had resigned himself to the fact that his wife was where she needed to be and he should go to bed. As he said, “we’ll just sit here staring until we annoy each other, there is no reason why you shouldn’t go home to bed.” We embraced. I kissed him on his forehead as I had promised his dark haired girl I would. I gathered my belongings, took the trash to the hallway, closed myself out of the apartment and went to my car in the icy parking lot. After starting the car, fastening my seat belt and adjusting the heater, I looked up at the apartment building; in the doorway, watching to see that I made it safely to my car, I saw a man.
A friend posted this message titled Why Moms of Special Needs Kids Rock!
I responded with what is below it…..
Why moms of special needs kids ROCK!
1. Because they never thought that “doing it all” would mean doing this much. But they do it all, and then some.
2. Because they’ve discovered patience they never knew they had.
3. Because they are willing to do something 10 times, 1,000 times if that’s what it takes for their kids to learn something new.
4…. Because they have heard doctors tell them the worst, and they’ve refused to believe them.
5. Because they have bad days and breakdowns and bawl fests, then they pick themselves up and keep right on going.
6.Because they manage to get themselves together and out the door looking pretty damn good. Heck, they even make sweatpants look attractive.
7.Because they are strong. Who knew they could be this strong?
8.Because they aren’t just moms, wives, cleaners, chauffeurs, cooks and women who work. They are also physical therapists, speech therapists, occupational therapists, teachers, nurses, researchers, coaches and cheerleaders.
9.Because they understand their kids better than anyone else does – even if they can’t talk or gesture or look them in the eye. They know. They just know.
10.Because just when it seems like things are going OK, they’re suddenly not, but they deal. They deal even when it seems like their heads or hearts might explode.
11.Because when they look at their kids they just see great kids.
This is to all the moms I know that ROCK!!!!!!
1. we only do as much as possible, gratefully the rest is done by our wonderful friends and family.
2. we beg, plead, and scrounge for more patience each minute……when necessary we retreat to the backyard or garage or bathroom with a towel over our mouth to scream until patience returns.
3. on 999 someone gives us the encouragement we need to “just keep swimming”
4. we might let the worst soak into our bones, but we bury those bones under lots of flesh, muscle and tough skin and never let the “worst” find its path to our hearts and souls.
5. because others give us their shoulders to cry on, hands to hold, & arms to enfold us and they pat our backs, dry our tears, restore our laughter, and sing us the song that has disappeared from our spirit.
6. hee hee…..I just think this one is ludicrous…..BUT….on a good day we remember our undies and manage to brush our teeth, we might actually use preparation H instead of Crest, but hey, the motion is there!
7. others seem to know we are stronger than we think
8. anyone with a child does exactly the same, just different parts of these things to varying degrees
9. and we love those who attempt to understand our kids and who can point out things that we miss because we are too consumed with whatever we are consumed with at the moment. there are some very good things I might have missed if they had not been pointed out to me by kind, compassionate others
10. It’s the Scarlett O’Hara philosophy….Thank you, Margaret Mitchell for getting me through each day!! ~~I’ll not think about that right now. I’ll go crazy if I do. I’ll think about that tomorrow. After all… tomorrow is another day.
11. AMEN, no argument from me!
This is why friends of moms of special needs kids ROCK! you cannot possibly fathom the impact you have on our lives…..think about it, try to imagine it, then know that if you multiplied that by the largest amount possible it still wouldn’t be enough.
PS….my definition of friends: all of you who support me….including but not limited to, all family members, best buddies old and new, medical and educational people who happen across my path, anyone I run into in the Library, grocery store, pool, or parking lot who gets sucked in by my WOO 🙂