Newspaper column #53: A wish to remember, always.

Please click here to read in the Dispatch. Thank you, always.

Please click here to read in the QC Times. Thank you, always.

Dispatch column #18: Help those navigating rare paths.

Please click here to follow the path. Thank you from everyone with a rare disorder

Recognize the preciousness, weep.

“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.” ~Frederick Buechner

 I am so often aware of how precious our moments in life are. Buechner is right, I can hardly live through the awareness of the preciousness, it leaves me frequently in a  weeping state. I have referenced this statement of his before and probably will again because it so moves me. Today my weeping began when I was the recipient of extreme compassion by a woman who could have easily remained disconnected, aloof or unaffected by my story. She had nothing to gain by encouraging my discourse and it was not part of her job description to show me such kindness. It was part of her generous spirit to involve herself and share of herself. Because of her willingness to get involved my heart was touched. She asked probing questions and presented me with various options for dealing with the situation, all while completing the duties she needed to accomplish. Instead of sitting bare-assed on a doctor’s exam table I felt like I was sharing coffee with a friend at a painted kitchen table with zinnias and sunflowers outside of the window, this is how comforting she was. If I was capable of bestowing some sort of Nurse Extraordinaire award, she would be the recipient.

I had so many people showering me with kindnesses this day that my tears were more of a shower than the relenting summer rain.

~A kindred spirit with whom I share the bond of each of us having daughters who need a little extra from us as mothers, and the bond of loving life and choosing to extract every ounce of pleasure and happiness it offers.

 ~My beloved sister whose thoughtfulness and generosity escape from her with every breath she exhales.

a friend whom I have known since Kindergarten making a comment on Facebook that felt more like a hug than a social media entry.

~ An old friend whose emails bring me laughter and comfort always.

~A fellow swimmer inquiring after my daughter’s well being.

~A friend whose door is always open with love and peace waiting just inside the door.

~A non-person entry to this list, a fiery sunset sinking into the river after the rain subsided.

We all want to be complete, strong and courageous, so anytime I realize that I am actually broken, vulnerable and needy I am grateful to those who build me up, hold me up and shore me up with their extreme acts and words of kindness, thoughtfulness and compassion, whether they are a person who does that on a daily (some days hourly) basis or if they are a person who briefly touches my life once or twice a year.

All of you make my days so very precious that I can’t help but be aware. I am living.

Let me tell you who rocks…

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 🙂

For the parents…

 “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!

Do something good for yourself, you deserve it!