Blogs from the Sturge-Weber Foundation Family

Wisdom, insight and reflections from our Sturge-Weber Family.

From My Lil’ Corner of the World . . . On Faithful Warrior Mamas!

From My Lil’ Corner of the World . . . On Faithful Warrior Mamas!

This holiday season (2016) has given more nostalgic emotions than I’ve had in quite a long while. I’ve been reflecting on the AMAZING Warrior Mamas I’ve known over the years, the tears we’ve shed and the tales we’ve told with loads of laughter.  I usually don’t mix business and religion in these blogs out of respect for those who have diverging, worlds apart views, but please indulge me just this once!

I guess the quintessential Warrior Mama was Mary.  Come on, let’s face it, she was a virgin, and lo and behold a mama to be. Can you only imagine? My fellow Warrior Mamas, you can relate to the shock that reverberates as we were told that we were chosen to care for a child with Sturge-Weber syndrome. I don’t know about ya’ll but I planned on that “normal” life much as Mary must have when life took another twist down a road she never planned to travel. It’s all about FAITH . . . how can people navigate this journey without it?

I had a chat with a mom who is what I will call an emerging veteran. She has raised her son almost half way through his journey into adulthood. She’s one of the fiercest Warrior Mamas I know . . . raises donations, battles school related issues, gets THE best medical care, works inside and outside the home
. . .  a real ROCK STAR mama!

Her son has a rare nuance associated with a SWS diagnosis and even with marshaling all her forces, there is no ONE person who can pull out the ole stethoscope and say take 2 pills and call me in the morning! It’s beyond frustrating and like me, she has moments where she wants to fire every expert, teacher, and hand holder along the way . . . BECAUSE THEY JUST DON’T CARE ENOUGH!! It’s a frustration and a strange impotent feeling to know you’ve hit a wall.

While we have made GREAT strides in addressing SWS medical care, research, networking support and so much more for almost 30 years, we are still dealing with a syndrome. Syndrome is defined as “a group of symptoms that consistently occur together, or a condition characterized by a set of associated symptoms”. So we have the common core: seizures, glaucoma and a port wine birthmark, “symptoms” if you will, but there are also so many co-morbidities with varied nuances of expression.

My ROCK STAR mama has hit another frontline in her war on SWS. Her frontline offensive brought back memories of my own battles. I value my tenacity and have faith that, come hell or high water, I WILL conquer what I set out to do…but sometimes God has other plans! I mean REAL ROCK STAR Warrior Mamas have it together!! There is NOTHING we will not do for our babies but there’s the rub, we have to ask “the big guy” because maybe he has other plans.  I wonder if Mary ever felt like just throwing her hands up at some of her son’s antics? Faith – you  just gotta have faith!!

As I’ve learned over the years, at these crossroads, it’s best to exhale. Yep, just be still and know that I AM. It doesn’t mean we give up striving for the best medical care, educational situation and teachers or living situations. It’s just that we admit, TRULY ADMIT, that we are ok, good enough, tough enough and not to be judged. I know when we exhale we reset ourselves and realize, as in my case, I was running to prove to the world that MY CHILD was ok when really I wanted to be ok, NORMAL. Is there anyone in the Warrior Mama chorus now singing PHALLACY? Lol

In spite of all the twists and turns our journey with SWS brings, and how hard we fight the war on SWS, we miraculously prevail, survive, thrive and transcend! I believe my ROCK STAR will continue to make well researched decisions that will enable her son to be happy right where he is and in those decisions she will transcend. In the BLINK OF AN EYE he will be a fine grown up young man that will continue to impact the world around him. “Mary Did You Know?” LOVE that song! You are right where you are supposed to be and you come from a long line of Warrior Mamas before you. Just have faith, hope and love!

May each of you have a blessed and peaceful season!

                                                                                                                                         

 

 

Rate this blog entry:
Continue reading
104 Hits
0 Comments

Bountiful Blessings

The upcoming season of Thanksgiving always makes me reflect on my blessings and the plethora of blessings that I do have. It’s even more bittersweet as I write this because my dad’s sister and brother have just passed away due to varying causes. My aunt had many challenges in her long life and served as a touchstone of support from a fellow warrior mama who knew what I was facing. She would commiserate, encourage and uplift me by commenting that I was made of rich stock and was loved. 

The SWF’s logo - the tree, as some of you know, came from my dad’s motto “Good timber does not grow in ease, the stronger the wind the tougher the trees”. They were a HUGE uplifting help in the early days of SWS diagnosis and a sustaining reminder I can endure. Family, whether by birth or by choice, helps us branch up and out!

They knew as I do, that to get to the root of any challenge we need to nurture ourselves and one another. We need to be vigilant and tend to the impediments that will keep us from thriving. By doing so, we will have strength of character and fortitude to withstand the harshest storms. The Sturge-Weber Foundation (SWF) has extended family by choice around the world. Together we DO survive and thrive and our celebrations are that much sweeter!

 

The two trees of course are representative of life with a SWS diagnosis before and after you reach out to the SWF. Now that you are part of our SWF Family, I hope you find shade from the heat, fruit to nurture, roots for comfort and security, tall branches from which to see tomorrow and a swing from which you may launch yourselves into life.

 

May you have a bountiful and Happy Thanksgiving!

 

Rate this blog entry:
Continue reading
170 Hits
0 Comments