Monday, May 11, 2009

The Day after Mother's Day ....

Yesterday, when I posted "Invisible Woman"I just knew it would so not be applicable to some of my incredible blog friends.Friends, who's journeys were far more complex than feeling simply invisible.You see,I find I have my foot in the doorway of two worlds these days.Much like many of you who come here daily and still yet,there are others who come here,who spend the majority of their days strictly relating to and living in only one of these worlds.For me,one world finds me trying to do my best in the role of a blessed mother of 5 typical children,while the other world finds me equally blessed but often not so gracefully trying to navigate my way through as the mother of the amazing Miss Zoey.On some days these worlds seem to be complete polar opposites.Yes,they are of course filled with joyous similarities but simultaneously they are also filled with glaring incongruities.Tonight I found the following on a dear far,far away friends blog.It spoke all the things I wished to say to accompany "Invisible Woman" but lacked the eloquence to speak them.Thank you Claudia for posting this.Claudia and I started commenting and corresponding over a year ago.We have tried to support each other consistently over that time and I feel often ,that I have failed to give to her all I have wished, to ease her hearbreaking journey.I have at the very least, tried.In the end,regardless of our separation by a very large body of water,I hope she knows I love her and feel honored to have been welcomed and embraced into her private and personal journey.Before you read on,an update on Zoey which really amounts to not a whole lot of an update.I forgot my camera the last few days,so no pictures.If there were you would possibly mistake her for Casper.Yes,that familiar transparency has over taken her darling face.No transfusion yet.She did however receive platelets.Poor babies lips started bleeding badly.She almost look as if she had permanent ruby colored lipstick on.Sad and not so pretty.Other than that she continues to find her way.As do I.I am struggling this round but I leave that for another post.Keep those prayers coming please.

Thoughts of a Mom

By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers.We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.But we, sisters, we keep the faith always. We never stop believing.

Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.


Victoria Strong said...

That is beautiful and poignant. Thank you for sharing this. Thinking of your sweet family.

stephanie said...

Tears in my coffee, yet again.Love and extra,extra prayers to all.

Lacey said...

That is so beautiful. How is my sweet Zoey? Ray checks on her daily. Praying she continues to fight like a champ, and you don't lose your mind in that place, I know it tends to happen. Hugs from me and Jax!!

Junior said...

Ahhh such beautiful words.
Keeping Zoey in our prayers.

Michelle said...

My sweet is almost done and you will find yourself home again with Miss Zoey and the rest of the dear Needhams looking to the future, looking to brighter days in the sun, on the beach, laughing, relaxing and feeling that strength of another obsticle gotten through, another journey over, with so many to begin...soon, my friend, soon!
Yes, 5 days and counting...I am so excited I can hardly wait. We'll be in Saturday afternoon. Email me or call when you can to let us know when would be best! LOve to you my dear friend!

Ruby's Mom said...

Thank you for sharing,it made me cry.Still praying.

sturpin said...

oh my goodness. I am crying here in the NICU. What an amazing post. What would I do without the internet? Thank you for being my sister.

Prayers for your current day and chemo round.

Sarah Boesing said...

Hi, Heather,

I know you don't know me, but my name is Sarah and I'm 19. I came across Zoey's site through another child's, was utterly captivated by the grace, strength, courage, and resilience exhibited by your whole family (as so many others have), and have been following her journey ever since.

I just had to comment today and tell you thank you for posting that, and thank you for taking on such a responsibility. I say that to you and all of the other moms who take on this role of "mom" to kids like us.

I was born prematurely (as the oldest of five children), and was diagnosed within hours of my birth with a terminal kidney disease. I was given six months to live without dialysis or a transplant in April 2001, only to have a kidney donated to me from a family friend at church on August 30, 2001. 5 years post-transplant I developed common variable immune deficiency (CVID). I underwent treatment (weekly infusions) from November 14, 2006 to April 26, 2009. I am now 2 weeks into life post-treatment, and am still finding my way in adjusting to this new place.

I know firsthand how much us as "special needs" children lean on our mamas, and navigate these two worlds with them as our guide and constant, most faithful companion. (For me, my two worlds are that of kidney transplant/immune deficient patient, and that of college student.)

Thank you so much for posting that, and for so lovingly and willingly assuming that role.

God bless!

scrappy quilter said...

That is one of the most poignant posts that I've read in a very long time and so very, very true. Continued prayers for your sweet Zoey.

Kele said...

I am sure even as Casper, little Zoey is beautiful. Would love to see some pictures soon, would love to talk to you as well... perhaps we can make that happen this week.
Love ya!

Tammy said...

Amen, Sister. Amen. Lots of hugs. Lots of love.

Lacey said...

Hows my Zoey girl? I wanted to ask you what your neuro's name was again. Someone asked me if I'd heard of Don Shields. Isn't that who yours is? I think I will look him up because if two people mention him he must be good.