"Lucky of the Un-lucky"

Below is a poem that I've copied and pasted from my friend, Amy's blog (www.maxupdate.blogspot.com). If you haven't been following Max's story, it's definitely worth your reading time. His life is such a blessing to all of us who enjoy the privilege of knowing him-- even if only through his wonderful Mommy's thoughtful account of his struggles AND triumphs. This poem touched my heart so much. I've added my thoughts below.... (Grab a cup of coffee-- this is a bit long.)

To You, My Sisters
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 physiatry.

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 tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

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.
By Maureen K. Higgins

I can so relate to this sentiment-- even though I'm not an "official member" of the special needs community. My Isabel turned out to be "one of the lucky ones of the unlucky," as her surgeon pointed out. After the ultrasound told us of her condition (Congenital Diaphragmatic Hernia-- CDH), I prepared myself for every possibility-- even the possibility of her not beating the 50/50 odds of survival. After arming myself with enough reliable information, I prepared myself for feeding tubes and oxygen tanks and learning disabilities (due to possible brain damage from lack of oxygen at birth). I was so willing to accept ANYthing because I so desperately just wanted my baby to have LIFE. (And I still feel that way.) While I had the utmost faith that God's will would prevail, I couldn't be sure of what His will would be. Sometimes "His will" doesn't really match what we desire.

When Isabel broke records for "speedy" recovery, was hospitalized for the minimal amount of time for babies with her condition, and only had to have the feeding tube for six months; while I was thrilled, I was still preparing myself for the other shoe to drop. I kept watching and waiting for some "symptom" to crop up. I still think that way sometimes. I don't know when that will go away-- eventually, I hope. I've taken her to the doctor more for "the sniffles" over the past 11 months (since being discharged) than I have taken Abby over the past 3 and a half years! I'm a little paranoid.... But, Isabel is now able to tolerate whole milk, as well as most "normal" finger foods, and she LOVES cheese! :~) So, we've crossed yet another major milestone off our list: "eats table food."

I told Amy (Max's mom) that my whole perspective on the "special needs community" has changed. While Isabel only had to endure 6 months of the feeding tube, and I only had to endure four months (after two months of hospitalization) of the "stares" and sometimes-offensive questions in public (while most people were just curious and quite compassionate), I feel so priveleged to have gotten a "taste" of what it would be like, without actually having to officially "join" the special needs community. I hope that doesn't come across wrong. I really DO feel as if it was a God-given GIFT for me, personally, to have gone through Isabel's ordeal. Before this whole experience, I was really unsure of what to do when I would encounter someone with a special needs child. I would feel sorry for them and would wonder how in the world they managed with such a burden. And, now, I know how they manage: with grace and dignity and a heart of gold! I now realize that parents of special needs children are CHOSEN for the job, for some reason. It's not random. But, then again, nothing is....

Okay, I don't want to continue to ramble, so I'll close for now. Just know that I'm still learning along this journey. And, I'm glad that YOU have chosen to be a part of it with me!

God bless each of you today--

Lori