Sunday, October 12, 2008

My online friends...

I love all the people I've "met" online in the last year. Especially people whose kids have Special Needs. Today someone asked if once you have a kid with challenges if you always cry at the drop of a hat from then on! LOL Every single person said YES! I love being able to relate with people that way and not be thought of as crazy! I choke up over very trivial things daily, I cry way more than I ever used to and over seemingly nothing. Everyone talked about how you're just more aware of the challenges a lot of parents face and there is a special bond there that you don't have with just anyone. I know for me I've realized not to take things for granted. When you have kids you just expect certain things to happen and when they don't happen, or at least take a long time to happen, they become much more important.

Some of the things that I've either cried about or gotten choked up about in the last week:

1. A commercial of a little baby laughing hysterically and then falling over from laughing so hard.
2. My friend's little boy, who is over a year younger than Emeric saying "hi" to me.
3. At least every 3rd song on the radio.
4. Talking to my friend Angie about her niece's death.
5. Thinking about my SIL buying underwear for my nephew.
6. Hearing of a couple who are trying to get answers for their sick daughter and having no luck.
7. Watching Emeric give me "the look" after I've told him no and then either turn around and do it anyway or wilt to the ground from a broken heart.
8. Reading about the "inchstones" that kids with special needs have reached recently.

Some are serious, some are silly, some are reminders of the milestones Emeric hasn't reached yet. Things become much more meaningful when you read lists of what parents are thrilled that their kids have learned to do in the last month. Here's just a short list:

"He is starting to have the strength in his arms to push up a little." (This little boy is almost 2)

"She moved her feet in her stander today!" ( This little girl is 5)

"My baby can sit herself up!" (This little girl just turned 3)

"He'll lean his face close to me so I can give him a kiss!" (This is a little boy whose mother was told he had such severe brain damage he'd never understand them.)

"He stood all by himself for 3 minutes!" (This little boy is almost 5)

Those are HUGE accomplishments to those parents! I watched the video of the little girl who moved her feet in her stander and I cried. She moved probably just a few inches but her mom was thrilled and the excitement in her voice was so touching! These are all examples of kids with physical delays and that's a bit easier sometimes to see milestones being met but for lots of parents getting their kids to use a spoon is a huge victory!

I feel so blessed that Emeric is not severely physically delayed like these children and I'm reminded often of how truly healthy he is. And other times, like a few I posted above, I realize how as he gets older his delays are more obvious and other kids notice things and I start feeling really bad for him.

A friend of mine said her 2 year old little boy prayed the other night and included Emeric in his prayers and asked God that he would feel better. Ha! I'm going to tear up again just writing it! LOL Isn't that sweet? And yet it's a reminder to me that kids notice his differences.

What's so interesting to me is that the parents whose kids struggle to even sit at 5 years old are much more thankful and touched by what their kids can do than parents whose kids have always met every milestone they were expected to meet.

I found this poem and wanted to share it with you. It would help first if you read this because there are some parts of the poem you might not understand otherwise. There is a lot here I don't relate with. Things like feeding tubes and heart surgeries and chemotherapy. But there are many things I do relate to.

To You, My Sisters

by Maureen K. Higgins -

Many of you I have never even met face to face, butI'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 wellworn. You are stronger than you ever wanted to be.Your words ring experience, experience you culled withyour 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 anyother sorority, we were chosen to be members. Some of us were invited to join immediately, some not formonths or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms,and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, bloodtests, 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 ofchildren with special needs.

We are united, we sisters, regardless of the diversityof 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 psychology.

We have taken on our insurance companies and schoolboards to get what our children need to survive, andto 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 wasadvocated by the person behind us on 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 andsip red wine in Italy. We've mourned the fact that ourtrip 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.

Oh, and on a completely different note... That infection in Emeric's finger? Yeah, it's still not healed. And now he has the infection in another finger. I'm really convinced now that he has the strep infection that was going on a while back around here. Way too coincidental that he got the infection in both cuts on different hands. And they look the same. The other hand now the skin is starting to slough off as well and looks the same. And, can you believe I have it too! Yes, I have two sores UP MY NOSE! I am not kidding! And they HURT and they are not healing! So, I'm assuming I'm going to have to take Emeric back in and get more antibiotics which sucks and I'm probably going to need them too!


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