A SPECIAL SORORITY

A friend in our CHARGE group recently posted this poem...and oh how it is so true. Just today I was out and ran into a group of special needs teenagers. I quickly wanted to embrace one of the moms and talk with them. I wanted to say "we are one of you" and share stories. What is funny is that I noticed the same mom noticing me and Max. There seemed to be an instant connection without even talking.

I feel incredibly blessed to have met so many incredible, amazing, outstanding mothers in the special needs community. Women I would never have met without Maxwell and now I cannot imagine my life without them. Thank you to each and every one of you for being my special "sorority sister." (Sure is a lot different than my college sorority...just wild and crazy I guess in a different way!!!)


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

WOW! WOW! WOW!

How can I even begin to describe how absolutely amazing today was??? Max decided to reach yet ANOTHER milestone. YES ANOTHER!!! He is on quite the roll these days! Soooooo exciting! :)

Well, I'll just let Max tell you about it. Take it away Max.

"Ba Ba Ba...Na Na Na...Da Da Da..."

Yep, that about sums it up. Mighty Maxwell, the boy with significant hearing loss, major delays and just about every medical issue, decided today that he would like to start babbling!!! Incredible, absolutely incredible!!! Once he started, he hasn't stopped! It is the most beautiful voice I have ever heard! We have been working for so long with oral and speech therapy, and finally it clicked! WOW! WOW! WOW! :)

Some kiddos with CHARGE and/or those with significant hearing loss and other serious related sensory/facial palsy/delay/palate issues (all of which Maxwell has) are non-verbal. Often times, it just depends to what degree. This has been an incredible fear of mine...more than I can even admit truly to myself yet at this point.

I know that this babbling doesn't mean he will definitely talk one day, but it certainly is a step in the right direction! Sign language is going to be a major form of communication for Maxwell, but if he can talk along with signing...WOW, I will be thrilled! :)

Every family with a child with a significant hearing loss has to make a decision on what type of communication to pursue. There are many choices and every one feels quite strongly about their personal choice. Maxwell and I (we met over coffee a few months back and made our decision!) are pursuing verbal as our primary language with sign as our secondary. I am *hoping* we are able to meet this goal someday!

Right now I am just going to focus on the positive and praise God for giving me this HUGE sign of encouragement. We needed this, and I am going to cherish each and every "ba ba" Max throws my way! :)

We went over to Eliz's tonight to show off and Jackson was soooo funny about it! He was jumping up and down on the couch saying "Today is a special day because Max is talking AND sitting!!!" So cute that he catches on to our excitement! I love how he loves him.

And just as Jackson indicated...if the babbling news isn't exciting enough, Max is also making great progress with sitting! We are pushing hard to reach this milestone within the month! Can you believe it!?! All of a sudden, Maxwell constantly wants to try and sit. I will lay him down and he tries to crunch back up. It's so funny! He has spent the first 13 months on his back and he is ready for a change! :)

Ok I am just a little giddy as you can tell! :) PLUS I got Mighty Max some new clothes today to compliment his new big boy changes! What a wonderful day! Ok, I admit it started off crappy having to get back into divorce paperwork, travel arrangements for the hearing, etc., but wow, does Max know how to turn a day around or what!?!?! Yikes, he is good!

Soooooo I best run, it's now midnight...I started this post a few hours ago but Max's machines kept calling me! Need to head to bed and dream about what milestone is next!!! :)

Tomorrow we have speech therapy and while I always enjoy our therapy sessions, I am on pins and needles waiting to show this off to Max's therapist! I called her today and had her listen on our cell phone...she was very impressed with our lil' man! Plus she loves laughing at how excited I get! :)

* If you want to call and hear Maxwell's beautiful babbling, please do! :) If you haven't noticed, I am super excited and just a wee bit proud!

THE VERY LOVED MOBILE

During Max's hospital stay last year, another parent (Carter's daddy) recommended this mobile. He said that his son enjoyed it immensely and maybe it would bring joy to Maxwell too. Boy did it ever! This mobile has been with us through thick and thin...and it has been absolutely amazing to see its involvement with Max's development.

I remember vividly when Max first started *noticing* at the mobile. At the time, we didn't know about Max's vision and his interest in the outside world, so we were all very excited! Then a few months later, we noticed Maxwell was watching the mobile go around and around. Wow, that was another milestone! When he came home months later, he made his first attempt to reach for the mobile. You can only imagine how happy I was that day! And in recent months, he has taken that up a few notches. He loves, loves, loves to grab the animals. However, with his newly developed strength, he now wants to pull himself up using the mobile. That has caused some problems and finally resulted in a "victim" last night. He was using the mobile as a pull up device and he came falling back down when it broke off. Opps! Sorry lil' animal!

What is soooo funny about this mobile is his addiction to it! It is the only toy he will cry about if you take it away from him. I will go to pick him up and he will NOT let go of the mobile. And if you pry it out of his hands, he gets pretty upset. He gets very excited to be picked up, but he simply wants to bring his animals with him.

My sweet, strong and beautiful Mighty Maxwell, I hate to tell you this but I think the time for the mobile to come down is approaching quickly...enjoy your final days together. :)


THE GUILTY PARTY
Doesn't seem too worried about it, does he?



















THE VICTIM
There should be a chalk line around this poor lil' guy.

GREAT PLAYGROUP!!!

This morning Max had his playgroup and he did soooo good! He is getting more and more used to the group and his personality is shining through. Lots of smiles for everyone and a few Max attacks for me! His sign teacher thinks he is paying attention to our signs...who knows? But I love hearing praise on Mr. Max! And he participated again in snack time by sucking on a watermelon. He then bit off a chunk with his tooth and almost choked himself on it. Oops!

Then we tried him in the "sensory tub"...a baby pool filled with beans. He really liked it, which was VERY encouraging! A few of the kiddos got in with him and he tolerated everything really well. I worked with him on sitting a lot too and he is making wonderful progress!

So proud of my lil' man!!! :)

HOPEFULLY ON THE MEND

I *think* Max may be on the mend...hopefully! I started him on Pedialyte yesterday and am going to slowly reintroduce his formula this afternoon. Hopefully the diarrhea does not return. The other issues are still here...but overall, he is doing pretty good. We have a doctor's appointment tomorrow to get everything checked out and have some tests run. Hopefully he will have some answers on the heart and medication issues.

And I am super excited to get his latest weight. All of a sudden it seems like he has grown out of all of his clothes! YAY! :)

QUESTIONS WITHOUT ANSWERS

I just don't like having answers. Period. And every day with Max comes another day of questions without answers...and boy is that frustrating. Not only is that my personality, but it also is out of absolute adoration and crazy protective love for my son.

I don't want to be too overzealous with his treatments, but I also don't want to let something slide that needs medical attention.

We are experiencing one of those times right now...a major QUESTION with no answers. For the past few days, Maxwell has been experiencing a slew of random symptoms (respiratory difficulties, frothing spit, increased mucuous, major diarrhea, etc.) and the only diagnosis that we (my nurses) can come up with is congestive heart failure related issues.

His cardiologist changed around some of his meds about a week ago and we are questioning whether that is causing these symptoms, or is Maxwell simply sick...AGAIN? I think it is a combination of both.

His symptoms seemed to worsen last night. And what is frustrating is that I was with some girlfriends scrapbooking (so fun - thanks everyone!) and the nurse didn't call me. I even checked in several times and no mention of those issues. Then I come home and the night nurse updated me and I was freaked out. Major oxygen issues, vomiting, diarrhea...the works. I was pretty frustrated that I had not been notified, I would have come home immediately.

So anyway, some of the problems subsided overnight but some didn't. And today is Sunday and I would rather not bother his cardiologist on the weekend (I might give in and do it anyway...sorry Dr. Johnston!). It's not an emergency but at the same time, I don't like waiting for answers. I know patience is a virtue and all...but it has never been a strength of mine. :)

The problem with him "just" being sick again is that he is still on prednisone (steroid for lung issues last week) and so he should really be at the top of his game in the respiratory department...but he's not. He is chugging away like a super speed freight train and his lungs sound crappy to boot.

I am going to take him in to the local emergency ped's office today and check on at least the more immediate problem... MAJOR diarrhea. He went through an absolute terrible case of it last week and quite frankly, his cute lil' behind was so raw I thought it might just fall off! He was in soooo much pain...so sad! :(

It seemed to be getting better, but yesterday it went from bad to worse. In a twelve hour period, he had EIGHT poopy diapers. Crazy! I am going to go and get some Pedialyte and bottled water...just to make sure his electrolytes are ok and also to make sure nothing in the tap water is bothering his system. We'll see.

Another day...another day of questions without answers! But he is smiling his way through all of this...you gotta love that! No matter what, Max is a charming lil' fighter and he'll fight his way through this too.