Friday, September 15, 2006


Today Max's friend, Evan, went under general anethesia (always scary with CHARGErs) for a few surgical procedures. One of them (for undescended testicles) Max will probably have to have soon.

CHARGE kiddos often have some genitalia issues. That is the "G" in CHARGE. For example, Maxwell was born with a "micropenis" (very small penis -- but it was soooo very cute) and had to undergo months of testerone shots to encourage growth. Then the testicles are another issue....they often don't descend on their own. There are many other issues that can occur too, but right now this is what we are dealing with.

Evan, we are thinking about you buddy and hoping for a speedy recovery! (If it hurt a lot, please don't tell Max!) And we are REALLY hoping that the urinary reflux procedure will help. That would be so great! Please keep us posted!


Tomorrow night I head to West Virginia for the divorce hearing on Monday. This is the third and *hopefully* final hearing.

The past few days have been crazy busy with last minute preparation for the hearing and more importantly for Maxwell's care in my absence. On top of that extra stress, I gave up a lot of my night nursing this week to make up for all the nursing we will need.

Then yesterday Max's oximeter (monitors his oxygen and heart rate levels) stopped working. So I have had many frustrating calls and visits with our equipment company. Obviously this had to be resolved before I left...and they weren't make it very easy. Now we have a completely different machine for the time being, and I am just keeping my fingers crossed that it works well for everyone and the nurses all understand it. (For those of you who haven't used one before, oximeters can be a little tricky.)

Because of this and similar previous situations with this company, I think we are going to change providers. It will be a major headache as Max has A LOT of equipment and that requires a lot of coordination. Anyway, I could go on and on about that issue...but whatever. It's minor in the grand scheme of things.

This week has simply been an emotional week. As much as I try and push the future of CHARGE aside, it haunts me from time to time. I read more today about the issues (too much to write about here - it would freak you out) and it was really, really scary.

It's funny because sometimes I forget. I simply forget how sick Maxwell is and I forget what the future may hold for him/us. (I think it is my brain's way of protecting me and my sanity!) You wouldn't think with all the medical and therapy stuff we do every day that I could forget for even one moment, but occasionally I do. Or at least I forget the seriousness of it all...if that makes sense. It's really strange. I just think of it as our norm.

Just the other day it hit me that Max is still requiring oxygen. I don't know why, but I was driving up our hill and I son requires oxygen for his body to function properly. Hmmm...and he will require it for many more months if not longer...that just isn't "normal." It just hit me, just like that.

And the other day at playgroup, Max's social worker and I were talking about his medical coupon waiver. She was talking about how extremely uncommon it is for anyone to receive this waiver, but said quite frankly, "if Max doesn't qualify for this, who does?" YIKES, that was another reality check moment! She didn't mean this in a harsh way (she is an absolutely wonderful woman), but she was simply stating the facts -- Max is a very medically fragile child with complex, wide ranging developmental/sensory issues. Another mom (wasn't that comment weird to hear Kristy?) and I both took in the comment and "reality check"...and in our own way, smiled and acknowledged the miracle of Max.

ANYWAY, I basically was just going to post that I will gone for a few days and somehow I have just gone on and on...I best run! I have a few more hours of work, and then I will try and catch a few ZZZ's in Max's room if he lets me! And tomorrow I am going to have fit in a lot of snuggling and hugging...I am soooo going to miss my guy!

Thursday, September 14, 2006


This morning I checked our CHARGE listserv to review the latest information, questions, happenings. Usually I check this daily because it is a very active and helpful list, however I have been just too busy and perhaps I have been avoiding some "reality" about CHARGE.

Well that reality just hit hard...very hard.

The past few days I have been so amazed with Maxwell's progress (AMAZING) and incredibly proud of all that he is accomplishing. And he has been relatively healthy it has been an "easy" week (for us). You start thinking, "wow...this isn't that bad, I can do this."

And then I went to our CHARGE site.

(Don't get me wrong fellow CHARGErs...I love this site and it has truly been my rock through this journey. I don't know what I would do without the support and information and advice from the other families.)

The first few random emails on the list that I opened quickly snapped me back into reality. The future is so frightening at times. So many of these children develop VERY serious behavior issues and that terrifies me. It actually scares me much, much more than the mental or medical issues, because often there is no cure.

One mom was referring to the very violent behavior of her grown CHARGEr (others are experiencing the very same), and another was asking for input on the overwhelming OCD issues her child is enduring. Another very common topic being addressed was toilet training (or lack thereof) in some of the grown CHARGErs...and the lack of friends because our children look and act so differently. And of course there is the barrage of emails discussing the lack of access to quality special needs education, lack of medical funding, lack of community support, lack of knowledge/research funding.

These are everyday struggles for CHARGE families.

In the world of special needs, this disorder quite frankly just doesn't seem "fair." Not only do our kiddos have to fight tooth and nail to survive the early years, but then they must endure a lifetime of developmental delays, overwhelming medical challenges (too many to list), sensory losses (hearing, vision, smell, taste, touch), and extreme behavior issues? This is just too, too, too much for one person.

I do my best to not think too far into the future, because quite honestly...I don't know how long Maxwell will be with us. It could be a day or another 90 years. And why worry about tomorrow when there is plenty to worry about today??? :) But every once in a while, the reality of his/our future scares the crap out of me.

I typically stay away from this topic on our blog. I don't want to scare or overwhelm my family and friends, but sometimes I think it is important for all of us to have a reality check. Look at what our special children have to endure...look at how much harder they have to work to accomplish the simplest of tasks. And we as parents? Yikes. We get over one hurdle just to look ahead at another. As I write this, I find myself trying to catch my is simply overwhelming.

With tears in my eyes, I ask for a special prayer today for Mighty Max and all of his friends. Please pray for peace, understanding, strength, comfort, joy and love for all of our CHARGE families. Ask the Lord to help us understand why this happens to such amazing children. Ask the Lord to please grant us the wisdom and strength to know how to handle the many decisions and struggles of everyday CHARGE life. Most importantly, ask the Lord to keep his loving arms around us so that we never give up the faith and remain steadfast in our love for him and the dedication to our children.

Wednesday, September 13, 2006


So we didn't have a nurse last night, but I behaved pretty well for mommy. No middle of the night suctioning, vomiting or crazy episodes...just a few desats, meds, and milk changes. She was very happy!

But this is what she woke up tangled in this mess! YIKES!

Tuesday, September 12, 2006


My friend Kristy (aka "mommy of amazing, gorgeous Dylan") recently posted this entry in her blog, and I wanted to share it with my family and friends. Her message about gaining new strength and wisdom through her child is beautiful and very true. Our children are the most inspiring and incredible teachers! Hope her words touch you as well and help you understand the journey of a special needs mom...

Assuming the Worst
I read a number of Trisomy 21 boards. Although I do not often respond or write in these boards, I’m a quiet observer looking for new info, updated news, perspectives, and insight by other parents of children with Downs. I recently read an entry by a new parent who wanted to know how other parents “did it” and found their strength. In other words, this parent was struggling with his/her child’s new diagnosis and was scared about his/her child’s future, both immediate and distant. To this parent, here is my response:

When Dylan was diagnosed with Down syndrome, I assumed the would people treat him, what would people think, what kind of future does he have, etc. I'll readily admit I envisioned the institutionalized and brought that to my house. I was naive, I was pessimistic, and I was angry when I saw a 17 year-old teenage mom smoking a cigarette while holding her "normal" and healthy child. I was more than angry, I was scared.

I assumed the worst in people. I had assumed they would be cruel. Dylan is only a year old, but during this short period of time, we have met some amazing individuals inside and outside the realm of the special needs community. Within the community, I found individuals that are strong, respectful, and worthy of admiration rather than the display of indifference I had expected. Just to give an example, Dylan attends "school" every Monday. It's not really "school" but a playgroup for special needs kids where they can interact and receive therapy at the same time. We have a wonderful teacher. "M" has committed her life to teaching children with special needs. She is genuinely encouraging, soft spoken and gentle, and one of the kindest individuals I've ever met. She is also an amazing mother to three children with special needs whom she adopted on her own.

Even the other new mothers that attend school with us are amazing. My friend, "A", who has a son with Charge syndrome always has a smile on her face. She doesn't see the child with so many complex and serious health concerns....instead she focuses on her wonderful child within. "A" exemplifies how wonderful a mother's love can be even through the strongest of adversities. "A" has become a wonderful friend, confidant, and an inspiration to me.

I also met "S". "S" is a mother to three beautiful children, one of which has Down syndrome. "S" runs the local Down syndrome Outreach program almost single-handedly and with wholehearted commitment. "S" has a very busy schedule with her three kids and yet still finds the time to organize a Buddy Walk, put together the Smiles of Life calendar, plan and arrange educational events such as cooking classes for the Down syndrome community...and these are just to name a few things she accomplishes. "S" is also an amazing mother with great faith. She has become a wonderful friend and brings such honest caring to her work (both as a mother and an organizer). I value her friendship, her devotion, and her great love for her work and children. Not to mention, she has admirable time-keeping skills! Phew. She is one of the most selfless individuals I have ever been able to call a friend.

I’ve even come to admire people who I don’t know on a personal basis but have seen in action on a professional level. For example, I have seen people like E from the Children’s Hospital Foundation give countless hours of tireless work to ensure funds are received so that all kids can receive quality medical care regardless of financial status (Uncompensated Care Fund). I have seen medical doctors that address Dylan directly when discussing his treatments with tact and honest care.

Outside the realm of the special needs community, I have witnessed total strangers admire Dylan’s loving personality and friendly nature. I have seen Dylan get swept up in a restaurant by the waiting staff and brought to every table so all the dining patrons could meet him. They had asked to meet him. We can't even go grocery shopping without some fellow shopper playing games with Dylan in the check-out line or making a friendly comment.

So my awful assumptions regarding other people were baseless. If anything, having Dylan in my life has shown me the best in people. These named individuals are just a few we’ve encountered this past year and a half. They are a source of strength and encouragement.

I expected people to identify Dylan by his Downs rather than by his individual personality. Admittedly, there is stereotyping that does exist…one un-named family member is no exception. She calls Dylan an “angel baby”. Dylan is sometimes defined or pre-determined by strangers before they get to know him..I often hear from these individuals how kids with Downs are so loving, gentle, etc. etc. But I have also come to recognize that these individuals mean the best and sometimes these comments provide an “educational opportunity” or “Dylan advocacy” moment. But my fear that people would be cruel has never materialized. For all the horrible moments with people, I can count them on a single hand. For all the wonderful moments with people, they are too numerous to count.

I also assumed the worst in myself. While pregnant, I did not envision myself raising a child with special needs and by having one, had I some how failed? How could the young mother of a healthy child who smoked throughout her entire pregnancy have been better than I who hadn’t smoked at all? What had I done wrong? And most importantly, by asking these questions and feeling my inadequacy, did that mean I loved my child less?

Dylan has already accomplished so much in his short life and against so much adversity so that all I feel is great pride. I love him. I love all aspects about him. I love watching him practice his signs in front of a mirror, I love that his favorite song is the “itsy bitsy spider,” I love that he falls asleep in his bouncy chair, I love that he craves his bath time activities, I love that he will instantly smile the moment he sees the camera, I love that he can turn a stranger in to complete mush with one wave of his pudgy little hand…..I don’t love my child any less. If anything, I appreciate him more knowing that he has overcome so much and yet seems up to the challenges ahead. I appreciate his mere presence after almost losing him to congestive heart failure and chronic lung disease. I didn’t fail by having a child with special needs. I gained so much more! Watching Dylan grow is another source of strength. Every new accomplishment is motivation to learn and push forward.

Dylan's diagnosis brought about a source of strength in me that I didn't know I had. I want people to know just how wonderful Dylan is and I'll do so by any way or means. I joined the local Down syndrome Outreach committee, I attend community meetings, I advocate, I educate....I became a warrior. Like any good parent, I became involved.

So I started my journey into the special needs community and raising Dylan assuming the worst of people and assuming the worst of myself. People were going to be cruel, I was going to be a failure, and most importantly, my son’s future was going to be dismal. Little did I know, I was going to be taught some very important lessons. Through my own education, I would learn that Dylan’s future is as bright as any child’s: he could marry, he could work, he’ll have his own ambitions and dreams, and he’ll be a contributing member of society. Dylan would teach me about people’s abilities to overcome adversity. I would learn to seek the best in individuals. I would learn that there are many sources of strength to continue striving just need to look for them. And I would learn that as a parent, I would be fine. The most important lesson: I would learn to expect the unexpected and not to assume anything. Congratulations on the birth of your child. I can't wait to hear about his/her accomplishments!

Monday, September 11, 2006


I gave Grandma Mary some lessons on my keyboard.

And of course I also had to give her my famous "Max Attack!"

After all of that (could it get any better?), I even treated her to this new trick...SITTING!!!

Opps! My new trick doesn't last very long sometimes! :) But that's ok, I am making HUGE progress these days!!!


On the anniversary of such a horrific day, everyone pauses and recalls their 9/11 story. You can't help but think back to exactly where you were when the events took place...

I was working for a political consulting firm in DC. I remember as I drove to work listening to the radio and hearing about a "small plane, perhaps a helicopter" hitting the Towers. It was odd and everyone was quite confused.

Not understanding yet what had happened, I thought to myself if our day's plans would be changed. My boss and I were to be in NYC for a presentation to Michael Bloomberg, who was running for mayor at the time. We had been working for him for months doing focus groups, surveys, etc. That morning we were going to fly up and give him the latest research results.

When I got to work, some of us grabbed our coffee and headed to the conference room. My boss came around that time too and he wasn't yet very concerned. He was more concerned if we had our presentation ready! He still thought we were headed to NYC.

Soon we realized this was a much more serious situation but we didn't realize how close to home it would be coming.

Our office was in the tallest building in that area and was just minutes from the Pentagon (which is also just minutes from my house). I can't recall the exact timing but I just remember our office getting an emergency evacuation from the authorities. Everyone else left but my boss and I hung in so we could work more. Yes I know, crazy! But I was a workaholic and so was he...and we didn't quite acknowledge the events going on around us.

As I recall, the FBI then alerted us that a plane was headed our direction and we had to leave NOW. It was crazy outside. Traffic was bumper to bumper and everyone was just freaking out thinking we were going to be hit any minute. It was so bizarre. You would hear a plane roar overhead and everyone would stick their head out their window to see what was going on. What was that? Is that "the" plane? Are we about to be hit?

I made it home and then didn't know what to do. I took my dog on a walk and there was this eerie feeling everywhere. Very few people were outside and it was as though danger was just around the corner. It was such a bizarre sensation. There was another family outside who was feeling the same way. We quickly bonded as we talked about our mornings and what was ahead of us. As we talked a plane roared overhead in the eerie silence. I remember all of us looking up and very quietly watching the plane. What was that? It turned out to be a fighter jet (and many more after that) that was trying to protect the airways but each time we heard it, we froze.

After being glued to the TV all day, a few friends and I headed to the Capitol for a candlelight vigil that night. It was intense, beautiful, frightening, extremely sad...and so emotional. People from all walks of life gathered around and sang songs, lit candles, and held hands. It was incredible.

Life didn't return to normal in that area for quite a long time. Every day as I drove to and from work, I passed the Pentagon and was harshly reminded of what happened. I had been dating an FBI agent and he was very involved with the post-attack work at the Pentagon. Needless to say, he experienced things on a daily basis that were beyond words during that process. He couldn't say much but he didn't need too.

And all that "research" we did for Bloomberg and other politicians? At that point, who in the world cared which words or phrases worked with the voters? It was so irrelevant now. It seemed so petty and political, and that certainly wasn't the focus as our country tried to come together. It completely changed the course of our company for quite some time.

Just writing this all down brings back such vivid memories. Such a long time ago...but quite honestly, anything "pre Max" seems like a LONG time ago. I can't imagine if he had been alive that day and away from me at the hospital or in school. I would have been so incredibly desperate to get to him. What would have happened if he had been separated from his caregiver/teacher/nurse? What if someone didn't know he cannot eat orally or that he MUST have his medications at particular times? What about his oxygen? Would we have run out and his little body would have been deprived? I can't imagine what parents were feeling that day...especially parents with special needs children. It must have been absolutely frightening.

Well speaking of special needs, Maxwell is in his little chair beside my desk and he looks like he is about to fall asleep, so I best get the oxygen ready.

As we remember our emotional stories from 9/11, let us not forget the harsh lessons of that tragic day. And let us not forget the fight we still have ahead of us. The terrorist war is not over and we must remain vigilant.

Sunday, September 10, 2006


If you were to look at all of Max's current symptoms, you would definitely say he is sick, sick, sick. But you were to look at MAX, you would think all is well (ok minus the heavy breathing!). He is acting completely normal. He definitely is the master of sending mixed signals.

His O2 needs have gone up significantly these past few days. Not huge, but significant increases from his baseline. His vomiting has increased over the past 24 hours. If the vomiting had started first, you could assume aspiration but not the case. Then last night he went from being majorly constipated to having many, many diarrhea episodes. Who knows!?!

I still am going to attempt church this morning and probably spend most of the time in the nursing room. Hopefully his sweet lil' butt takes a break for an hour!!! :) (We tried church last week but only lasted 15 minutes because he wanted no part of "being quiet," and he can't go into the daycare area.)

Just to make sure all is well, I am going to take him into the doctor's tomorrow for a "review."

Hope everyone has a great Sunday! We are loving having Grandma Mary here with us...she is VERY, VERY impressed with Mighty Max's progress! And she has been the blessed recipient of many "Max Attacks!" :)