I am Julie, Daniel's Mom. Daniel has Polymicrogyria. His brain is deformed, caused by a virus in utero. He has seizures, developmental delay, motor dysfunction, severe reflux, respiratory problems,etc He is unable to speak, eat by mouth, or walk. Visual strength and a gentle touch are his means of of communicating. Daniel has strengthened my belief in miracles and faith. Enjoy. Share. Follow. Help. Laugh, Pray, make a new friend.
Will I remember the way it feels to step from dry coolness in a small condo, out into a warm, humid, sunny walk way lined with mini palm trees and other tropical plants? To walk across the driveway with the squeek of my flip flops and the smell of my sunscreen? Will I forget the way I always tried to see as many geckos as I could, those cute little lizard guys who live all about the complex just scittering and scattering about? When you come home from vacation in South Western Florida to the "north we know".. its almost like someone plucks you from a dream and drops you harshly back into a cold pool, where there are no palms, no geckos, no amazing vegetation and spectacular sunsets.
Will I remember being able to say, "I'm going to the pool" and just go over to it?" The white powder sand on the beach, and the 88 degree water that envelopes you in a salty floating paradise under a blue sky, will they fade away into merely photos? Probably.
What I will never forget is the look on Daniel's face as he is mesmerized by the plane taking off, by the feel of the Florida heat, by the warmth of the ocean, by the lights in the ceilings, by the soft waves coming in and out leaving so many gorgeous white shells. And Daniel's face as John carries him into the pool, wraps a pool noodle around him, and just floats around. That look of joy, comfort, freedom, relaxation, and love. Secure in Dad's arms he lets his body float, kick, and splash. He bares a farmers tan from his rash guard shirt, and sports a few bug bites on his toes from rogue biting flies that get us all. That face so simple and gentle soaking in the world with his eyes and noticing intricate details of a typical day that to him are amazing.
Seeing him happy is the reason why we do it. If it were not for family who love us, we wouldn't be able to witness that joyful face in a place so different and so stimulating. It is just pure happiness in the moment. Daniel is pure happiness and truth in the moment too. The rest of us are all wrapped up in our complications. Daniel is just enjoying life as it comes and presents new things for him to experience.
In a white soft leather recliner, that swivels 360 degrees, I'm sitting with my feet up looking out a window at Florida. Daniel is sleeping in a crazy but happy position in the bed I just got up from. When we travel one of the biggest challenges is where do you put a 16 year old disabled child to sleep. Gone are the the days of bed rails and pack and plays. Usually he sleeps right up next to me. Because he wants to cuddle up and be close. Daddy is on a trundle bed at the other side of the room. It's like a camp. The other kids get to have their own rooms and that's ok. They are getting older now and need their privacy.
It never ceases to put a numbing surreal feeling in my brain when I try to envision my future. It includes the three of us, in this camp, or some other camp, so that I can take care of Daniel. A far cry from the happy retirees I see down here in Florida enjoying their grandchildren, or just strolling hand in hand down the beach. Our nest will always include the one baby bird who has no wings.
Florida has become, to me, a place of obsession. I love the weather, the air, the water, the people. Handicap spots are plentiful, and people are patient. Beaches now offer beach wheelchairs, so Daniel can go take a walk down the beach, or just get right up to the warm water of the Gulf of Mexico. The roads are lined with palm trees and the homes are very solid structures full of ceiling fans, tile, and Florida flare. Sarah and I walked down to the beach with Daniel last night, I'd say it was about two blocks from this condo we are in. He smiled and looked with fascination at everything he saw. It is a far cry from Sandy Hook, CT where we can not walk safely on our own road.
Coffee tastes better for some reason when I am rocking in this chair looking at some species of palm tree that has grown about 5 feet taller in the 6 or 7 years we have been bring Daniel here to John's cousin's condo.
I don't fear for his health and well being in this place, after all, its Naples Florida. There is a hospital near by, and a doctors office on every corner of some sort.
Sarah and I have been engrossed in episodes of HGTV all week and all I can say is that there isnt a show on that channel that I don't love. I would just like to see an episode where they have to accommodate for a disabled child.
As my moment of peace is drawing to a close, I will add a few pictures to this post and simply end until later. Daniel has started making his "hey I'm awake in here" sounds, and he needs much care in the morning. This white leather chair is my very favorite item in this entire condo. Even if my moments in this place of peace are few, I will say that I thoroughly enjoy them. Coffee just tastes better in this chair.
I've been a special needs Mom for 16 years and 6 months. Life has bound and tied me to a world of emotional intensity that I never really imagined, planned for, or even knew existed. My son is a darling boy, he fills every single day with love and sweetness, his gentle eyes and joyful smile just let you know that he is OK.
But here's the "thing". I am only human. I also have two other "normal" children, Sarah and Thomas. Both of my children have had wonderful academic records, been involved in everything from brownies, to dance, to theater, to orchestra, to jazz band, to baseball, football, soccer, basketball.... And as they age and grow I proud just like other parents. The thing is, I have this incredible appreciation for the fact that kids have the ability to speak, walk, sing, dance, laugh, and just be wonderfully independent. My biggest problem emotionally is the "thing" or whatever name it can be called when suddenly I feel this overwhelming sense of absolute sadness. It happens quite randomly. I can't control it. It is as if it is a release of suppressed feelings in the midst of "trying to be like every other parent". But I'm not.
On June 10, a Tuesday evening, my husband and I attended the Newtown High school Marching Band meeting for parents and students. Thomas is ONLY going into 8th grade but he is allowed to participate. He is so excited, of course, being the blossoming talented musician that he is. And as I sat there, listening and watching the kids, so full of excitement just from being together, it brought back memories of my own Marching Band experiences when I was a kid. John and I were thumbing through the parent manual, feeling completely overwhelmed, but wanting to support Thomas.
And then, it happened. The "thing". Tears welled up in my eyes and my heart started to pound. I can't stop the tears, so I have to let them pour. I try to hide and slouch down, but my husband keeps whispering "whats wrong? are you OK?" I wave him away and say "just give me a second". Because I am thinking of Daniel. Daniel who will never march in a band, sing a song, play a cello, or write a story. Being inside the high school auditorium infused me with the sounds and sights that reminded me of the 4 years we spent watching our daughter perform and develop as a beautiful young lady. Graduate, and go off to college where she is now thriving. Daniel WOULD have been a senior next year. He WOULD have been planning his future, applying to colleges, taking his SAT's and learning how to drive.
I am of the opinion that it is OK for us to have these moments of sadness because they are as real as breathing. There is a certain amount of permanent loss that perpetuates as time and its events just passes Daniel by.
By the end of the band meeting, I had shifted my brain right back to Thomas where it belonged and met some other parents. These parents don't know about Daniel, most of them, so its nice to just be one of the crowd. When I start showing up pushing the wheelchair, people treat me differently and the kids stare. It's not a bad "different", but any mother of a special needs child who is in a chair, on a feeding tube, and makes crazy weird noises can attest to feeling "different".
Sometimes I have had these episodes at dance recitals, watching plays, hearing concerts. I believe that it is because I have a wish deep inside my inner soul to know what Daniel would have enjoyed doing, and what Daniel would have sounded like if I have never acquired this virus that caused his brain not to form. He started out just like any other baby, until the CMV virus entered my body and his and changed the course of our lives forever.
Yesterday was June 12, 2014. One of Daniel's classmates, who he has been with since he was three years old, "graduated" from the school system. She is 21 and can no longer attend. The school had a lovely ceremony and reception for her, her name is Emily. It was a beautiful moment, profoundly happy and sad at the same time. The slide show pulled up picture after picture of a group of kids in wheelchairs, Daniel included, and over time the group began to diminish. 9 months ago we lost our beloved classmate Ryan when he passed away unexpectedly. Emily graduated, and now there is only Daniel and Lindsay.
I wasn't expecting to cry as much as I did, but the reality of what Daniel's limited life really is shows up in those slide shows.
I must conclude with something that will change the depressing nature of this post. The love in that graduation ceremony yesterday was something that you could feel in the air. There were tears in every single eye, and Emily's Mom is one of the most incredible special needs Mom's I have ever met. It was a beautiful testimony to what these kids teach us, and show us. It was a special ceremony to joyously celebrate the life of a child who has survived and thrived despite so many odds. And her brave and dedicated family who have dealt with so many challenges.
(THIS VIDEO IS A COLLAGE OF DANIEL THROUGH THE YEARS)
I have to have these episodes, its just in my nature. It's just who I am. And I never claim to be super woman who can endure this life with the strength of a giant. I'm just Julie. Failing and succeeding just like everyone else. The difference with my life as opposed to other normal parents, is that I am "literally" keeping my son alive. That is a role I have gladly accepted, even with all of the sacrifices that it brings. I am entitled to a good cry. It cleanses out those feelings.
" Hey Julie have you filled out that paperwork yet?" No, not yet child. This is why. I am going to run through my typical day. Having caught an article recently that stated most people have approximately 5 hours of leisure time a day, I just didn't see how that was possible when you are the Mom of a disabled child.
So here goes. Ready set go. Starts at 4am when Daniel typically wakes up laughing. I go to his room, change his diaper, and settle him down. Back to bed if I'm lucky. If not, then coffee is on. Take the dog out for his morning business. Help Thomas get his breakfast and get onto the Middle school bus at 6:30am.
Come back inside and feed the dog. Unplug Daniel's feeding pump from his belly and set up a fresh bag for the day. Get his morning medications ground and dissolved, give a breathing treatment if needed, give medications through the g tube, also known as the Mickey Button. Cute. Get Daniel changed again because he goes alot in the morning, then get him dressed for school. Lift him into the wheelchair. Buckle, snap, and velcro him into the chair that holds him into safe positioning. Get the tray and put it on the wheelchair. Make sure the back pack has his AFO's, immobilizers, and hand splints. Brush his teeth carefully, wash his face, and then its off to the bus at 7:30am. Bring Henry also to the bus. Bus aide gives Henry treats, that's a thing we do.
After Daniel is safely ready and launched, its back into the house I go. Clean up dishes in sink. Throw a load of stinky Daniel laundry into the washer. Scoop the cat box and feed the cats too. Go upstairs and shower, make sure I have something that looks half way decent to wear. Hair gets blown out and styled sometimes. My face is lucky if I put on makeup. Go through bills to make sure I didn't miss anything. It happens. Write down phone messages from yesterday with the intention of calling back later, but never get to it.
Usually I have to then drive to Newtown Middle School and drop off the Baritone Sax. Get over to AllState in Monroe and do my best to work until approximately 3pm. This is on a normal day. If it were one of Daniel's MANY doctors visits or hospital clinics, I don't make it to work. For the purposes of this blog post, I was able to work at AllState for several hours.
Leave Monroe at 3:00pm. Get to Newtown Middle School to pick Thomas up after Jazz band ends. Get Thomas home so that he can get started on homework. Walk the dog. Run a vaccuum to get up the cat hair. Have a conversation with the nurse about how Daniel's day was. Review his medications to make sure that something doesn't need to be reviewed. Plan something, anything for dinner, and on a good day actually prepare it. Or go with deli sandwiches, whatever. More laundry. Feed the kids. Clean up. Do motherly housework until 5 ish. Feed the cats, feed the dog, and take the dog for a walk.
Then somewhere about 6:30pm Daniel's night time regimen begins. Lets assume I have no helper, because that happens. So then I carry Daniel into the shower, and bath him (his lift motor is broken) and get him all clean and ready for bed. Get the nighttime meds ready, breathing treament and vest treatment, and get the pump set for night feeding. Daniel gets g tube fed around the clock at a slow rate. Settle Daniel into bed. Go into the kitchen and make formula, just like you did for babies. Boil water, and mix the Neocate Jr. to make a supply for the next day. Put on a favorite movie of his, or just something sensory like the lava lamp or the puppy that makes stars on the ceiling.
This is about the point in my day that I finally stop and sit down in the recliner in Daniel's room. Maybe check out facebook, or cringe over my budget, or go onto you tube, or write, or just go through email. Then at about 8:30pm Henry goes out for his last business before bed. It's upstairs, put Henry in his crate. Get the monitor on, and by my bedside. Take my medication. Snuggle into my bed. Turn on the lap top, start writing but then experience the exhaustion swallow me up. That's usually approximately 10pm.
When did I have 5 hours of leisure time in there? I have an application that I have needed to get filled out and mailed. I read an email asking me to fill it out and send it. I had every intention under the moon to do that, but finding any time to work on this. "Fill out that application and send it in." I will. I will figure out how to work it in. At 4am when Daniel jolts me out of sleep, I'll try to do it then.
I often get to the end of my day and realize that, crap, I didn't fill out a form, call a medical supplier, schedule an appointment with a doctor, pay a bill. And my feet hurt, and I'm tired. I'm sleep deprived. And the cycle begins again. Sometimes with different places to be and things to get done, but never stopping or slowing down and never doing anything to bring personal pleasure to me. Usually.
It's a whirl wind. Much like when you have a newborn precious baby. But bigger, much bigger diapers.
The application I have to fill out is going to have be on the tomorrow list. If I can stay awake long enough to write one.
