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.
It's late and I'm tired. My right hand, wrist, elbow all hurt from too much texting and typing I guess. I've found social media and internet groups to be such a place of connection and comfort. As you can see from the many video posts I have put up lately, I am on You Tube and trying to build a channel, mostly for Daniel's benefit, but really I am not sure where I want it to go. Sometimes you have to throw an idea to the wind and when it comes back at you its completely different.
I never thought, for example, that I would have people privately emailing me for emotional support with all types of problems. I never realized how many people are hurting and suffering with fibromyalgia like I am. I never dreamed in a million years that I would ever get 10 subscribers, and we now have 89.
I am just Julie, the somewhat odd and eccentric Mom of three children. Living in Sandy Hook CT is a struggle financially, and someday I pray that we will have the ability to move Daniel south and OUT of this expensive place with harsh winters. 20 years ago I would have told you my future will look like "me as an executive and owning a ski house in Vermont." That ship has sailed to another port.
My young man who can't speak. My young man who is so quiet and so simple, but yet always leaving me wondering HOW much does he actually understand. Its so very hard. But when he holds my hand with his soft hand, I just know he is there with me. Whatever that means.
Please know that for any Mom to have a child with special needs is so very difficult, but that doesn't mean that the Mom is a super hero, she still needs hugs and friends.
It's late and I'm tired. Positioned ergonomically horrible in my bed with my laptop on my lap....doing what I tend to do every night.... read and watch until I fall asleep from exhaustion, with Daniel's video monitor right beside my bed.
Be at peace. Thank you for following us.... Please feel free to leave me any comments and questions here, on You Tube, on Facebook, where ever..
Life keeps us moving for sure. I've been thinking alot about my youngest son Thomas. He is currently 13 years old and in the 8th grade. Pushing himself through sickness he made it through 2 marching band performances yesterday. As he was playing his marching band music on our piano this morning... my mind focused on him. He's an incredible kid.
Thomas Hasselberger. in first grade he learned the piano and took a couple of years of lessons. He was in a couple of musicals (influenced by his sister of course) but when he got to fifth grade and put his hands on a saxophone, he became a different kid. First of all, we discovered he has perfect pitch. He switched to the baritone sax and started taking private lessons with Beth Doble at the middle school. She told me that he was really pretty amazing, and he quickly advanced past his grade level. In 6th grade he auditioned and made it into Western regionals, and was in jazz band in 5th and 6th. In 7th grade he moved up to the middle school jazz band, and also auditioned and got into Western regionals, missing the baritone sax spot in the jazz band by a couple of points. In the summer between 6 and 7 he decided to pick up a trombone. At the Danbury music center he quickly accomplished the trombone and played both trombone and bari sax. During 7th grade he played the trombone and the bari sax in band. In the summer between 7 and 8 he decided to pick up a bass clarinet. And we traded our trombone for a bass clarinet, which he is now playing. He also learned how to play the FLUTE!!! And surprised me by playing flute in the preparatory summer band of the Danbury music center. Thomas has a natural inclination for music. He knew this right away, but stuck it out in football. But now his main interest is music. He joined the marching band this year, as an 8th grader, and I assume he's doing quite well based on the feedback I'm getting. "Oh my gosh he got a 12 in the memorization test" etc etc.
I look at him, this tall big guy, who is smart, and charismatic and I wonder if there is MORE I should be doing to help him expand his joy of music. When Sarah was this age she discovered theatre, and voice lessons, and then RCA... it helped her grow and learn so much more beyond and with the Newtown program. Should I send Thomas to a different school? We now have the following instruments in our music room (previously known as the living room) Piano, keyboard, Baritone Sax, Tenor sax, bass clarinet, clarinet, flute, acoustic guitar, viola and violin (the last three being Sarah's, lol)
When you have a child, DANIEL, who will never speak, sing, play, dance, it truly brings value to every skill and talent that a person displays. When they find something that is within them.... its like a new person emerges. There was a time in my youth, when I was so engrossed in music (flute and piccolo), AllState first chair, marching band, and also in choir, but the flute was my thing. And I have not played in years. Its probably time. But my flute was stolen years ago, and my student flute is old. But this is not about me. I just am exploring how to further empower this boy who is 13 going on 16.
This is how I sometimes see myself. A big giant ball of rubber bands all wrapped up tightly squeezing and squeezing. Then someone pulls one way, and the other. And I am just yanked back and forth, as I fulfill everyone elses needs. I feel very loved by my children, but in a lonely relationship with no communication, so if you watched my videos, although I don't discuss it, it is heart breaking.
But Sarah has a way of just CRACKING ME UP when I need it the most. We really do have some fun sometimes. Even if its only Target.
It is August 14, 2014 and Daniel has been in patient at Yale New Haven Children's hospital since Tuesday morning, August 12. He has a head wrapped up in gauze to protect the bunch of electrodes glued firmly to his head. He is here because we wanted to record his neurological state when he experiences what I call one of his "hypertonic" episodes. And in true form, he has been completely relaxed and calm during the entire study.
I never thought as a Mom that I would sit and silently wish for my child to have a melt down and go wacky. But if he did, we would have been out of here. I get too curious here, about what is going on with the baby down the hall being rushed into the PICU. The hospital is a weird place. A blend of routine, mixed with emergency, mixed with exhausted parents and bored administrators. When I went downstairs to get a sandwich yesterday, I was standing next to some "important" looking doctor types discussing grants and blah blah blah and thought how ironic that it all seemed so "corporate" in their words. I was anxiously waiting for my sandwich because I had no breakfast, or dinner the night before. I should have packed food. It gets too expensive. With my infected sinus pain, and exhausted brain, I stood next to these two well dressed, good smelling, seemingly very intelligent looking men. Talking in a language I practically didn't understand.
Daniel is here because he has a brain deformity that I don't understand. That no one can explain it fully to me. When he goes into these freak out episodes, I am the one who bears the blast of the stress of it. And he has to experience it. But here, in this controlled environment, he just lays there watching TV and looking at the ceiling with a glazed sleepy look on his face.
I am so tired, and wishing I could just ask my child what is wrong. Instead, this sophisticated test of his brain, created by grants probably from some big important doctor people like those guys in the sandwich line, isn't doing what it should. Or, he isn't doing what they expect him to do. But kids like Daniel don't perform on cue. They are a mystery. It's part of the journey, the unraveling of mysteries. Or the continuation of the wonderment that is a deformed brain.
Oh I don't think I love tag sales anymore but it turned out to be ok. Ya do what you have to do, you know? It's a crazy ride this thing called life. I still have furniture that needs to go, and we never found the person who bought the bin of barbies.
The lucky penny. Whenever I see a penny on heads, I pick it up, say a prayer for financial protection and keep it. If the penny is on tails, I turn it over and say a prayer for the next person to have the luck.
Life as me, is complicated. It's a journey filled with twists and turns, details and management, and so much to do and work on. In the midst of what I call "Daniel business" I often get so overwhelmed and have to sleep. I do pretty well when I know that there is enough money to cover the household bills, groceries, clothes, insurance co pays, gas, that kind of stuff. But every once in awhile there is a time when there just isn't quite enough. It is in part due to the focus of my attention. When I have some money and can relax I then get my head wrapped around the details and perplexities of Daniel's situation. It truly is, without a doubt, quite complex.
When I run into crisis, like when I can't work due to work cutbacks, or lack of nurses, its a spiral effect. And then Daniel needs wipes, supplies, etc. Something happened to my cash flow. I have to go back through 1000 transactions and bills to figure it out. Life adds up so fast. Especially here in this part of the state. I am a full time caregiver first and foremost. I do not get paid. I get debited. Its rocky now, because my fragile child is 16. Raising money for his needs and the survival of our support structure was miraculous when he was little. Today, I don't know what to do because there are very little responses.
This is one of those mornings where sleep is sounding better and better, and its 8am. My husband and kids are sound asleep, snuggled in. Daniel and I are awake. Henry too.
Sunday morning should be a time of rest and family. All I can think about is how can I get money back into my account. Switching to a new health insurance coverage plan has required that I pay for every bit of mental health treatment up front due to a huge deductible.
Money is a stress that eats at your mind and heart. It causes anxiety. And when you have it, it provides relief. Being a one income family so that I can care for Daniel is a choice we made. Today, it would be incredibly to be able to concentrate on Daniel, but instead, I'm worried about not having enough money for my husband to do the things he wants to do. I really do need help. I don't feel invalidated, because I have this child who needs 100% of his mother. But the people who could help, ignore me, because I've needed help before. in the awkwardness of life, how do you let people understand that Daniel's condition is worsening not improving over time. The need is there.
Have a tag sale? So much work. Oh man. I will just pray that things will come together.
Daniel is laughing right now. Its a happy, belly laughing cheerfulness. Priceless this kid. I don't know how, but I am going to believe that somehow miracles will persist, even as time goes by and we all get older. Miracles are for everyone, not just when they are babies.
Time to have more coffee and fight off my insidious depression with a dose of Daniels laughing.
The dynamics of a family on vacation are really a study in interpersonal relationships. It is a process, you know what I mean right? The preparation time, so exciting! Getting on a plane and anticipating going far away for a nice long period of time. Then you arrive. This is where I have to stop for a second, and add in this paragraph.
Travel with a medically fragile child who just had a serious seizure two days before leaving, by the way. Early preparation is key. That includes making sure all prescriptions are filled, (like 12), all supplies are ordered in a quantity to suffice for vacation, shipping several large boxes of diapers, pads, wipes, formula, g tube feeding supplies, pulse ox monitor, nebulizer, swimming gear, and waterproof mattress covers. When that is done in proper timing as to meet you upon arrival, you then proceed to the packing for the child. That includes having rescue seizure medications in an accessible place and enough food to last a full day, just in case. Travel necessities also include a thermometer, portable pulse ox, and blood pressure monitor (which sometimes I need also). The bags are packed, the drive to the airport done. Luggage checked. 5 boarding passes in hand. And its security time!!! With a 16 year old in a wheel chair, the process is almost comical but necessary. The swabbing, scanning, poking and prodding all around the child and his chair is, of course, necessary. The family of 5 completes the complex security screening, usually about an extra 10 minutes, puts the boy's equipment back together on his chair and proceed to the gate.. WHEW. Almost there. We have to change Daniel's diaper before the 3 hours flight, so finding a companion bathroom is done. If Daniel has a BM in there, its a sweaty workout, on a floor, with pads and wipes. Then we put TWO diapers on him, so he doesn't leak, or GOD FORBID poop on the plane. Make sure we don't forget the drooling towel either. And its back to the gate we go, lots of people staring but I just smile through the sweat pouring down my face. I go to the girl at the counter and check to see if there is any chance that our family can sit together? Daniel, because of his condition, always sits in the front with me. The remaining family goes to the back somewhere. It makes my son Thomas sad, because we rarely travel and he wants us all together. So, once we are turned down for family togetherness, we wait for the call to board. We are always, I mean always, the very first people to get on the plane. (And YES we touch the plane for good luck, even Daniel) The wheelchair and the wheelchair tray must be gatechecked with a big lecture on how to be VERY careful with the chair because it doesnt fold up and costs more than a car. Then a JetBlue employee wheels Daniel to the door of the plane. Sarah and Thomas go in first to find their seats and get settled. Then I go in to be ready to receive Daniel. Dad carries him past the smiling flight attendants and plops him into his seat next to me. I must then make sure he is positioned appropriately. Thank you Dr. Smith for that spinal fusion, because Daniel sits MUCH better without scoliosis. There is much shuffling and settling. And then, we wait. Upon take off Daniel starts to scream and bite. The flight attendant leans over and asks if she can help. I get his medicine bag, and give him some attavan just in case. I also hear people around me buying headphones and I feel bad. The screaming is quite loud. I put my headphones on his ears, and plug into a TV show. He calms down. I order a coffee and breathe.
OK. Where was I? "then you arrive." Everyone is excited, and they unpack and start thinking about what we are going to do. We stay at a family member's condo in Naples, and its very accessible and convenient to properly care for Daniel. It's also in one of the most beautiful places in Florida.
By about day 4, things start to get a bit snippity, and personalities start clashing. As a Mom, I try to do the best I can to help each and everyone of my 4 family members with their concerns and complaints. The reality is, however, that Daniel comes first. His meds, his pump, his changing, watching for seizures, and keeping him engaged and entertained. There are times when I just start ignoring the ridiculous rants and negative lectures and let my mind escape to the details of the beautiful plants and flowers that exist only way down south.
During this recent 10 day trip to Naples Florida, thanks to our wonderful cousin who generously helps us experience vacation with Daniel, we went through every stage of everyone's personality. Mine too. I turned into a pouting brat when my family opted for the pool one day over the beach.
Even under the worst of circumstances, ie. having a medically fragile child to bring around in a wheelchair, their personalities still emerge and it is a refreshing blast of "yes, we really are a normal human family."
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.
It's late and I'm tired. My right hand, wrist, elbow all hurt from too much texting and typing I guess. I've found social media and internet groups to be such a place of connection and comfort. As you can see from the many video posts I have put up lately, I am on You Tube and trying to build a channel, mostly for Daniel's benefit, but really I am not sure where I want it to go. Sometimes you have to throw an idea to the wind and when it comes back at you its completely different. 
Be at peace. Thank you for following us.... Please feel free to leave me any comments and questions here, on You Tube, on Facebook, where ever..
Until next time.
