Bus or Mom...Which One??

October 7, 2017

Bradley has a backpack that he takes with him to school.  It isn't like one of those cute little character backpacks that the other kids are carrying to school.  Nope, he has a full size backpack, in orange because that is his favorite color, but it's the size a big kid or an adult carries.  It fits an adult nicely, I know this because I carry it into school and out of school for him.  What?  Mom does the work?  No, you need to make him be more independent...  yeah, yeah, yeah.  My son is 44 inches tall.  He has about a foot on his backpack.  In his backpack he carries: a lunchbox, extra can of Pediasure, extra bottle of diluted Vitamin Water, two changes of clothes, his communication book, extra syringes, extra tubes, and a box with his complete G-Tube button replacement.  Although the pack is not the same weight as he is...it has considerable weight to it, and height.  So yeah, I carry it in and out for him.

I take him to school and pick him up.  It's not that we are opposed to the bus, we are opposed to him not having someone with him all the time.  Again with that lack of Independence thing....  Sigh.  Bradley has a G-tube, if it pops out it has to be replaced within twenty minutes or he could be back into surgery for help with getting it replaced.  Bradley suffers from Reflux which means that there are times when he will suddenly start gagging and retching because the Reflux is forcing fluid up and he can't prepare for that.  He has a small pouch area near his wrap, it will hold fluid until such time that it doesn't and when it comes pouring into his esophagus there is no way for him to prepare for that and be able to swallow past that.  It is what it is.  Bradley has seizures.  Without me realizing it, my son has been labeled with Epilepsy.  Always before, he was referred to having Seizure Disorder, but after a sedated EEG last year, he came home with a new name for a new diagnosis.  So all of that together means he could be in trouble at any moment, there is no way he can be on a bus with an aide that is not properly trained to treat his button, vent him to help with the retching, or administer Diazapam to stop a seizure.  Without a medical Assistant on the bus, Bradley can't go on the bus.

Bradley has never shown any desire to go on the bus.

Bradley likes to surprise me.

Friday, Bradley met me at the door wearing his backpack.  He usually hands me his backpack. Instead, he turned like he was walking off to the car, but made a left turn and walked back towards the buses.  At first, he took a seat on the ledge, like he has done before.  He has always liked to wave at the buses as they leave, but has never made any inclination towards wanting to be on one.  Today, he waited until a staff member made to walk through the gate for the buses and then tried to go with them.  He'd move forward and I would pull him back.  He reached over and hugged me and then kissed me bye, then tried again with the teacher from the class next to his.  He took her hand and tried to get her to walk him to a bus.  Nothing doing buddy.

We had to wait for all the buses to leave, for Bradley to attempt to persuade every adult there to take him and then wait a little longer to make sure that the buses were really and truly gone.  And then heartbroken, he walked up the stairs and passed his classroom to go down the ramp.  Once there, he finally let the backpack fall to the ground, tired of carrying it.  His teacher saw us and joined me, while I explained our predicament.  She ended up walking to the office with us because she was helping to coax Bradley past the busy playground where the Kindergarten classes were enjoying their weekly Obstacle Courses, something he loves and so badly wanted to be a part of but couldn't.  I promised him an Icee, but he wasn't interested.  He did turn when I offered him an ice cream, but he decided to sit instead, watching the other kids.  I dug in his pack and pulled out his McQueen car and offered it to him if he would stand up.  He did stand and I gave him the little car, but then he just finally looked up at me, utterly defeated and put his arms up to be picked up, so I did.

I carried him to the office, once there I put him down and we walked the rest of the way holding hands.  He climbed into his car seat with my guidance (sometimes he over compensates and almost falls out of it), then let me buckle him in while he played with the red, shiny vest he loves to wear.  Does he need a vest yet...nope, but he walks out of his room with it, trying to put his arms through or wearing it backwards completely, so yeah he gets help putting it on and wears it on these last almost chilly mornings.

We returned home, Wendy's Frosty in hand, only to see that my little trooper had fallen asleep in the car.  The Frosty waited in the freezer until later and he took a much needed nap until his sister's volleyball game.  We're at the doctor at UCLA on Monday, so I have to admit I am both curious and dreading his dealings regarding the bus on Tuesday.  We live five to eight minutes away, it doesn't seem worth the effort; and yet, maybe it's the most important effort out there as he exhibits his independence and his desire to follow his friends.  Things to think about and talk about in the coming weeks as we try to determine what would be best for Bradley all around.

Ending Day 7 of the 31 for 21 Blog Challenge.  Buses or Mom's taxi.... what to do, what to do!

Everybody Has Battles

October 6, 2017

Sydney's Volleyball team lost today, putting them at 1-1.  The loss sucked, as all losses do, but there was more to this loss that really has me.  I've been trying to stay back and hold my tongue this whole time, but man it is hard and it just got harder.

In a school that doens't allow for parents to be coaches...there are a lot of parents being coaches.  The Administration gets around this rule by making sure that there is someone employed by the school to be part of the coaching staff.  Our Assistant Coach is great, she is loved by everybody at school  and she's tough and kind, the kind of role model we want around our kids, especially our girls.  The coach is parenting a girl that has some skill on the court and may be a great setter someday, she just can't seem to find the focus or desire to be competitive right now.  I say that knowing she's a bit of a flighty girl, but also realizing that she has kind of given up on the team already because of her mother.  Mom, has no volleyball experience.  She won't listen to her daughter or any of the other girls who do have experience when they suggest things like: passing drills, setting drills, hitting drills, or serving drills.  Her response is simple: scrimmage and let's see what you can do.  Considering some of these girls have never played...it's difficult to see the new girls improving, and the ones with experience are shutting down and trying to stay engaged in a team that is not engaging them.

It doesn't help that practice is virtually over too.  The girls were practicing on Tuesday and Thursday. But now the games are all on Tuesdays and Thursdays, so our girls are getting some practice time a bit before the other teams play and then they are done.  When asked about changing practice dates so our girls could still get practice time, the answer was "No" because the Coach doesn't want to practice on the other days.

Yesterday, the girls had their first game.  Coach put her starting team on the floor, warned the girls (team of 17) that there wouldn't be much subbing until she got the hang of it.  Our girls won the first two games.  As a general rule, if the set is completed in two, then a courtesy third game is played, that way the younger and/or less experienced players are given a chance to get some real game time play and experience.  So that's what happened.  In fact, the Coach asked the girls if anyone would sit down so that other girls could play and mine offered, but the rest of the team panicked, so she stayed in.  She came out at the end of the second game though, once there was a nice lead and she didn't play in that third game at all.

We show up for today's game and the Coach sends the least experienced players out on the court and leaves the starters sitting on the bench against a team that we all know is pretty good.  They lost the first game.  In the second game, she put all the starters in...that one they won.  She mixed it up a bit in the third and the girls fell to a heart breaking 12-15.

Watching the first game I looked at Eric and said, "Well, I'm guessing the Coach got a bunch of emails from a bunch of whining parents because their super stars didn't play."  So they played and they lost.  I talked to one of the parents who said that when the Coach came out she said she had gotten a lot of emails telling her that she was too competitive and upset their girls didn't get to play enough.  I guess they didn't get to start.  So... off they went to the starting line and we had to watch them struggle and lose.

So now, we aren't sure what the Heck.  We already know that Sydney has very little chance of making the Freshman team at Cam High because of the Coach there and the fact that we don't pay for our girls to play at the Club he owns.  Still; the lack of competition now, will hurt every one of the 8th grade girls that are hoping to make the Freshman team next year.  The girls with experience were left to sit on the bench, wondering what they did wrong.  They won the day before nad now they are benched.  Worse, was the player that started to cry when she was subbed out of the first game because they were losing so badly.  The girls kept the slide down from there because the coach was too busy trying to deal with a crying player.  Meanwhile, my kid is sitting on the bench looking at the spectacle and thinking, "Crying, seriously?  Grow up!"

I love this kid.  I love her fighting spirit.  I love that she wants to play every minute, but she's willing to sit down and let someone else play once the game is headed to a win.  I love that she was the one to volunteer.  I love that she is willing to lead that team; that when the coach is late, she gets the girls practicing drills and actually learning how to pass and set and move.  It's awesome!

It's not the loss that bothers me.  We're talking about Midle School Volleyball.  We're talking about girls that are finally getting their first chance to play competitive Volleyball.  And I am more than okay with a loss.  But when the game is lost like this; in this way, and because of the Coach setting them up to fail...I get bothered.  Right now I am wanting my daughter safe, and I am wanting her to stay injury free so that she can play Club ball and have the chance to compete and grow in her skills.  It makes Middle School ball look dangerous now, and spirit crushing.  But my Sydney is a fighter, and she will bite her tongue and keep at it as best she can out there, while her Dad and I will be sitting in the stands cheering for her, and watching.

We'll be there, because she's out there.  But somehow the fun has been taken out of it and now we just want to get through the Season and move on.  How incredibly sad for all of us.  Something with such promise and fun, is now neither.

Bradley may have his struggles, and we may have to fight for him because he has an extra Chromosome, but his is not the only battle we fight.  Right now, we're fighting for Sydney.  And this is the toughest kind of battle, sitting in the trenches and not saying a word while we wait it out and see where it goes from here.

Happy Friday All!

Missing Sleep

October 5, 2017

So, turns out Bradley is not a sleeper.  Or maybe I should say that he is not a sleeper when I am a sleeper.  Or maybe, he just can't continuously sleep through the night.  Point is, there are very few nights where he sleeps.  We'll start out great, and he'll sleep for a good five hours, but then he is up walking through his bedroom and into ours.  And I would be totally willing to let him sleep in between Eric and I, if only he would sleep.  Problem is, he wants to practice every yoga/pretzel type move that has ever been created, mostly with his eyes still closed.  So I pick him up and put him back to bed.  The first time, he settles back into his bed and goes back to sleep pretty quickly.  Then he'll be back and at it again, but this time his eyes are partly open and it will take longer to settle him in his bed again.  And if it happens again, and again...the time gets longer and longer for him to settle down to sleep.

We have tried so many things to help him at night, and some will help for a little while and then it won't.  I can lay beside him one night and he's out, but then the next night he is not interested in that, and instead I sit at the end of his bed and ignore the behavior and he'll settle down, one night it turns out he just needs to be held, one night it's a blanket, one night it's not, one night it's the weighted blanket and the next it's not, one night I sit by his bed, one night on it, one night falling asleep curled up at the bottom of his bed because I can't keep my head up and threaten to break my glasses.

I don't know that this is about the behavior with him.  I don't think that he is trying to be a pain or that he is choosing to be up all night on purpose.  If it were just behavior we could work with that.  I could make a call to start a process to have a Therapist hired to come in and work with Bradley; likely every day, for an hour or two at a time.  If we had too, we would.  But only if we had too.  It's incredibly difficult to allow someone into your home every day, every week...for an hour or two...etc. Oh my gosh!  I try to keep my house clean, but there are days it defeats me.  We have two cats and a dog; the hair alone is a daily assault, and if you miss a day...good grief, you might as well attach a battery to it, give it a charge and let it free in the yard!  Yikes.  And then there is the bathrooms and the vacuuming and the general cleaning.  And then forget teaching the girls about chores and responsibility, that's out the window completely.  By the time they are home from school the therapist is either here, or is gone...so the dishes already had to be done and the backyard had to be cleared of dog poop just in case; God forbid, they want to take him outside for play or therapy or whatever.

That's the price you pay for having therapists coming in to work with your kiddo.  And it's not like Mom gets a break to go read a book or something, nope.  Mom has to be somewhere near in order to be sure she is learning this new way to handle behaviors, etc.  So then you have a therapist that is grading how you are doing as you learn something new, or continue to try to implement a new technique.  Good times had by all.  We've been lucky on a few fronts.  One, we've mostly had really sweet and genuine therapist come to work with Bradley.  And also, if you can call it good - this is not a behavior instance.  All the well meaning therapy in the world isn't the answer to this.

For Bradley, we are fairly certain this is all connected to activity in his esophagus and/or his brain.  When there is lots of reflux, everything burns and that keeps him awake.  When he is refluxing even more he can wake up gagging and retching, and that not only burns but it scares the Hell out of him.  But who can blame him?  It scares me too.  And then there is the activity in his brain.  Bradley is still categorized as having Epilepsy.  When he sleeps his brains has a lot of seizure spiking activity.  His anti-seizure medication keeps him from having a full seizure, but it doesn't prevent him from having these spikes.  All that activity can cause headache and irritability.  I keep him flush in Vitamin Water because I can infuse his cranky mood with lots of B6 and rumor is that will help.  For the most part, I think it does help him.  Is it the B vitamins or is it the yummy flavor?  Not sure, but he keeps drinking it so I'll take it!  Some nights everything is so bothersome for him I will give him Tylenol or Motrin, because I know that sometimes the headaches can be really bad.

Some nights I sit in his room and wonder if I will be sitting in his room by his bed settling him back down to sleep in another ten years, or twenty, or for the rest of my life?  I'm not going to lie, those are my roughest days, when I look into a future of this potential never ending Groundhog Day scenario, and I get frustrated and feel defeated.  Oddly, these feelings go away by morning or one good night's sleep later and I feel so much better.  Goes to show you how important sleep truly is.  Or perhaps how much sleep is my kryptonite.  Either way, on most days, after the kids are off to school and the house is quiet save for me, the animals, and the crazy old neighbor lady that haunts the neighborhood peeking in windows and constantly knocking on my door...I try to get a nap in and catch up and the sleep that is lost.  Some days it's just daunting.  

Tonight, he made it a whole two hours and is was back out here snuggled on Dad's lap going back to sleep.   Given our first Volleyball game of the Season was tonight (a win for the middle School sister's team), I guess it makes sense that he has a hard time easing out of that again.  Poor guy!  Anyway, off to try to get him settled into his bed for the second; though probably not the last time  tonight.  

Pleasant dreams all, now you understand the Challenge part of the 31 for 21 Blog Challenge.  If it were easy it wouldn't be parenting!

Why We Run So Hard

October 4, 2017

My girls play volleyball almost year round.  And I love, absolutely love watching them play.  I must, I mean we sit through practices on sometimes not so comfy benches or floors and tournaments with least comfy benches because there might not be room for my more comfy chair.  A chair that Eric had my name and a Volleyball silk screened on.  I even only kind of mind the god awful early mornings where we have to head out to those tournaments, maybe more than kind of, but I do it.  Yep, volleyball mom proud.  And I have lots of video too!  Eric and I swap videos when we aren't both there, we try to keep this a whole family event.

We were really worried that Bradley wouldn't be able toterate the tournaments, the noise, the over stimulation, the constant balls that he couldn't have. We learned quickly to stop under estimating him.  Does he want the ball? Yeah, he really does.  But Bradley is just as happy to watch his IPad and occasionally look up to watch some play, hug his girls, ask for snacks, then head back to watching  his movie and sometimes playing with his magna tiles.  Sometimes, because there are times he'll see the great fun of tossing those tiles, that's not great.

Madison is almost sixteen, Sydney just turned thirteen.  We run all over the place for these girls because we are painfully aware of the clock ticking.  Our time as the most important people in their lives is fast ticking away.  There are times where Bradley needs everything; every moment, and the girls are quite familiar with this need and really do handle it with more grace than most would expect from girls this age.  So for us, giving the girls as much complete support as possible is a priority.  We went to all the tournaments, we cheered for our girls and by extension, their teams became our girls and we cheered for them too.  We had too, it broke my heart to see how many girls were sent to these tournaments with a team mate and no family to cheer them on.  And we aren't talking hardship or issues with other kids, this group set up a schedule so three moms got three tournaments off and had a day to themselves.  I get the desire, the need, I get it and think it's great that they could count on each other and have breaks.  But being at those games, I saw the look in the eyes, the sad smiles when a girl did something great but no one from home was there to see it.  So we cheered for them, we high fives them and by the end of the season, we were hugging them because we knew them and they knew us.  Great memories!!

We're not sure what sport Bradley may choose to play.  We tried T-Ball, but it was at the Community Center which was great, except he just wanted the playground.  I ran more than he did.  At school, it seems like he might be taking an interest in basketball.  So we'll keep trying to engage him in playing basketball.  But right now at school, his Occupational Therapist is trying to teach him to throw and catch a ball.  Great!!  Awesome!!  One problem...okay maybe two.  Every time he's holding a ball, he holds it up and uses his right hand to try to hit it.  I'm pretty sure he's trying to serve it like a Volleyball.  And second, when they try to get him to catch the ball, my little guy puts his arms together like he's trying to pass a Volleyball.  ;-).  Anybody else seeing a potential sport for my son someday?  Who knows, maybe football....but I definitely think that our house will have one more Volleyball player in our house and I couldn't be more thrilled!!!

And just like with our girls, we are going to support whole-heartedly suppport whatever sport or non-sport Bradley chooses to love and try to find every opportunity for him to learn it and play it and love it.  Because that's what we do.  Maybe we are lucky in that we may always be the most important in Bradley's life, but given the way he is bonding with his classmates, I am starting to believe the talk that my guy is going to have just as many important relationships that my girls will.  Those three will always be the most important in the lives of Eric and I, and we wouldn't have it any other way.

Pick your sport or don't, we're with you every step of the way Bradley!  Play your hearts out girls, we love every minute!  When life is good, you just love the ride!

31 for 21 rounding out Day 4!

Accepted

October 3, 2017

I think one of the many things that Eric and I have worried about with Bradley is whether or not he will have friends.  He has so many medical issues that we stopped putting so much pressure on the theory of whether he would blend into a regular classroom and be able to be a part of general ed.  Honestly, it's not that we don't care, we just don't have the energy to plan that far ahead.  Right now he has to be vented at school, he has to always have his seizure medication with him at all times, and he currently is still in diapers because his little GI trac is quite unpredictable and really isn't sending his body signals to warn him of impending doom.  I do believe that someday he will be potty trained; and I know some of you think I am delusional at times; but to be fair, my belief in Santa Claus is more a belief in the magic of Santa and I think completely justified.  But my point here is that until I can get him to that magical moment of knowing and going...I don't see any chance of general education for him as more than a partial day kind of thing.  And while some will disapprove of my choice, I am currently okay with where he is at in school and those around him.

We want him to grow socially and start to interact more effectively and appropriately with the world around him.  We want him to be able to initiate not just his needs but his wants.  As we continue to use signs to help bridge the gaps in his non-verbal to attempt at verbal world, I keep learning new signs and so does Madison.  I have a fifteen year old linguist who developed a strong first year French brain and dropped year two so that she could take American Sign Language in order to be able to pick up more sign and talk to her brother.  This class is offered by the local community college at her High School, and she is so animated and excited to be learning all that she is learning.  I ask her all the time, "What did you learn today?  Will you teach me some of your new signs?"  And she does.  And she's so excited because she goes to her brother and teaches him new signs or sometimes she sees his approximation of a sign that she recognizes from class and she knows what he's saying.  It's pretty cool to watch.

When he is at school, Bradley is in his everyday class, but has started to blend in to another Special Day class twice a week.  Suddenly, everyone knows Bradley, and somehow these incredible kids know me.  They see me with him once, and they never forget who I am to Bradley.  I can't begin to tell you how wonderful it is to hear one of these sweet kids call his name and say "Hi Bradley!"  One little girl goes out of her way to approach him and tell him Hi, and ask him about one of his favorite activities in their classroom.  Today, she saw me as I was walking in to pick up Bradley and she hurried to me and told me: "Bradley is the sweetest little boy!"  I smiled at her and told her: "And you are the sweetest girl."  Her smile was huge as she started to walk away, I said: "I am so glad he has class with you."  She grinned over her shoulder: "Me too!"

And if that didn't make my day, picking him up from school sure did.  Turns out Bradley has buddies in class that he is growing very close too.  He and two other boys like to play cars together, but then he really likes to sit next to the new girl.  Score for him, she sits next to him during Goal work in the mornings.  Last year, we noticed how his little friend was really bringing out his social side.  When I picked him up from school one day, his little friend put his arms out for a hug and Bradley complied, he bent down and hugged his friend.  What ensued was a massive hug fest as he and two of his classmates hugged each other back and forth for about five minutes.  I walked away with a little allergy issue realizing that my son had friends.  The same little boy is in his class this year, and their relationship is continuing to grow and get stronger, and I couldn't be happier.  They play together and they vie for the attention of one particular aide in class that they both adore.  I have witnessed my son swoop into her work area before his friend can get there so that he can work with her and not someone else.  I love to watch his brain working through and problem solving to get what he wants.   Cute little manipulator that guy!  ;-). And like in every epic friendship comes the part where they like to get into mischief together.  Today for example, when the two of them were on the playground and
decided to attempt to climb out of the fence area.  His teacher said they stood together at the edge of the fence and both were taking turns trying to put a foot through the opening between the fences to see if they could climb through and make a run for it. I know that I'm supposed to be irritated with this kind of escape attempt and mimicking of behavior that is probably not the best practices...but dang!  My little boy and his adorable partner in crime were planning and attempting to execute a great escape, how cool is that?

Today it's breaking out of the playground, tomorrow???  Oh my gosh the sky is the limit!  Make mischief little boys, grow together, learn together and may you have the chance to continue this budding little friendship for the rest of your lives.

My son has a friend.  I wanted to believe that it would happen, I just wasn't sure when or how.  But am so thankful that it happened so much sooner than I feared it would.  Acceptance by a friend, is all we ever truly want isn't it?  So thrilled that my little guy is finding that right now.

Day Three of the 31 for 21 Blogging...and my how beautiful Acceptance truly is!

"Look For the Helpers"

October 2, 2017

How is it we go to sleep at night with everything; if not all right in THE world, at least all right enough in your world.  But then you wake up to news that leaves you horrified and worried and maybe a bit broken?

In mid-September, my dad's family managed to gather us all in Las Vegas for a small reunion in order for us to see a couple of my cousins and my Aunt (who filled the role of adoring, doting, and spoiling grandma my whole life).  I was afraid that that magic from that weekend would fade too quickly.  And I was right because this old man; in a place I felt so much love and joy, destroyed the lives of so many in a matter of minutes, and all while I slept.

While fear and uncertainty now rule the day, heartbreak and tears are not far behind.  Innocence was shattered and the simplest joy was stolen.  This morning I spent learning the news and then scrolling my Facebook feed in fear; waiting and looking, praying that the people who I knew were in Vegas and at that music festival were okay.  Friends that are like family, friends that have become family, our Navy Family...scrolling for check-ins about their safety.  The check-ins came and the relief and the guilt that I was so Blessed when others were not; was instant, and hard.

I watched the news today.  I watched the footage that people recorded and shared with the world.  I noticed some too drunk to run yes... but I also took note of the greatest parts of the human spirit.  The ones that stood to draw fire from others, the ones that shielded others with their only available shields: themselves.  When confronted with the unthinkable horror of a battlefield in the middle of our home: people protected, they saved, and they fought the only enemy they could see, death.  People went back in, people carried strangers... people responded from everywhere to try to save everyone they could.  But they couldn't save everyone.  And we have to come to terms with that.

As the names came in and will continue to come in, I'm reading them and learning of those we lost.  I want to honor them by knowing them, they deserve that and so much more from all of us.

The lessons I take away is this:

Evil exists; and in case we ever start to hope it doesn't, we will be reminded.

We have a precious and finite amount of time here, we have to use it wisely.

No matter what we think of ourselves, someone truly believes we are amazing and worth it.  Someone would cover you because they love you that much; or maybe just because life is life and that matters.  I felt the lump in my throat, knowing that I have someone like this in my life, and it's humbling to be so loved.

I believe that my God is good.  That even on a horrific battlefield, the Lord was there; his angels leading the way out, giving the courage and strength to help so many survive and help.

I believe that God giving us Free Will is a good thing; until last night, last night I wish HE would have stopped that man's heart before he broke the first window, or sent a wind so strong that he fell from the window he broke and straight to Hell where he belongs and is in now.  I never claimed to not have a bloodthirsty side that wishes for vengeance!

And lastly this...

Because evil exists, we have to hold tighter to those we love and hold dear.  I held my children longer this morning before sending them on their way; admitting to myself that I wanted to keep them home but didn't because fear doesn't get to win.  We train and prepare in the hopes that given an attack we might have a fighting chance, but know that Cowards hide to commit their evil.  I took extra time to hug my kids longer, kiss their cheeks and look them in the eyes to tell them how very much I love them.  My kids are my magic: they bring frustration, passion, love, laughter, and joy.  I have to work to keep them safe and they have to work on growing up in a world that is so much more dangerous than I ever dreamed. And I tell them, when the world around you falls into despair, "look for the helpers."  And a part of me knows; someday, I believe they just might turn out to be the helpers.

Praying for the lives lost, the ones fighting to stay, the survivors, the first responders, the ones who stayed to help, and the families!  Praying for us all!  God Bless you and yours!  Love your families and your friends!

Let's just hope for Acceptance of each other today and some peace.  Today we all mattered!  Pausing my 31 for 21 a little bit, back at it tomorrow.

31 Blogs in 31 Days for Down Syndrome Awareness and Acceptance

October 1, 2017

As Facebook likes to show me, there are memories that I remember like it was a moment ago and then there are those that I look at and try to place them in my mind.  I get that your mind likes to only give you what you can handle and will protect you from the rest…but then there are the memories that you cannot possibly forget as they are etched in your memory like someone layered them in with a laser. 

Yesterday we looked at a memory of Bradley that took us back to his very first surgery, still in the PICU and fighting to keep an IV line working.  We were coming to the end of the long ten days that we spent in the PICU and we were trying to mentally prepare to make the transition to the regular Pediatric floor to learn how to feed Bradley through his G-Tube.  At the time, my hand still shook like crazy every time I tried to insert the catheter end into the port site, I can’t even remember now how many times I fumbled on my way to learning how to do the things for Bradley that keep him here. 

The last couple of days there have been other posts about that time, and I felt myself drawn into those memories, the good and the bad.  The moment when the hospital staff stopped looking at us as mere parents of a patient and starting calling us by name.  When the head of the PICU turned and look at me when I voiced my concerns and he not only listened but agreed, implementing a plan that would work out best for Bradley.  The Nurse that shared Eric’s name and walked around his shift with Morphine dialed in and ready to go at a moment’s notice because Bradley would go from sound asleep to wide awake and fighting within ten seconds and we had to keep that last IV line in place for as long as possible. 

At the time, we didn’t have a blog to talk about Bradley, and it was so cumbersome to try to let everyone know what was happening with Bradley so we would publish notes on Facebook.  Sometimes I would read Eric’s notes that he posted, and sometimes I would see them years later, even though I was tagged in them.  I read some this week that I am not sure I ever read the first time.  And they made me laugh, and cry… and I was brought back in a flood of memories to moments where we actually questioned whether our son would be coming home with us from the hospital.  I remembered Eric and I taking turns standing by Bradley’s bed throughout the night.  I stood there and kept one hand holding his, and one hand on his leg, just resting there because he kicked out in his comalike sleep.  Not a big deal, except he had a tube stretched straight up from his belly to an opened syringe that constantly vented his belly.  To this day, I can still see the episodes of M*A*S*H that played during my watch, keeping my company and awake while Eric caught some sleep.  The Nurses thought we were crazy until they saw Bradley star to kick, then they brought us a chair high enough to sit by his bed.  Then they brought me a rocker and a cup of tea the night he kicked so hard he sent his button flying and both his parents into a panic.  I sat in a rocker and rocked my son for the first time in nine days, able to hold him like that without tubes and wires and such while we awaited the surgeons to come and see if he was headed into surgery or if the button could be placed at bedside…we got lucky, it was bedside.  I gave Bradley to Eric and let him rock our son for a few minutes they hooked him back up and decided that the gravity feed they had set up was too dangerous and instead chose a side venting that left him no chance to fling his button through the air again with a quick little kick.  Good Grief.  Some things you can’t forget even when you try. 

And so, by the Grace of God, here we are, more experienced but not really braver.  Emergencies are things I just have to breathe through.    On the same day; but a year ago, I had Eric in the hospital with chest pain, seven years after Bradley was trying to get strong enough to come home.  And I was busy sharing Eric’s medical history, his medicines, asking questions and waiting for answers.  Definitely more vocal now.  At the same time, I was texting my girls, were they all right, was their brother still sleeping.  When I sent them to bed, I told Madison to keep her phone on her pillow.  I had the app turned on to see Bradley, monitoring him the whole time.  I watched him sleep and turned up the phone to hear him breathe when I couldn’t see it.  At 1:30 am, I called Madison and told her to meet her brother on his way into the hall and I was on the way to get him and put him back to bed, Dad was in a room to stay overnight.  I got home, rocked Bradley back to sleep then showered and slept for a few hours before I got everybody up and off to school and back to the hospital to be with Eric.  Never once did I panic, in my head I understood that he was doing well, that we were out of the woods this time.  And I had it all together until I walked into his room and saw him eating his bland breakfast and smiling at me, telling me he could go home soon and I just smiled at him, and felt myself actually take a real breath for the first time in hours.  My head knew, but my heart didn’t believe until I saw him again and knew he was all right.  Later I would wonder about not being more upset through it all.  I was almost too calm, to some maybe uncaring?  But then I realized that when you educate yourself you know some things, which helps.  But when you live through the flip out of the frying pan into the fire you get a whole new view of the world happening before you.  The worst news comes with the most questions and clarifications and then you process as quickly as you can until you have some grasp on the situation…then you can let the panic in, but sometimes it just takes so much more energy than you have to spare, so calm waiting settles in and sits with constant prayers as you wait.   And that’s how I get through.  I see this in my girls too.  I took Eric by each girl’s school, just to call them to the office to hug their dad and know he’s ok.  These mighty little warriors that pulled themselves up, took care of their brother and each other throughout all of it; crumbled into tears as they buried their heads in his chest.  Then I felt my own tears of relief, of gratitude that Eric was okay, that we made it through a rough night, that these little girls were mine to love, that these little girls have learned to hold the line until it’s okay to let it go.  I think that Eric and I are teaching them that and that makes me think we might be doing something right. 

Welcome to October folks.  It’s time to invite you in to see this life we lead and the sweet children that make it all work, the parents that love them all and the extra chromosome that has found a way to bring us one incredible little soul to love who teaches us something wonderful and new every day. 

 

31 for 21!  Down syndrome Awareness!  October absolutely ROCKS!