How I Failed at Parenting This Summer

This summer was tough on me. I mean TOUGH. Michael started working crazy hours back in May and it continued through August. Which means I took the kids with me to work WAY more than I thought I would have to.

Kyle is easy at work. Give him a phone and sometimes his favorite cousin and he could be entertained for hours.

David is not easy. At all. The first few times we were there on a regular basis, he was fine. He was happy to explore a new territory. I let him scoot around the office freely. Until he busted his head back open. Along with the huge gash knee. And the cuts and scrapes on his elbows and arms. As well as the terrible bruising along his spine. I knew he could no longer be free.

So we tried the wheelchair. He hated not being able to move. He cried a lot. He thrashed around a ton. So I brought his blue tumbleforms chair. It worked for a little while. But he eventually figured out how to dive face-first out of it onto the office floor in front of him.

He peed through every pair of shorts that I brought with me. Every time we were there. He refused to wear a shirt. Sometimes going shirtless would ease his frustration and anger, so we just went with that as a dress code for him while we were there.

Needless to say, it was hard for me to concentrate with him there. I have never been so grateful for school to start. I miss him. But I just can't be functional while David is at work with me.

I know we shouldn't grade ourselves compared to other parents. But I often do.

I had so many things I wanted to do with the kids this summer. But by the end of the day, I was exhausted. Michael was tired as well. But when he got home from work, several days a week I escaped to a friend's house for some me time. We self-tanned, shaved faces (ask me about the tinkle razors-seriously life changing), ate food that wasn't good for us, drank adult drinks, and just talked. I never knew how much I needed time for myself. But I did. And while I still feel badly for ditching my children as soon as dinner was over, I NEEDED to. And they survived.

Speaking of dinner........Let's chat about what my family ate for meals this summer. Occasionally for breakfast, we'd make scrambled eggs. But most of the time Kyle just ate cold pizza. Or 4 (yes-4) almonds. And I didn't care. For lunch----he ate junk. Seriously. Slim Jims and popsicles galore. And it was ok. For dinner. Goodness. I don't think I shopped with a complete dinner list and grocery list made all summer. Michael grilled out a lot. We foraged around in the refrigerator and freezer a lot for scraps of food that could possibly turn into a meal. Magically. Because I usually didn't have items to make a complete meal out of anything. David ate the most nutritiously here, getting his 6 cans of Ensure daily as well as all of his necessary medications. That is one thing that I did not falter with. But poor Michael and Kyle. We ate like crap. And we survived.

Those things that I wanted to do with the kids. They didn't happen. I was either too tired, or David was too fussy. Or I just didn't feel like loading David into and out of the van multiple times and pack a diaper bag and guess how many changes of clothes, or how many diapers we might need. Mentally, I just didn't want to do it. Kyle played way too many video games and watched numerous Minecraft and Try Not to Laugh videos on YouTube. And he survived.

I often felt like I was drowning this summer. I could barely keep up on laundry, bills, cleaning, or life. I felt like I failed immensely. I know I drank too much. More than I usually do in the summer. Give me all the fruity drinks in the world. Michael has taken up whiskey. LOL

But despite us being a hot mess ALL SUMMER LONG......those kids were never loved any less by myself or Michael. We made it. We still managed to take a vacation, Kyle managed to get to the pool, run his first 10K, jump on the trampoline, read some giant books, and play with old and new friends. I was looking  back on my phone at all the pictures I've taken. And my kids (mostly) had smiles on their faces and there were memories to be had by all.

So did I really fail at parenting? I think I might have quite possibly made it through with a passing grade (probably not more than a C though). We had our rough moments. But we had great ones as well.

Strength vs Will

"You are one of the strongest people I know."

I hear it a lot. I know others who hear it a lot.

I am not strong.

I am so weak.

At this time in my life, I can't even count how many times I have assumed the fetal position and cried for hours on end. Hundreds at least.

I can't tell you many times I have pasted a smile to my face and pretended that everything is ok. When ok is about the farthest thing away for me. Or us.

I can't tell you how many times I just want to sit on the couch and stare into space. And do nothing. Not even take care of my kids.

I live for days on end waiting for my oldest child to come out of a state of unawareness and show signs that he is among us again and aware of our love for him.

I often lose my patience when he cries non-stop for days. And I cannot fix it.

I can't tell you how often I have needed to step away from everything. Family, friends, work, life. Everything.


My strength is really weak. Emotionally I have had a really hard time for the last 7 months holding it all together. He was so so sick. You think you're prepared for something like that and the possibility that comes along with that. You will never be prepared. Not ever.


Physically-people see me as strong. I lift and carry this 70 pound child to and from the van multiple times a day. I've dropped him before. Twice actually. Trying to put him in the van. I cried both times. My back physically aches daily. I question how we will continue to do this.

While my strength is weak, my will is incredibly strong. I have a fire-driven will to move on.


I do cry. I cry so much. If you've seen me cry-----we must be close friends. Because I do try to hide that part of me.

I should not be ashamed that I cry when things are hard. Because I often find my tears are the fire to strengthen my will. My will that I will continue.

I do paste a smile on my face. I let people in on this blog. But rarely do you see that side of me in real life. Sometimes I'm embarrassed about the lack of control over my emotions. That fake smile gets me through a day of embarrassment. Because if I'm smiling, no one will ask me what's wrong.

I will try harder to stay real. Sometimes "fake it til you make it" is a necessary reality. But I am going to find the will to be honest with those who care about me.

My willingness to wait out so many days of David being locked away within himself or stop crying for days on end is so worth it. Because we get true happiness and a joyful soul from him. Sometimes he is almost on heightened awareness after being locked away for days. And we get amazing happiness from him.

ha

My strongest will comes from his strength. David is absolutely the strongest individual that I know.
He is physically strong. Freakishly strong. His strength and will have gotten him through multiple severe illnesses in his young life. He has figured out how to be mobile to the best of his capabilities despite the odds stacked against him in terms of muscle spasms and lack of body control.

He is the best possible David he can be when he feels the power to do so.

My life would be empty without his strength.

I am weak and he is strong. But he gives me my will. My purpose.

 

Seniors

Social media has been so much fun to watch this summer. Lots of family vacation pictures, ball pictures, pool pictures. So many special memories for families and individuals to treasure.

Some of my favorites? Seeing many friends post their kids' senior pictures. It's awesome to see what wonderful people some of these young men and women are growing into. So close to adulthood, yet still relying on mom and dad for a bit longer.

Did you know that technically David should be a senior this year? He should be a part of the class of 2018.

He's not. And that's quite alright. I've come to terms with that a long, long time ago. He will be listed this year at his school as a junior. We "retained" him a year in jr high. It was what was best for him. He will go to high school until he's 21. And we don't really know what his future will hold after that, and can only pray that there will be some kind of day program for adults that he can participate in.

We aren't looking at colleges. We aren't worried about SAT's or ACT's. We aren't out shooting his senior pictures.

What I am doing to prepare for his 18th birthday: Worrying

I don't sleep at night. So I research how to gain legal guardianship of an adult with disabilities. I research how to gain SSDI for him. I research local specialists in the area for his many symptoms of You-Hoover-Fong Syndrome. Because pediatrics is coming to an end for us. It's so scary and intimidating, and causes me more stress than I'd like to admit. Some might not understand this process. I don't understand this process. I want to understand it. I'm trying to understand it. But it's a lot to take in.

What I do know: I will never stop researching until I DO understand it.

I am tired. So tired. But trying to be informed is the way to do this. Next on my list is researching attorneys that handle this kind of thing. It makes me sick knowing that I have to pay someone to help me be able to make decisions in my mentally handicapped adult child. It's not automatic. I have to go through the proper channels to ensure that I will continue to be the one to make choices for him. I know him best in this entire world. The court has to agree with that decision. I'm sure it won't be a problem. But still. They have to appoint me as his guardian.

And while we might not be taking "senior" pictures of him. I will continue to take regular, everyday pictures of him. And continue to share the heck out of them with my friends, family, and social media audiences. I keep it pretty real. And the world probably needs a little more reality at times.

Congratulations to my friends' amazing children entering their last year as a child. God has blessed you all with so much goodness and it makes my heart smile to watch them grow and develop.

January 16th

I think I'm ready to share.

This was taken 2 days before his hospitalization. He was totally fine in the days before he got so sick.

I know I shared on Facebook our scary week in January when David was super sick. But I haven't written about it yet. It was scary, a lot to process, and honestly I didn't want to jinx things. But the memories are engraved on my heart & soul, so maybe writing them down will ease the constant anxiety I have regarding everything David.

Monday morning. I went to wake David & start meds like I usually do. As soon as I opened the door, I knew there was something wrong. He was stuck, on his stomach, in the corner of the bed. His arm was bent under him at an odd angle. His breathing was heavy and he was drenched in sweat. I assumed he was in pain and immediately got him out of that awkward position. I cleaned him up and changed his clothes. That entire time, he wouldn't wake up. I thought his breathing was evening out, but took a video and sent it to my husband, mom, and my sister to see what their thoughts were. The video didn't show the shallowness of his breaths. Or his limp demeanor. It only showed him sleeping.

After Kyle woke, we watched him a little longer. Kyle knew something wasn't right as well. Our doctor's office had us bring him in immediately. When I picked David up to leave, I knew there was a huge problem when I noticed his complete lack of head control. When we arrived at our doctor's office, they knew his color was awful, breathing was shallow, and his O2 was 75. I was calling Michael at work to have him come straight there. The ambulance was called. Kyle was crying and not wanting to leave with a friend. I am so glad Michael arrived when the ambulance did. Kyle did finally agree to leave, Michael ran home to grab some necessities, and David and I took a quick ride to the ER. Michael was so quick, he got there very shortly after we arrived.

David slept the entire time. When we got to the hospital, they were finally able to get one blood pressure. And it was low. 75/50 low. His heartrate is normally pretty high (as many kids with neuro issues can be). But that morning, it was raging in the 170's. His limbs were absolutely frozen. They couldn't get an IV or draw blood. In his entire life, I have never seen anyone unable to grab a vein on David. His veins are normally phenomenal. Because of the low pressure and general state in whole, his veins just kept rolling on them. After every nurse in the ER tried for an IV and most of the lab techs tried to get blood, they finally got one IV and about 1ml of blood for labs by using hand warmers to warm him up a little.  The lab questioned if they could even get results with that little amount. The ER dr insisted they better try their hardest.

While we waited for lab results, the staff was amazing. They called the pediatric ICU dr down and she was wonderful. But worried. Extremely worried. We had to try to get his blood pressure back up, so they added a med for that. The ER dr noticed his pupils were enormously different in size. He had a head CT, which was normal. Then labs came back and they weren't good. He was septic and in renal failure. They were showing extremely high white counts. Definitely an infection of some sort was present somewhere. They added bolus after bolus of saline to try to kick his kidneys in gear. And when they added the antibiotics, he needed another IV. More than 50 sticks in his hands, arms, feet, and neck-they were still unable to get one in. The ICU dr was gowned up and ready to do a central line, when one nurse saved the day and somehow secured another one in the crook of his elbow.

We spent 11 hours in the emergency room before he was moved to the ICU. The dr told us we couldn't leave (not that we were going to), because out of an entirely full ICU, David was her most critical patient. I can remember her hugging me, and telling me she had lost a child and was trying her hardest to keep me out of her club. We were so scared and trying to fill our families in while trying to stay calm. Michael is much better at it than me.

A little before midnight, his blood pressure really took a turn for the better and the multiple saline boluses had helped his hydration. Getting labs on him that evening went so much better than it had earlier in the day. And the good news was that his kidney numbers (so many different numbers for different things-lots we had never heard of before) had slightly improved.

All the while, David continued to sleep. And sleep. And sleep. If you know David, he is quite known for his lack of sleep in the hospital. No matter how sick he is. He doesn't sleep. It's exhausting and the reason Michael stays with him on overnights most of the time. He handles lack of sleep much better than I do. I just get overly emotional. The next morning, the PICU dr was leaving for the week and was supposed to be off at 7am. She stayed until noon, waiting on the latest labs to come back. And they came back significantly better. That was they only way she was going to feel comfortable leaving him in someone else's hands. (If you know Dr. Bello at Carle, please give her a shout out from us. She was amazing with us and with David.)

The new dr that came on board for the remainder of David's stay was equally as great. He added a third antibiotic to the mix. I noticed his belly was pretty distended and suggested they do a cleanout while we were there. But before we did that, the new ICU dr wanted a CT of his belly. Which showed exactly what I had thought. Lots of stool. David suffers from chronic constipation due to low tone. This was not our first round with a hospital cleanout, nor will it be our last. So we added golytely through his gtube. David slept through ALL of this. He has never had any type of CT without sedation before. I think his weakness made it that much scarier for me.

After a few days, a ton of diapers (those nurses deserve a huge hand for all they deal with), chest xrays every morning, (Did mention that we could never be sure if pneumonia was present? His xray would look different in every single one of them. Thanks to You-Hoover-Fong for the wonky anatomy.) David was able to wake up for about 5 minutes at a time and start to show a little awareness. His labs were SLOWLY showing improvement. His kidney numbers were coming up and down and his septic numbers were coming down. We had the best nurses. Michael and I took turns going home at night with Kyle, who was having a really difficult time handling this.

Unfortunately, his nothing ever grew on his cultures. And David started having an allergic reaction. To what? We have no clue. He was like a weather vein with his rash. It would start on his face and migrate all over his body. He began to look like the Pillsbury Doughboy. So puffy from all the extra saline boluses. The dr took him off the antibiotics because of the rash and the lack of actually knowing if there had been a bacterial infection needing them.

By Thursday, his numbers were looking much better and there was talk of trying to move him up to the peds floor. But there were no rooms available. On Friday, still no rooms and the ICU dr feared if we sent him up there, he would contract one of the nasty viruses that were floating around on that floor. He chose to discharge us straight from the ICU to go home.

We surprised Kyle on the way home after getting a phone call that morning from his teacher telling us he couldn't get Kyle to stop crying that morning. He was very excited to see David in the van.

When we got home, we watched David like a hawk. He missed another full week of school still trying to recover. I don't know what was raging in his body to cause him so much distress, but his body needed sleep. The first week home, he was sleeping a good 18 hours each day. The next week I sent him to school, still sleeping a lot, but hoping he would be able to start functioning a little more with his typical schedule in place. It took probably a full month for him to get back to "normal" and a full 2 months for me to not be as paranoid about every little thing.

No matter how many times I hear that David might depart this world for a heavenly world before me, doesn't mean I will ever be ready to face that heartache. This was the most terrified I had ever been of facing that fear. I am so grateful to our dr, the ER dr, the PICU drs, our families, our friends, and our school districts for all the love, concern, prayers, and offers of help. Special shout out to my sister for keeping my dogs for a week (they can be a handful) and dealing with her own health stuff. We could not get through events like these without some special people in our lives. And we are so lucky to have all of you. But especially lucky to continue to have life with our boy.

Are You a Teacher?

I guess this week is Teacher Appreciation Week. Or maybe it was last week. I was a little confused about what days it all went down on.


Have you been one of my children's teachers? Or aides? Then this post is for you.

Let's start with the youngest.

In his early school days:
If you've ever had to move mountains to get him to just move at anything other than a snail's pace to go to recess, PE, lunch, library, or to complete work-You are my hero. Believe me. I've done it and I know it wasn't easy. I can remember my mom coming home from grandparent's day in kindergarten to tell me that he was the slowest one in the class on a project.

If you've ever encouraged his strong love of reading-You are my hero. First and second grades were when he became a reading machine. And he still loves reading.

If you've ever had to approach us as parents to tell us that he is unable to focus on work if there are ANY distractions at all (like chairs moving in the room above his)-You are my hero. It was the last thing I'm sure you wanted to do. It was the last thing I wanted to hear. You handled us trying numerous oils, behavioral rewards and consequences, and classroom modifications before we took the plunge of trying medication. And you made us feel better by telling us how great he was doing and how changed he was after starting that medication.

If you've ever just let him have a year with no drama, no calling us, just taking care of business in class and letting him and us just take a little bit of a breather-You are my hero. He began to spread his wings a little bit that year and just be him.

If you've ever encouraged him to do a voluntary report on any subject he could (he chose tigers)-You are my hero. Because getting him to do anything "extra" in schoolwork is a challenge. I know it and you know it. But because you made it fun and rewarded him, he loved it.

If you've ever had to spend 45 minutes on the phone with me trying to come up with a plan to help him deal with the loss of our dog-You are my hero. That was a super difficult time for all of us. Thank you for helping us through it. And we made it together.

If you've ever taken an interest in something he loves to do and not let him just be a "backseat passenger" in your classroom-You are my hero.

If you've ever ran a 5K with him, and probably slowed your own time down by keeping an eye on a little person while running-You are my hero. That made him feel like a complete rock star for at least a week, despite it not being his best time.

I so appreciate every one of these teacher that have made an impact on Kyle's life in some way or another.


And let's move on to the old one. This could get interesting. These teachers and aides do so much that I couldn't do.....

This will all cover all years. Because while David's body has grown, his mind has not. So it will just cover you all.

If you've ever been peed on, pooped on, or puked on by my son and not cursed at me or him while he was doing it-You are a Saint. For real. Because I know that choice words come out of my mouth when that happens here. It isn't a good time, there's not finding the silver lining. It's just all gross in general. And if you have cursed me at those times-then you're human and I totally don't blame you.

If you've ever just changed his diaper in general-You are my hero. Because it is one less for me to change. And because he can now throat-kick you in the process and cause temporary loss of breathing.

And somewhat related to the last part of that one.
If you've ever been bitten, hit, scratched, kicked, punched, head-butted, etc by my child. First-I'm sorry. Second-You are my hero. I've gone through all of those. It sucks. But he's mine which makes it a little easier. But he's NOT yours. And you still like him.

If you've ever had a pediasure or ensure shower because of my child's wild ways during a feeding-You are my hero. It means you've probably gone the rest of the day smelling of vanilla formula. And being sticky. Ensure showers are something you just need a real shower to feel clean and un-sticky afterwards.

If you've ever called me a little panicked because there was just something not quite right, but you couldn't put your finger on it-You are my hero. It means you know him well enough to know that he's not quite right. We are a small club in regards to knowing him so well inside and out.

If you've laughed with him and loved on him-You are my hero. His quality of life is my number one goal for him. You are an essential part to his quality and we love you all for it.


If you are a teacher, but never been a teacher of my kids----You are still my hero. Because I almost guarantee that you've gone through a lot of those things my kids' teachers have gone through. I'll be honest and say I hope most of what you relate to are the top part of my post---but either way----you do so much for our youth. And I hope you're student's parents appreciate you on any given day.

Happy Teacher's Appreciation Week!
(Or was it last week???)

Eleven and Crazy

May 9, 2006

He came early. Yet he was stubborn enough to force me to have a C-section that day.

He was a cranky baby. But he lit up my world.

He was a serious toddler. But could laugh like no one was watching. 

May 9, 2017

He doesn't wake up well on school mornings. But on weekends, he gets up to capture every moment of his days off.

He can be SO cranky and pre-teenish.  Sometimes he makes my head spin. But he also loves hard.

He is still a serious kid. But when he laughs, he laughs hard.

So many people only see the side of Kyle that is serious and shy. Who would prefer to let the world look right past him. He has a hard time expressing himself and doesn't want to be in a situation that might cause unwanted attention.

But he is so much more than that. He is silly, and crazy, and fun. He gets angry fast, and frustrated just as quickly. He tackles running. Even when he's not the fastest. He often comes in 4th place in his age group--technically not being recognized for that. But he keeps running. He has dreams and ambitions. Some I'm sure will change. While a lot will come to fruition if he can figure out how to catch them.

Snapchat is our "thing" to do. When you have a pre-teen, you take the opportunity to seize those moments. Snapchat Kyle shows how funny, crazy, and silly he really is. The side of him he hides at school and other places we go. The side of him that's slowly emerging, but it takes a lot of coaxing to get out of him.  I wanted to share this part of him with you. The part that he hides a lot 😊 

He doesn't always stop to smell the roses. But he stops to smell the unicorn farts :)

His love for animals is unmatched. He can definitely become one with them.

He loves characters. He is quite the character himself. Harry Potter being his current favorite, but Scooby has always been a fave and he loves Groot!

He's got mad respect for the elderly.

He might not be the "coolest" kid in school. But he's the coolest 11 year old to me.

But not cool enough to skip snapchat time with his mom or brother.

 I have no words for this one. LOL

           

         

I guess what I want him to continue to do is be him. Serious, silly, crazy, mad, frustrated, smart, inquisitive, inspiring, happy, bossy, stubborn, lovable him.

He is such an intricate part of us. Having him was like playing roulette. He challenges me. Every. Single. Day. In good ways and bad way.

Keep chasing those dreams, Kyle. Happy 11th Birthday.

Amazing

First let me start by saying that each time I log back into my account here, I am reminded that I did not finish my post about David's hospitalization. It's sitting as a draft and words are written, but I'm not sure how to complete it or how to even sort my words into formed emotions yet. I will. But not yet.


Let's get to today's post.

Kyle and I have some of our most profound conversations in the van driving to & from various places (as well as some of our most ridiculous). It's one of the few places that I have his attention (if he doesn't have a book, tablet, or phone in his hand.)

We drove to Champaign unexpectedly in the rain today to have Kyle's ears checked out. All is good, but he's been complaining for 5-6 days now and we just wanted them to be checked. Just some allergy and wax crud-nothing abnormal or new with him.

On the way home he was telling me his "plans". He has "plans" for everything. And they change. Repeatedly and often. Today's plans were for his hikes through the mountains with David one day. Yesterday his plans included the best way to train the dog and how many popsicles he could eat in a day. Seriously. His thoughts range from silly to serious on a daily basis. He is 10 after all (but almost 11.)

We talked about what he might have to do to obtain some of these goals and how he might eventually have to reign some of those ideas and plans in to make a cohesive list. One that's obtainable. I told him that one day he can do amazing things if he puts his mind to it.

He told me I already did an amazing thing. "You take care of David. That's amazing. I don't think a lot of parents would take care of David."

Well. He's wrong. If  you were David's parents, you would take care of him. At least the majority of parents would.  You would see him smile, and you would hear his laugh and you'd smile and laugh with him. You would see his anguish and hear his cry and you would feel that so deep inside that you would cry out in angst for him. You would see his determination and see his happiness when he accomplished the simplest task (like getting a favorite hat out from under a pile of toys) and you would feel the same pride.

It's not easy. It's gotten so much harder. And I know it's going to get even harder. Aging for all of us is making this harder. But I'll do it. Because he's mine. And I really can't imagine not taking care of my child. Being their mom is really what I was meant to be. I feel the same things for my kids that you do for yours.

I feel the same things about Kyle. When he's happy, I'm happy. When he is sad, I'm sad. When he feels accomplished, I feel the same. When he talks about racing or hiking with David, I feel proud.

It's all the same. But it's all different. Different kids, different worlds. But the same world.

As we pulled into Farmer City, he added "And you take care of me. And I KNOW that's not easy."

LOL. No. Definitely not easy. But I love him all the same. But different. It's a constant pull in different, but the same directions. Which makes no sense. But makes all the sense. If that makes sense :)

Where they are, I feel joy.