That one teacher. ..

I think everybody has had that one teacher. The teacher that seems to pull a class together and get the kids to LOVE going to school. Learning becomes fun and not a chore. This kind of teacher is a once in a lifetime for the kid.

I still remember my year. It was 6th grade. My teacher loved science, hockey, cows and flying planes. We had a flight simulator in the class, dissected pigs (ew) and had to do income taxes.  It was challenging, but fun. I was a goof off and whether he knew it or not, I loved that class. It was over 20 years ago (omg!) and Ill never forget it.

Ty had that this year. He was actually fortunate enough to have the same teacher (and classmates) last year too! His teacher pushed them, motivated them and encouraged them...for two years.  He is entering Jr high with something he didn't have two years ago. He has learned so much more than just academics. He has learned perseverance, confidence and pride.

His teacher held his class together. They joked and laughed, all while learning.  The kids formed a bond. She set high expectations and pushed them to do their best. She truly gave so much of herself to these kids and genuinely cared.  She visited Ty in the hospital (twice). She cried tears of pride when they presented their businesses.  She loved the kids and it showed. She is amazing. She didn't just teach. She dedicated her time and her hearts to these kids. She cared about their academics, their safety and their emotional well being. She helped me raise my son and prepare him for this scary grown up world.

End of the year gifts are so tough. We never know what to give.  Gift cards are always great, but they don't have much sentiment.  Ty wanted something special for his teacher.  He worked ALL day long... typing thoughts, memories and quotes.  I think it turned out cute. His class made a scrapbook too and I'm sure through the week, we will come up with some more gifts for her (including a gift card).

Deck of Memories

Inside of case: Ty's pic

The back: To Mrs. O
From Ty
2011-2013

Each card has a memory, a quote, an inside joke or a thought about his experience in her class.

 He wrote out 52 thoughts/quotes. Some of them are just simply perfect. Some are inside jokes that I don't even understand. These are some of my favorites he used.
"I will always remember you"-Ty
"Thank you for going above and beyond"-Ty
"You made me a better person"-Ty
"The object of teaching a child is to enable him to get along without his teacher"- Elbert Hubbard
"What a teacher writes on the blackboard of life can never be erased"- Author Unknown
"Teachers touch the future"- Author Unknown
"You helped me see what I could be"- Ty
"A good teacher is like a candle; it consumes itself to light the way for others"- Mustafka Kemal Ataturk
"A teacher affects eternity; he can never tell where his influence stops"- Henry Adams
"Best two years of school EVER"- Ty
"What a teacher is, is more important than what he teaches"- Karl Menninger
"The best teachers teach from the heart, not from the book"- Author Unknown
"You gave me strength"- Ty
"Thanks for always encouraging me"- Ty
"The art of teaching is the art of discovery"- Mark Van Doren
"Thank you for giving me courage"- Ty
"Thank you for dedicating your time and your heart to us"- Ty
"I <3 you!"- Ty




I hope she knows how appreciated and loved she really is. I hope she knows that she gave us peace knowing that through the turmoil we have had at home the past two school years, she was Ty's rock and his stability. She has impacted him forever. She was THAT teacher to him. That's an amazing thing!

What I want for mothers day

Mothers day is quite a holiday. We pack in thanks to our mothers for the entire year...in one day.
My kids always look forward to mothers day. I think its just below Christmas on their important holiday list. But why?
I want mothers day to become mothers year! Skip the cards, kids. They are cute and sweet, but defy the point.
This is what I want for mothers year.
My kids not to suck. No more attitudes. No screaming, fighting, crying and tantrums. Id love to not have to break an ankle trying to navigate their bedrooms full of junk scattered. Id love for someone to just the refrigerator door or flush a toilet when done peeing. I would love to take a bath without kids dangling over the edge playing in my water. Id like to go potty  without someone saying "I see your peepee". Id like a can of Pepsi...untouched and mine.
I want my kids to be healthy. I want them to sleep, eat, play, grow. I don't want to check heartrates and blood pressures. I don't want to do calorie and fluid counts. I would rather chop my arm off than sit in the hospital one more night. I don't want to clean up vomit or diarrhea. Id love a full year of no nebulizer treatments, pulsox machines and feeding pumps. I want regular, healthy kids.
But then...
They wouldn't be who they are. I don't want that. My kids are one of a kind. They make mistakes. They aren't perfect. They have a great understanding of life, are braver than most and see the world in a unique way. They learn to fight their battles. They make me appreciate how lucky I am.
I love that all of my kids still snuggle me. Even Ty, at 12, likes to sit with me and talk. I love that they are secure enough to get pissed at me. They know my love for them is unconditional. I love that they think I'm supermom. They push me further than id ever had pushed myself.
Their giggles are worth it all. The hugs and "I love you" makes a bad day great. When Leeya looks up at me and says "you bef fen" (your my best friend) melts my heart. Watching them become little people is amazing to me. I've got super cool kids, most of the time. I'm lucky to be their mom!
So, I guess I have to take the bad to get the good. Id rather have THESE kids than any other. They are the reason I'm breathing. I love them beyond words. And they know it. That's really all I need for Mother's year.
Maybe the card will be nice again this year too.

Abby changed Leeyas's gtube/tutorial

This is what the AMT mini one balloon button looks like. 

The balloon is what holds the gtube in the stoma .

Abby did her first gtube change (without any help) on Leeya tonight!!!  I'm so impressed with how well she did.
I'm also kinda laughing inside. She is only 10. So many people (adults) get nervous about Leeya's gtube. Its hard for them to believe that its actually quite simple to replace.
I do get it though. I remember being so scared when Jaxson got his gtube placed. Its almost impossible to screw it up though.
Changing the button still is dreaded. Its a little gross and neither Jax or Leeya like it. They cry. It doesn't hurt, it just feels weird. Typically, I change out their tubes every 3 months (or sooner if they pull it out....I have very active kids)


Here's a little photo explanation on *How to change a gtube*.

1. Get your supplies ready. I have the spare button covered in  lubricant, an empty syringe, a syringe with 4ml water, paper towels, baby wipes (out of view) and the plastic blue tee (its an amt mini one thing). 

2. Insert the empty syringe into the side port of the button.( It actually says "BAL" on the spot, so you cant forget. ) Pull out all the water. 

3. Pull out the button. The hole you see is called the stoma. It is the entry to the stomach and does not need to be sterile. It doesn't hurt, but some stomach contents back out. Kinda gross, but no grosser than a little vomit. That's why we use paper towels. Before inserting the new button, we wash the stoma off good.It does close FAST. If a new button isn't inserted quick, it will close. Which the requires either a painful dilation or a new surgery. Some people claim the stoma wont close for an hour. In my experience, it starts closing up almost instantly.

4. Once you wash off the stoma, stick the new button in. Its seriously THAT simple. Just push the stem with the balloon deflated right on the stoma. You may feel a bit of resistance, but its usually because the kid is tightening the stomach muscles. You cant screw this part up. The only place for the new button to go is in the right spot! I'm sure there is a rare occasion that this hasn't gone smooth for someone, but Ive never heard of it.
Once its in, insert the syringe with the water in it and re inflate the balloon. 

And..................Its over! :) The only thing left to do is kisses and snuggles!

Dear judgmental mom...

Dear judgemental mom (*If you need to question if I'm talking about you, then I probably am.),

I'm not perfect, I know that. You make it very clear that you know it too.
I am overprotective. I am too permissive.
My kids are too loud. My kids are too shy.
I spoil them. I don't give them enough. 
My kids don't have enough responsibility. I don't let them be just kids.
I discipline either to strict or too lenient.
The kids are in too many activities or not enough.
I'm well aware of my faults. 

What you don't see is this:
My child is taking her clothes off because she has sensory problems. She gets occupational therapy for that.
My child wears sandals in cool weather...its because she is at an age to take responsibility for her own decisions and I'm trying to teach her to be independent. Nobody has ever died from chilly feet.
My son throws a tantrum or starts crying...its because he is stressed out because you won't stop hounding him to speak to you. He has a speech disorder and is aware that people can't understand him well. He gets embarrassed and that is how he reacts.
I can't be a room mom or volunteer,although id like to. Instead, I'm home taking care of my little ones, doing therapies and appointments. Its not that I don't want to be there, I can't be.
Yes, my younger two kids are tube fed. That wasn't my choice. Its not because its easier. Its because without it, their health was suffering. They won't eat if they get hungry enough. Its not a matter of pickiness. Its a medical condition and if left for battle of the wills, they'd rather starve. 
My car is a mess, I forget to sign permission slips and sometimes(often) I call my kids by the wrong name. I am exhausted a lot and have bad days. However,  I wouldn't have it any other way. My kids are worth it all. (and they know that)

I used to be like you, judgmental mother. I never saw the world like I do now. When I see an 8yr old throwing a temper tantrum, I understand. If I see a 4yr old with a bottle, I get it.  I might not know why, but I know there's a reason.
I don't always make the right choices. I never got an instruction book. Some decisions I make are based entirely on being tired or worn out. There is a reason for that too. 
I like my imperfect life. I like to learn from my mistakes and allow my children to learn from theirs. I'm not afraid to admit to them that Ive screwed up.  They need to know its OK. Nobody is perfect. I'm raising independent, strong and very well loved children. They are happy. They will grow up to be great adults, no matter if they choose to believe me they need a coat on or not.  That's really all that matters.
So, judgemental mother, I hope you understand. I'm not going to grimace at you for all the things I disagree with. I just want you to remember, I already know how imperfect I am.
Sincerely,
Mom of the year

Playing doctor....

How a GJ looks. The ballon holds it in (in theory).
The long tube is threaded down his
stomach into his intestines.

I remember when my older 3 kids  were young. They used to play so nice. They loved playing house, school and...doctor. Back then, they used their crappy plastic stethescopes and looked in eachothers ears. Cute and harmless.


Oh, how things have changed!!

Yesterday, Leeya got her stethescopes out to play doctor with Jax and pulled out Jaxsons GJ tube!! For real. They don't play around with colds. My kids imitate surgical procedures.They take playing doctor to a whole new level. 


AND YES, I flipped my lid. I never claim to have good language, but at the moment I saw Jaxsons gj dangling halfway out of his stoma, I think I beat world record for using the f bomb. There was blood dripping, brown stuff pouring out (no idea wtf that was-his formula is white) and I panicked. Big time. The tube was only half out. I couldn't remember if I pull it out, push it in..or cry.


My first thought, besides F***! Was to call 911. But, after a second, I remembered our prior (2) 911 calls (different kid) and realized that they can't handle this. I need to. Its not a huge deal. I got this.
I grabbed my emergency kit. Inside, I keep a new g tube button, packet of lubrication, a syringe, gauze and tape. I pulled the rest of the gj out and popped in a shiny new g button. It went in fast and easy. Relief!
I immediately took pics and posted on my feeding tube support group for reassurance. I was still super panicky. These women are smarter and faster than any Dr we have dealt with. I cleaned up the blood and goo and paged the GI on call.

 
No response from GI, but Jax was happy by now and playing again. I set him up to sleep on the couch so I could keep a close eye. He fell right asleep. I totally overreacted with my panic. I just wasn't prepared. He was fine. It hurt me much more than it hurt him.

  After a million phonecalls and pages, GI finally called back. (today) Jaxson is to start g feeds at a rate of 40ml/hr. If he starts puking, he will need to be admitted until they get his size tube in stock. This could be as early as Monday, but most likely Wednesday. Because it will be so long without nutrition, they will need to start him on tpn temporarily. (which for the record, I think it completely ridiculous) Barf. It also means I will need a babysitter for my other 4 peeps. Its also Skylan's gymnastics banquet and Mothers Day weekend. Ugh.


Im hoping I can keep him hydrated at home. REALLY hoping. So far, so good enough. :) 

*Update: Sedation team called. Jax is now scheduled for a new, shiny GJ tube on Monday afternoon!

A different world

5 years ago, I was oblivious to the world around me. I was living a pretty typical life with a few bumps in the road.

Yea, I heard of kids with illnesses that were rare, but I never actually saw it. I never even thought about it, to be honest. 

I had no idea what a feeding tube really was. I thought it was for old people on hospice. Never heard if an ng, nj, gj tube or tpn. I had no clue how many people, let alone children, depended on these things to survive.

I knew nothing about heartrates or o2 levels. I didn't know the difference between sedation and intubation. Gastroperisis, dysautonomia and mitochondrial disease weren't in my vocabulary. Id never met a pt, slp, dietician or ot. Now all those things are an every week occurence. 

5 years ago, I didn't know some of my friends. I met a large group of moms through Facebook support groups after Jaxson got his tube.  A few of these moms have become my best friends. Its awesome to be able to talk to them, understand them and them understand me.

I've also watched some of these kids from facebook-land  grow up. I've seen their successes and celebrated with them. I've watched them have surgeries and hospitalizations, and I've cried for them. A few have passed away. At this exact moment, there are a few fighting for their life. Although I don't know them all face to face, I've watched their journeys and grown to love them. It hurts to see so much pain.

It reminds me how fortunate I am. Its just so different now. All the things that used to worry me...I can't even remember what they were anymore. My family has struggled so much. My heart has changed and my perception of things are scewed. I have seen too much. I value life so much more than I ever did and I think I am a better person and mom for It.  I try to remember to appreciate what I have. Even when I feel like my life is crumbling to pieces, I  know things could be much worse. I'm glad they aren't. I still get sad over *minor* things of course, but at the end if the day, I know I'm pretty lucky.

Entering this world of medically complex, special needs or whatever you'd call it...sucks. I had no idea being a mom would be so hard. Its not supposed to be. But I have learned a lot and so have my kids. I will never let a day pass that I don't hug each one of my babies and tell them I love them. I will always try to remember that my bad day is a day someone else is praying to have.

Spring/Summer bucket list

Spring has sprung and summer is on it's way. With five kids, we need some serious planning to keep us busy. A lot of stuff is free. Its easy to get cooped up bored and wondering what to do. I compile a list each season of things to accomplish, so I figured Id share it. Of course, some things can be done more than once and we always add as we go. Its also fun to watch them spend days climbing trees and running wild.

1. Play in the mud

2. Dance in the rain/jump puddles

3. Body paint

4. Fly a kite

5. Go park hopping

6. Visit the zoo

7. Go on a nature walk

8. Family bike ride

9. Have a Lemonade stand

10. Wash the car, wagons, bikes

11. Backyard campfire/smores

12. Catch roly polies and make a roly poly house

13. Swim

14. Play at a creek

15. Goto a carnival

16. Visit the beach

17. Go camping

18. Plant a garden

19. Go on a picnic

20. Goto a parade

21. Make a canvas of paint filled balloons (have kids throw them)

22. Visit the Children's garden

23. Take a trainride downtown Chicago

24. Goto movies in the park

25. Strawberry picking

26. Bowling-rainy day

27. Let kids loose on running track

28. Children's museum- rainy day

29. Millennium park in Chicago

30. Waterpark

31. Tie dye towels

32. Go for icecream

33. Slip and slide on shaving cream

34. Mini golf

35. Visit a farm

36. Hot air balloon festival

37. Sprinkler park

38. Catch lightning bugs

39. Have a board game day

40. Make/blow giant bubbles

41. Go to library

42. Paint rocks

43. Visit the firestation

44. Make/play sidewalk paint

45. Water balloon/water gun fight

46. Play in the sprinkler

47. Make homemade icecream

48. Make melted crayons rocks

49. Have an indoor "movie theatre"

50. Hulahoop/hopscotch/jumprope

I love summer. I love watching my kids laugh and have fun. I think it's one of the best feelings in the world. "Kids grow up so fast" is so cliche, but it'so true.  I can't wait til the rain stops, the sun comes out and it gets warm!!! I hope my kids grow up and remember our fun times.

I need an instruction book.

I'm going to say it bluntly. Kids are tough little creatures. They cry, scream and are messy. Most days, I feel like I have no idea what the hell I'm doing. I need an instruction book.

When I was pregnant with them, I read the "What to Expect when your Expecting" books, cover to cover. I talked to my belly and envisioned my precious baby, the one that would NEVER hit, NEVER be that bratty, snot nosed kid in Walmart that makes you need excedrin and my kids would NEVER talk back.  I was going to be the best mom ever. I was going to be patient, creative and teach them all the right things. IT DIDN'T WORK.
Once they were born (well...#1, #2 and semi with #3) I did everything "right". I spent hours upon hours of enriching their little brains. I read books to them before they could even focus their eyes, we sang songs and did baby stretches. I made their babyfood out of organic produce, made homemade millet cereals and even made them their fresh carrot juice. IT DIDN'T WORK.

As they got older I kept trying to be that "perfect" mom. I've put them in soccer, baseball, tap, jazz, gymnastics ,Tae kwon do, baby gyms, mommy and me classes and more, cheering them on like they were superstars. I spent so much time with each child individually and treasured every moment. (almost) We have crafted and baked and talked so much. We have spent so much time making good memories and having fun.

But, guess what? IT DIDN'T WORK.  I got a tad lazy. I got tired to the point of being overwhelmed. Add in 3 more kids, 2 with unexpected medical issues. Financial strain and then thrown into single mommyhood. The past 4 years have been filled with sleepless nights, hundreds of hours of therapy for the littles, surgeries, Dr appts. And guilt. LOTS of guilt. Excuses, excuses though. I could have the most typical life and to be quite honest, Id still probably have a similar outcome. Kids are just monsters sometimes and all moms need a rest.

I try, don't get me wrong. I still read on the best techniques. I still cook bizarre dinners and sneak nasty pine nut oil in their food. I realized the need to buy the "Super Nanny" book. I have tons of boards on Pinterest that I barely use, so I can be that "perfect mom" . We still have fun and get messy. We still make great memories. I still try to teach them right from wrong and how to make good choices.  To be honest though, some days are just focused on surviving til bedtime.

I have 5 small people here with their own agenda. They have very strong personalities. I've got tantrums, rage issues, adhd and sibling rivalry that can draw blood. They sometimes do things and say things that I never imagined possible. They suprise me daily. I've been "the worst mom ever" according to a few and I think they have all 5 have officially told me they hate me at some point (good thing Leeyas in speech?!). I have a naked child covered in nutella frequently and I don't even think I can safely make my way across any of their bedroom floors. It would be comical on a reality show.

I've lost best friends because of my inability to keep my kids in order and I've become a bad friend in the process of trying to keep my own sanity. I was too preoccupied with my own chaos to help them with their struggles. I can't fix that now and it breaks my heart. I wish I could. I'm very sorry for that.

I love my kids. I really, really do. I just wish someone would have warned me that the millet cereal I slaved over wouldn't help down the line with their hormonal outbursts and constant attitudes. Who knew?!

So, To all you new moms out there: chances are that your kids will wear you out too at one point or another. They will do all the things you can't even imagine. There is no "perfect mom" and you will never have a "perfect kid". Just enjoy what you have and keep on pushing through.

I still have high hopes they will grow up to be productive, genuinely nice people. They can be great kids, really. Each kid has their own unique qualities that make them awesome. They do have good hearts. I'm certain of that and we will all survive. They know they are loved unconditionally. 


 I also need to accept that I will never be the "perfect mom".Unless, of course,  I had that damn instruction book....

A whole year!

Its been a full year since I entered single mommyhood. One year ago, I had to explain to my babies that their dad was gone and there was no chance he was coming back to live. I had high hope that he would still be very involved in their lives, that they wouldn't suffer from the loss of their father.  I was wrong. For the past year, its been rare visits and not so much quality time. Besides 2 of our hospital stays, he hasn't spent more than a few hours with them at a time. Its been hard for them to adjust to.

As a now-single mom of 5, its been hard on me too. How do I do it all? How do I be everywhere I need to be physically and emotionally? I've been burned out and exhausted. I bitch and moan and pick myself back up. But, even on the worst days, I have no regrets. If I had the opportunity to do it all over again, id do it the same.  I wouldn't trade my kids for anything and I can't imagine life without them. They are incredible kids who will grow to be amazing people. They are such a gift to me and the world.

I can't replace their dad and I don't want to. I want him to be there for them. My boys need a dad to teach them boy stuff. I don't fish, I suck at sports and I know nothing about puberty or any of that stuff. My girls need to be little princesses. They should be going to daddy daughter dances and being told how beautiful they are from him.   I just hope he realizes it soon before its too late. It hurts me so bad that they dont have that. I'm hoping in time it will get easier. Either their dad will step up fully or ill be able to fill in that gap somehow.



I've learned a lot about myself in the past year. I spent 16 years of my life as an extension of someone and now I'm my own woman. I think its been great. I know that I am capable. I am stronger than I like to admit. I deserve more than I had gotten and that I am important.  I'm a really good mom. I still make too many mistakes, but I'm going to learn from them. I am thinking about what I want to do with my life after the kids are all in school.  I would love to start taking college classes and start volunteering. I want to learn to sew and grow a garden. 

I've learned who my true friends are. I have a few really awesome friends who have helped with my kids, just so i could keep some of my sanity.  I have a great neighbor that I know I can count on if I need anything. He has saved my car battery more than once.  I have someone special to me that treats me great and makes me very happy. Its such a great feeling knowing I'm not alone. 

The past year has been rough. We have had Leeya's gtube surgery,  Ty's hospitalizations, Jaxson's hospital stay and gj placement, at least a dozen ER trips and too many Dr appointments. I've learned of a few more diagnosises for my kids. I've battled sleepless nights, sibling arguements and tantrums all day. I've yelled too much.  I've wiped too many tears, from the kids and from me.  With no relief. I can't use that saying "just wait til your father gets home" like I used to.

We have also had some really great memories in the past year. I've watched them grow a year older and I cherish every moment (almost).  We made it to the zoo, the beach, museums, carnivals, their first train ride to Chicago and millions of parks. We have baked and crafted. They enjoyed body painting, dance parties, playing in the mud, swimming and building snowmen. I've shared the excitement of the Easter bunny and Santa with them.

I'm excited to see what this next year brings.  We will make even more memories and have more fun. I feel more confident than I did last year and that will only make it easier. Tyler will be starting Junior high (Omg!) Abby is planning on starting a fundraising event (undecided what cause still) . Skylan will continue her gymnastics. Jaxson wants to start soccer and football and is entering kindergarten in the fall. Leeya  will most likely start preschool this fall and Im hoping to enroll her in gymnastics.
I'm determined to give my babies the life they deserve... single, exhausted mom and all.

I need sleeeeeeeep

Its 2am. My kids wake up for school in about 4 1/2 hours! I can't sleep....again. This is insane. I'm exhausted, physically and mentally, but I have too much on my mind.
It was a rough weekend. I yelled too much, there were too many tantrums and I didn't get anything checked off my mental to-do list. I can't even count how many times Leeya flooded the bathroom. She even managed to fingerpaint the couch with yogurt. Jax is her partner in crime. Skylan has been  extra adhd-ish. She is so hard to get through to when she's in this funk.  Ty and Abby are so moody.  Its been a constant battle to keep up.
Im laying here next to my snoring, dripping with sweat Jaxson, listening to the feeding pump obnoxiously pumping...and I just can't stop thinking about how to make changes.
I need to regain order. I need to clean, cook and bake and make crafts. My kids need mommy time, one on one. The house and yard are a mess, the dogs need grooming, I need to schedule Dr appts and dental exams. I need to go grocery shopping and clean out the fridge. The list is endless. I also need me time. How do I do it all?
I have no idea.
I just know something needs to change. This week has to be better.  And I need sleep.

We have weight gain. Yes, that's exciting!

Friday, Leeya had her weight check with our EI dietician. Of course, Jaxson was home so I was able to throw him on the scale. I was super excited to see how well he was doing. (Leeya too, but his change is much more dramatic)
I am so proud to announce....we have weight gain in both kids!!!
Woohooo. I know, I know. Its not a huge deal to most people. But when its a struggle to get a gain, its a HUGE success!
Leeya is 31 months now. Which is crazy in itself. She's so old so fast. She's a little girl now, not so much a baby :( She is up to 21lbs 10oz and 33 3/4 Inches tall.
Jaxson is 4 1/2. He was 29lbs when discharged from the hospital with his New gj tube on March 15th. He is already 31lbs 14oz!!!!!! (and 39 1/2inches). He looks so chubby to me ;)
Its really amazing what food can do for a kid. Its amazing that something as "simple" as a tube can bring so much more energy and keep them so healthy.

My first blogging experience.....

Tonight I was lecturing my oldest son, Ty. I was trying to explain to him that THE WORLD OWES US NOTHING. It's very easy to say that, isnt it? But honestly, for some reason we all feel entitled to have the perfect life. I am at fault too for this most definitely. 
Life isnt fair. Its not fair that I am a single mom now trying my ass off to raise 5 beautiful kids on my own, all while their dad is playing house with his 20 yr old girlfriend. Its not fair that we are drowning in debt and I have no idea how to fix it. 

It royally sucks that my oldest son Ty has dysautonomia and that I have to watch his fluid intakes and calories like a hawk. It sucks that the mere act of standing up gives him tachycardia. 
It also sucks ass that my 10 year old has crappy endurance and so many muscle aches that she cant keep up with her friends and had to quit the activities she loved.
It blows that my 8 yr old is dependant on meds to get through her day because her ADHD overpowers her. 
I hate that my 4 yr olds stomach no longer works and all his nutrition is pumped through a tube into his intestines. And my 2 yr old has the same, but not as severe. I have no idea what their future holds and I live in fear that they will get worse.
I hate my life some days, to be perfectly honest. I hate setting up feeding bags, draining stomach contents, passing out meds, checking vitals. I hate that having prednisone in the house is more necessary than a bandaid. That Id actually need more fingers and toes to count up the procedures and surgeries my kids have had. My house is always a mess, there will never be enough time or somedays... days are too long and its too much time. My kids fight too much and I yell too much. It's just not cute here like it's cute on Full House. 
Ive always wanted more. More fun, more memories, more traditions. MY kids would get along. MY kids would be perfect. MY kids would be the best damn kids in the neighborhood. 
Guess what? That never will happen. 
We do dance parties and crafts and day trips. I tell them I love them every.singe.day. Even when I am so mad at them and I want to just throw them (I never actually do throw them), I remind them that I love them. But yet, they feel cheated. They want more.

In reality, we get what we are handed. My kids are the way they are for a reason. I cant change the situation (nor would I change any of them for the world). I CAN change how I react to it. Id say most days, we all do well. Im sure though, we can do better. 
Its been a rough few days here especially. Everyone is going a little nutty. The kids have been fighting, the house is trashed, Im just totally out of energy. Its easy to feel sorry for myself on days like these. I can see why my son was feeling sorry for himself. Life isnt as easy as it "should" be. 
I KNOW things could be worse. Ive seen it. I have friends Ive met in the special needs community that go through MUCH worse.  Our family really is lucky. I guess I compare it to when I get a call from a friend. Her baby has an ear infection. I understand that ear infections suck. Ive been there. But at that moment, I want to scream. ITS JUST AN EAR! Im certain I have friends out there thinking, its just a tube, its just an airway, its just ADD. I get that. I know it could be much worse. I just wish I was the mom calling about the ear infection. 
After my lecture/yelling/discussion (whatever you'd call it), I realize that although my kids have adjusted to this chaos quite well, they still need me to be strong and help them learn to accept things. In order to do that, I need to learn to accept things better. Im still not completely there. Im going to try harder. I have to.