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.