it's been a rough afternoon for connor man.

 he's extremely agitated, and super uncomfortable.  his little cheek is red, he's been so worked up.

his poor little lip keeps splitting too.  no matter what i put on it, it never seems to heal.  i know i have tried every single product out there.  nothing seems to help.

 he's been whimpering today.

  it's the cutest saddest little noise in the world.

and the grinding of the teeth.  oh how i wish i could make his pain go away so he wouldn't have to grind his little teeth.

 i'm not sure what the discomfort is about this afternoon, breathing? stomach? both?

i just know that he is such a soldier.  he endures so much every day, all day long.  

 he is my greatest example of strength and courage.

he is my hero.

i love my sweet boy.

ahhh.......so it's been a bit of an emotional/stressful/good/sad day for me today.  spent hours this morning dealing with some of the personal things in my life.  finally moving forward with things that have been ongoing for a while now.  (i'm going to be very vague here, because i don't think it's really necessary to give a whole lot of details, even if i want to at times.  i just mostly need to get my feelings out.  so this again may not make a lot of sense)   it's been such a mixture of emotions.....part of me is relieved that things are finally happening and moving forward, but it's been so stressful for me going through all this.  i hate conflict!  i just want to make everything right for everyone, no matter what, and feel so guilty if things aren't perfect for everyone. 

i want aubrey to not have to experience any sadness or hurt or be effected by any of it!  (i can wish, can't i?)  i've done my best to try and make things as easy and safe for her as possible and i hope she can feel that.  i love my kids so much and just feel sad that i couldn't give them the 'ideal family' situation. 

so there's a part of me that's very relieved about today, but the other part is just sad.  sad for the loss of that ideal world for aubrey, even if we've been prepared for it for a while now.  no matter the situation or how good or bad the outcome of these types of things, there is one thing it always is----- hard.   but hopefully this will be the beginning of a fresh start........with endless possibilities. 

so i finally got the denial letter from our insurance company saying they won't cover a car seat for connor earlier this week. that was a victory in and of itself.  i gave it to connor's physical therapist at school yesterday and she said that she heard back today from the foundation we had applied for help from.........and it looks like they are willing to pay for the car seat for my boy!  the total cost comes to over $1200.00.....which is so sad to me, that something so necessary costs so much.   this is great news that they are willing to help me, but it's also so hard for me to feel okay about accepting this much help.  i don't feel like i deserve all of this.  i know my son does, but i have such a hard time feeling okay about receiving so much.  i am grateful beyond measure, but i can't help but feeling like i shouldn't be taking this help, there must be hundreds of people that deserve it more than me, or need it more.  i guess i'm just disappointed that i can't do it myself, i wish i could do everything for my sweet boy.  i said to aubrey today, i wish i had millions of dollars so that i could just give it all away! (minus the amount i would keep for my tootsie roll needs, obviously)  i would love to be able to help every person i see on the corner, every child that needs expensive equipment, every child who goes to bed hungry, every family with mountains of medical bills stacked up (i guess i'd have to pay my own too),  or just the everyday person struggling with life.  i wish i could do more!!!  

so it's just a roller coaster of emotions for me about this carseat.......extreme happiness about my beautiful boy possibly having a seat that fits and supports him.  and extreme stress/guilt about having to accept that i need help to get it.  so yay!/sigh......

i've been looking through the pictures on my computer tonight.  these pictures from a couple years back have me remembering.......it was a hard time.  connor was so fragile.  this was at a time where his doctors didn't think he would make it through the next year.  they had me hurry and apply for a Make-A-Wish for connor......he was so fragile and so thin and just not doing well. 

 i could feel every single bone in his body when i picked him up.  he was just so heartbreakingly little.

this was a rough time for me, it seemed like every day was so frantic.  i felt like he was just disappearing before my eyes and i couldn't do anything about it!!

 at this point  in time connor was throwing up ALL the time.  he couldn't keep anything in it seemed like.  he had a G tube then, meaning the food was going straight into his stomach.  i would have bowls and towels all over the house, always close by because i would need them constantly.  aubrey knew that when i yelled 'bowl!'  she needed to come bring me one----fast.  this was so hard on his little body.  and it was so painful for me to watch him gagging and retching all day long and not be able to help him.

because he was so frail and weak he was having trouble even producing a cough---which was dangerous for him because he aspirates and needs to be able to get his secretions out of his airway.  

so we were able to get this machine called 'The Vest', typically used for patients with Cystic Fybrosis.  it basically attaches to those hoses and then just shakes the living daylights out of him while it's on.   it's supposed to loosen all the mucus in his chest so it can be expelled easier.  but this didn't really help him because he still just didn't have the energy to produce a cough.   but aubrey liked helping him with his 'shake sessions'. <3

he was so fragile for so long that they were going to put a central line in his chest to get him nutrition that way, but they decided to try and move his tube to a GJ first, to see if he could handle that.  we had some complications at first with the GJ, but after having moved his tube down to his intestines and bypassing his stomach completely, slowly he started to gain weight.......and now he's such a big boy!  

i was so relieved something had finally helped my beautiful boy.  he still has trouble producing a cough because of his overall loss of muscle tone, but with some pounding he does manage to get some junk up.  then mommy's there to suction :)

looking back over this journey i've been on with my son, i'm just so grateful for each breath, each second, each day that i get to spend with him.  i cherish every moment. <3

 

happy sunday!

 it's been a good sunday.  going to church and being able to feel the Spirit is something i look forward to every week.  which is something i never would have thought i would say a couple years ago.  to be honest, i always thought church was well, pretty darn boring.  i never understood those people who seemed so excited about going......and now i'm one of 'those people'!  i get it.  i honestly love going and learning about the gospel and the peaceful feeling i get while i'm there is so wonderful to me.

it just feels like where we need to be.  

the love aubrey has for her brother is truly Christ-like.  little children are so amazing to watch. they are so pure and innocent and close to God.  something i need to try and emulate more each day.

i learn so much from my children!

i am so grateful for the gospel of Jesus Christ and for how it has changed, no---how it has helped me change my own life.  even though my life may be as  crazy and stressful and out of control as it has ever been, i feel so much more complete with the gospel in my life.  like no matter what, everything will be okay.  somehow.  someway. i believe it will be.  i believe we will be.  

today has been an 'off' day for me.  i'm just feeling......too much.  i am extra sad, extra irritable, extra worried, extra lonely, extra jealous, extra everything yucky.   it's extra annoying when i have these days. 

all day long i've felt like crying, or screaming, then crying again.  i don't actually do any of those things, but i just feel like i'm going to.  not such a great feeling. :(

it's on days like today that i'm glad i started a blog so i can at least get some of this out of my head.   it may not make any sense to anyone else, and certainly isn't something that's interesting to read about, but i thinks it helps for me to just get it out.  if only if would now stay out!! 

i will try and focus on good things, i will go give my babies a hug.  and hopefully tomorrow will be a better day......i'm extra hopeful.

connor completed his first full week of preschool this week.  he started going the full 4 days instead of 3.   i think he did just fine, he slept most of one day, but other than that i think he did okay.  i however, was a little out of sorts......when i'm not with him i just feel like something's missing.  and it is, a part of me is missing when we're not together.  connor is so much a part of me that i just feel incomplete when i'm away from him. 

this may sound strange, but i swear that i can feel some of the things he's feeling, and not just emotionally but physically too.  his body and soul are connected to me in a way that is indescribable.  when he gets a bloody nose, 99% of the time mine will start bleeding too.  when he grinds his teeth i'm grinding mine too.  when he feels sad or is going through his 'frantic spells' i can feel every bit of it deep in my soul.  every ounce of my being is intertwined with his.  i love him so incredibly much, i hope that he can feel that love the same way i can feel his pain.  i feel his love, too.  he has this way of looking at me, or even if his eyes are closed i'll rub my nose against his cheek and he makes this little sighing noise and raises his eyebrows, and it's the sweetest thing he 'says' to me. 

part of me is missing when aubrey is away too.  when she's gone for the night i just don't feel whole. 

years and years ago, i met a friend (one of my best) who had gone through so much in her life that it was hard to believe the strength that she still possessed.  lots of people would have just given up, but not her.  she described it to me as having this 'little blue flame' inside of her that just wouldn't burn out.  no matter how windy it got or how hard the storms raged against her, her little blue flame was still there, burning enough to keep her alive. 

well my kids are my flame.  when aubrey was born she lit a fire in me that i hadn't ever known before.  she gave me such purpose, so many reasons to live for that i didn't know existed.   and connor, my special, sweet, beautiful boy is my little blue flame.  he is my fire, he is refining me every day, molding me into what i hope is a better person than the day before.  i learn far more from my children than i could ever teach them.  i am so in love with my kids.  they really do complete me.