Exhaustedly Optimistic

I didn't get much sleep last night between the migraine, justin cranking up the heat and him accidentally smacking me and kneeing me in his sleep. But I was able to get 2 hours sleep after taking a back up tramadol and I feel so much better. I'm even in a good mood. That was the best 2 hours sleep I've had in years. Today I head down to Bakersfield to see a neurologist. He's apparently a neuro surgeon and I'm praying he will have some answers and maybe even solutions to my pain and headaches. I would love to be pain free. I haven't been pain free for years or headache-less in about 5 years and have forgotten what it feels like to feel that way. I don't expect miracles. My goals are realistic. I just want the pain and fatigue to ebb enough so that I can have the energy to play tea party and dolls with Lanie and chase Liam around the house laughing. I want it to ebb enough to where I can sleep again and not have to fight my body just to take care of Liam's medical needs. I shouldn't have to barter and bargain with my body to do these things. It would be nice to not have the simplest things drain me. Today I'm feeling optimistic. There's more to life than pain and it's time I got to experience that. 

Up All Night

Let's face it. The morning after a sleepless night just plain sucks. Thanks to little lamb and absolutely no help because let's face it I'm superwoman (I wish!) I got very little sleep. Liam was up at 2am and wouldn't go back to sleep so we ended up camped out in the living room watching cartoons. Every 10 min or so he'd hand me the remote to change it and if I didn't he screamed at the top of his very very loud lungs. What a lovely way to spend the night. Liam fell asleep for about 20 min until I tried to move him back to his bed. Boy was that a mistake at 6am. He threw a fit and we had to return back to the living room. I being completely exhausted had an outburst of anger and complete despair. I told my self out loud FML. Then was told by hubby to take a chill pill. The same man who slept threw the entire night of crying yet hears my little outburst. Hmm. I took the high road and just walked away. If I had said something it would have been cruel and mean and I somehow mustered the strength and will power to just walk away. I am praying that today will be better even though I am exhausted. I have to "suck it up" and make it through Brightstart and PT and everything else the world has planned for me. No crawling under a rock today. 

#exhausted #cdh #cdhawareness #cdhsucks #upallnight #angry #justleavemebe #iwannabehappytoo

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4/7/14 5:26am

It's one of those nights where I'm even more sleep deprived than normal so more emotional. Really it's been like this for three weeks now. Something has to give. 

Did you know it's a proven scientific fact that those who don't get enough sleep loose brain cells resulting in irreversible brain damage? It affected your memory. Having trouble finding your keys or phone or glasses? Forgot you had then in your hand or in your pocket or on your head? Yep I do! Why? Because I'm sleep deprived and am suffering the ill effects of it. Lame. 

Tonight's trigger is Liam's Gtube. I am so frustrated with feeding tubes and the fact that it's always causing trouble. It's infected again and causing Liam pain. It's just not fair. The poor kid can't catch a break...and I can't catch sleep. (If I had the energy id insert a hysterical laugh here) ;)

He woke up in pain at 2am. Finally as I'm writing this at 5am, he is snoring on the floor. 

Lately I've been experiencing wanting to just take the damn thing out and let him learn to eat by mouth. (That's my depression, anger, frustration and exhaustion working) Logically it wouldn't work. It would cause more problems. 

I'm working so hard to get him to eat more by mouth. Problem is everything he gets sick he just stops and were back at square one. What worked last time usually won't work this time. He's also pretty much ditch the cuppie for the most part as well. It makes me sad and it makes me angry. 

Why angry? Not angry at Liam but angry at CDH, the reason he has these problems. I find that yes I am Infact angry at God. Why would he let Liam be born with CDH? Why would he allow Liam to continue to suffer and have problems? Why would he allow any baby to be born with CDH? I also find myself thanking God. Thank you for allowing my son to survive when so many other haven't. It's a confusing ordeal. 

I'm angry Liam has to have a feeding tube. I am also thankful that feeding tubes saved his life when he stopped eating. The feeding tubes and feeding pump have been the bane of my exsistance since he got it. It's caused so many sleepless nights and frustration. His stoma has caused him so much pain. And through it all Liam is still failure to thrive and not putting any weight on. He's been 22 pounds since June 2013. No matter how much we pump into him he just doesn't grow. So what's the point to all of this? Being as I am extremely exhausted and sleep deprived I just don't know. Maybe tomarrow I'll remember or figure it out. 

But tonight I hate the thing. If we don't keep his stomach wrapped in an ace bandage the gtube falls out or gets pulled out and we (me me me always me) has to put it back in. The bandage can be uncomfortable. Like tonight because his tube is already hurting, any amount of pressure makes it worse. He cries, makes me wanna cry. It's not helping my anxiety. And I know it's not helping Liam either. 

We (me me me) had to flush hi a mediport again today and he wouldn't stop wiggling and crying (don't blame him). In the middle of it I almost broke down crying myself. An anxiety attack just hit and I almost couldn't do it. I thought to myself how unjust and unfair and crappy this all was. I realized right after these thought ran through my head that I was having an anxiety attack so I took a few breathes and sucked it up. Needless to say his mediport got flushed. 

Life is just one miserable mess after another. Liam can't catch a break from being sick. I can't catch any sleep. Were a miserable pair I tell you. But Atleast we have each other <3 <3 <3

Why

In this day and age I wanna know why it's not accepted to have a child with complex medical problems. Why it's not accepted for a mother (or parent) of a child with complex medical problems to be exhausted or have a bad day. 

I want to know why it's ok for a teacher to use a gate that's not supposed to be opened until the bell rings but two seconds after the gate shuts won't let a child through it. A kindergartener at that. 

Rules are rules the school says. Well if rules are rules then the same rules should apply to the lazy teacher who is just too lazy to walk around every morning like she told my daughter too. 

Lanie walked herself to class a few times until we found out she was getting bullied. Then we went and talked to the school office about it. The situation was never actually resolved except that I'm supposed to walk her to class every day. That doesn't solve the bullying. I had explained that I have a son with complex medical issues and there are times where it's not doable to get him out of the car. I explained how he doesn't need to be exposed to germs, flu/RSV band what not but they didn't bat an eye. Infact they didn't care nor were nice about telling me that I still needed to walk her to class. To be truthfully honest I felt like they were treating me as if I was some POS mom who didn't care about her kid and too lazy to walk her to class. 

The fact of the matter is that if you have a child with medical needs the world looks at you like it's your fault and they treat you like crap. When Liam was on oxygen and 24-7 feeding pump and I would have to take him with me out in public people would give me dirty looks. Gee I'm so sorry if your upset by seeing a baby hooked to oxygen and a feeding tube. Get over it! I live with it every day. And don't look at me like in some druggie who couldn't kick te habit while prego. I don't do drugs and my son isn't a drug baby!

I did everything I was supposed to while pregnant. Took all the right meds, ate all the right foods and yet he was still born sick. There is no known cause of CDH. Nothing I did made Liam be born with CDH. There was no way to prevent it. It wasn't my fault. You shouldn't judge people based of the small snip it's of what you see or hear. 

A child growing a huge fit in the middle of the store and the most everyone will automatically judge the parents as bad. What they don't see is the behind the scenes. They don't know if that child has any medical issues. They don't know if the child is easily over stimulated or has autism or what. And they don't care either. The majority of te world thinks that these kids and issues should be locked behind closed doors and hidden away. 

That's the problem with society. They want it all swept under the carpet instead of spreading awareness band acceptence. 

This all leads back to this mornings incident with Lanie trying to get into the Kindegarten playground. After two weeks of hardly any sleep at all and being up since 3am I am exhausted. Liam is sick. He doesn't need to be out in the weather or out exposed to other viruses. I just couldn't find the energy to get Liam out of the car and walk her all the way to the play yard. I just couldn't do it but does anyone understand. Nope. No one even tries too. 

I don't expect a 6 year old to understand but she understand better than any adult. She was upset the teacher was rude to her this morning but understood why we couldn't just walk to class. She was crying when she walked back to me. I held her until the bell rang then sent her on her way. I watched as the same teacher scolded her again and with slumped shoulders she walked through the gate and to class. I wanted to go run and scoup her up and take her home. We could cuddle on the couch and watch cartoons and cry if we wanted too. Just spend out bad day together. But I couldn't do that. She needs school and needs to find her own way to deal with everything. I can't tell her the right way because different thins work for different people. 

I've explained to her teacher that she is more emotional that most kids but it's because all she went trough since Liam was born. She had to brave mommy being gone, then brave NICU daily, having mom and brother ripped away every time Liam got sick. She's been through a lot. More than any kid should have to experience. I warned her teacher that she gets upset at the littlest things and cries at the drop of a hat because her emotions and stress. So when a teacher makes her cry because she's being mean to Lanie I get furious. 

Why is it not accepted to have a medically complex child or for a mom to be exhausted but it's accepted that a teacher uses double standards and is mean or rude to a child accepted?