Thursday, May 3, 2012


So this is a venting post.  I think I generally display a positive all is good persona but I just don't usually talk about the bad days.  Like today, and yesterday, oh and that week I was sick, and...  I get really overwhelmed. And usually shut down.  So I am venting via blog today.  And I do love my kids and my husband but it just sometimes just gets overwhelming because I want more time to enjoy them.  I don't write this for pity either.  This is just part of my story and I want others out there to know that I don't have it all together.  My good days far outweigh the bad, at least I think so.  And my kids are so cute and fun.

Luke by himself takes a lot of care, from feeding, food preparation, suctioning, diapering (he pees and poos a lot), figuring out what he needs/wants when he can't just strait up tell you and he doesn't have facial expression.  This is all while trying to get my 9 month old to not eat the foam off Luke's walker, keep her from all that she is not supposed to get into and picking her up from her numerous falls as she is standing and climbing all over everything.  She also needs to be fed and have food prepared and lately she is taking longer and longer to eat.  She needs to be diapered and after going from a poop a day to 3-4 a day now that her system is working with real food it happens often and she does not like to be changed and cries and is flipping over for most of the time and so has become my least favorite activity.  I would rather change a mongo stinky Luke poo that is everywhere than her.  She is that difficult to change.  I sing, I give her toys, sometimes it works, sometimes it doesn't, and she give no indication which way she is going to go.  She has been super fussy lately because she is teething and wants me all the time.  But she can't have me all the time.  Luke doesn't like to hear her cry but I just can't help it sometimes.  Oh boy is it a circus.

And then there are house hold chores, which only got done last week because I had two nights without nurses and so did some then as well as catch up on all the mundane things like finances and programming Luke's iPad so he can communicate with us better and stuff like that.  And yes I could stand to lose quite a bit of weight but how do I find the time to exercise when I am so tired and can't find the time to do things like clean my house, play with the kids, grocery shop and stuff like that.  And I hurt my knees so I am going off to PT again, which is good because it is like mandatory exercise and makes me have time.  And you ask can't my husband help.  Oh he does, he washes dishes, he makes dinner, he watches the kids when I need to go grocery shopping, when I do clean, when I try to get any of that other stuff done.  He gives them baths, he does most of Luke's trach and stoma care and bedtime routine by himself as I am dealing with Hannah.  He is great and the problem is he doesn't have any free time either, so the more I ask for the tighter he is squeezed.  And because Luke has a trach, there are only three people besides myself that I can leave him with.  I can't just put him in day care a couple of times a week, even if we did have the money.

And I want to do more cool play stuff with them, to get Luke doing more things and make sure I don't leave Hannah behind because we are so concentrated on Luke.  And I like taking care of my own kids.  I like spending time with them and knowing that I am one of their favorite people (dad is the other).  Everybody is happy when dad gets home from work.  And we have realized that him working from 6am-2:30p.m. is a good thing as he is home earlier.  Oh and then dealing with having people in your house every night and basically having someone come to work at your house, which is good because I need to sleep and Luke needs care throughout the night, not continuously but even if I were to sleep in his room and just wake up when he needed suctioning or diapers I would not be sleeping much.

And on top of all this there is the threat of Luke pulling his trach out.  And when he pulls it out he goes down fast.  It's emergency when it happens, and it does happen.

With all of this sometimes the overwhelming part is I have years left before this level of care of the kids decreases.

Some days I find myself with free time and not really sure what to do with it and how to best use it.  But there are a lot of good times in this craziness.  Smiles from Hannah.  Hugs from Luke and just the cute things he does.  Reading to Luke and seeing him get really involved, watching him play with blocks.  He is a great kid and Hannah surprises me almost every day with something new or super cute.  My husband is awesome.  He jumps right in and takes care of us as well as working his super busy job.    I have parents who live close by that help me out and my brother too.  I have a mother-in-law that will come and stay almost once a month for days and helps out doing whatever.

I also am stepping back from my germaphobia.  Yeah!! It is freeing and I am getting there, getting back to a normal level of germ avoidance.  This also creates less work and stress.

I know I am not alone as a mom who is overwhelmed.  So there is my crazy life, and maybe someday I will get back to my hobbies, or at least have things that need to get done more in order.

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