I have to vent somewhere. I know family and friends are there for me, but truly no one can really understand what I, as a mom of a baby with hydrocephalus, is going through. If I need them I have so many people to rely on and talk to, and I appreciate every minute anyone spends thinking of and praying for Trey, but being mom is different. I spend every minute of every day wondering how he is feeling, if Stephan and I made the right decision, WHEN are we going to have a shunt revision, is he going to develop "normally", will he have a "normal" active childhood....
There are nights where Trey only sleeps a total of 3-4 hours (and maybe 10 hours all day) and I think "Does he need to go to the neurosurgeon-is something wrong?" Then there are days when he sleeps 20 hours that day and I wonder the same thing. He never does the same thing one day to the next as hard as I try to keep his days similar. His eating and sleeping patterns are always different, I have tried all different kinds of schedules and he always alters them. I am NOT going to keep my baby from eating, and trying to keep him awake when he is tired is so hard on everyone in the house.
He is a beautiful little boy and for the most part he is happy. I am taking it one day at a time, but I can't help but think he is a little behind on the development spectrum. He sits for at least an hour playing contently and can stand, but there is no crawling, rolling, no first words yet, no teeth-At this age (almost 8 months) Ryne had met all of these milestones and surpassed them. I know it is not fair to compare my children, but come on-you try and not compare your two kids-Yeah right!!
Sometimes I feel so alone in taking care of the boys. I KNOW I am not but when it is you spending 20 hours alone with two kids it can be quite overwhelming. Ryne starts school in 3 weeks, and I will then enroll Trey in Gymboree classes so that will help break up the day. I feel so bad putting so much pressure on Stephan, as he already works so much so I can be a stay at home mom, I don't want to just throw the kids at him when he wakes up. But by the time he wakes up that is all I want to do, give him both boys and lock myself in my bedroom. But I don't and I won't.
I KNOW Trey will make at least one trip to the ER in his childhood, probably several more, so that does not worry me, it is just wondering if I will see the signs and get him to a doctor in time-That is SRESSFUL!!!!
I know this post is all over the place but so is my brain right now. I really appreciate having this media to get everything out, and I understand if no one wants to read this-It is just my ramblings of a worried mom :)
And no I do not want any comments on me being paranoid, and yes I KNOW Trey is a BIG baby. That is getting old-He is a 27 lb 8 months old-yes that is big and yes I know-Ryne didn't weigh that when he was 2. Trey does not eat more than 26-34 oz. a day and no more that 1.5 jars of food. This is NOT more than a "normal" 8 month old, he is just a big boy-THE END!!
I truly do LOVE all of our family and friends and appreciate all the support we get, but sometimes I need to get this all out, Please don't be hurt by any of this. It is not meant to offend anyone or minimize the help we receive. And I do LOVE my boys and would not trade them or my life for anything. Sometimes I just have off days (or weeks) :)
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I so thought I was the only one dealing with a kid who will not keep a schedule. I have tried everything I can to put him on one, but it doesn't work for very long. This past few days I have been having to be up with Levi from 2/3 in the morning till 5/7 in the morning, and then he wants to sleep all day. People just say, well try to keep him up during the day, but it is exausting doing that since I've already been up all night. And I never know if it is due to his hydro and the shunt or if that's just how he his. Right now he's just started to sit up and often topples over, so I always have to be very mindful of him in case he hits his head. Right now I think it's definitely harder than most full time jobs, and I can't imagine how you do it with 2 boys. If you ever need to compare or just talk let me know. (Sorry for the longest comment ever)
ReplyDeleteMy baby isn't a big fan of schedules either. There is some degree of consistency for the most part, but I do see a bit of variation (especially when it comes to meals and amounts eaten) and that drives me nuts. I'm always trying to find the perfect eating and napping schedule, but I can't control my daughter's appetite and tiredness. I've learned to just follow her cues and let live.
ReplyDeleteI applaud you for devoting all of your time and energy to being a SAHM. I'm also a stay-at-home mom (with only one child, though) and it's TOUGH! The second my husand comes home from work, I pass the baby over to him and take an hour for myself - either by reading a magazine, taking a hot shower, etc. So don't feel bad if you need DH to watch your boys for a short period of time in the evenings. Being a SAHM is no easy job!
I know this post is old....but... I really am right there with you on all of this. Yea I know Trey & Aili have completely different conditions, but I have the same feelings, worries, etc. So if you ever need to talk, I'm always open. Right now I am working to get Ail ready to eat some 'real' food by her birtday, so she can eat cake....otherwise I'm going to have to blend her cake up to a puree...hahaha! Aili has her delays too. I sit and worry about her health, her development, her scars, everything all the time. Then I SAH with my toddler and Aili all day, then my 8 year old step son comes home from school and I care for all of them day in and day out, because Daddy is deployed right now. We are in very similar situations...so don't hesitate to talk to me if you need/want to!!
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