Saturday, April 8, 2017

Hey guysss

Harlow seems to be doing so much better she still gets fussy but normal fussy not extreme pain fussy so we are so grateful for that because we're on the right track but now we have to try a new formula in the keto family in hopes that it works if not then back to the drawing board... now that I have my baby back again I also have to start over it's another new harlow and another new realization that she isn't a normal baby that she does have somthing wrong with her that's far more then just stomach issues . It's really hard for me because I feel like I hide behind each issue to avoid the giant one starring me in the face I know what is wrong I can't fix it so I find other things to focus on but now that she's much calmer it's really hard because she just sits and chills which is great and all when I'm trying to do laundry but not so much when I realize playing with her isn't a option right now. Getting a response from harlow isn't somthing that comes easy between her eye sight and her brain issues she doesn't have a lot of wiggle room in that department God what I would give for a smile mamas out there pleaseeeee take in your baby's smiles and laughs godddd I'm so jealous I know one day she will but it's hard to wait patiently it's really hard to see other baby's for me my depression has never gone away I just shoved it to the back corner of my brain because I have no time to face it I don't have time for break downs and sadness I have days full of drs appointments and therapy I have stress up to my eye balls and the last thing I have time for is myself I know they say it's healthy but let's face it at this point I'm far from healthy I used to think being skinny was somthing to work for now I notice everyday I loose a little more of myself mind and body . It's like the saying fight, flight or freeze in my case there is no option for flight and fighting came right away I feel like now I'm just frozen in time trying to figure out where to go from here I can't look in to the future because I don't know what that is for us I can't change where I'm at now because this is where we have to stay so I'm stuck unable to fix my daughter unable to fix myself. Putting a brave face on after a while starts to feel like a normal routine which is sad I'm not fake at all I just have never been one to fall apart it's so much harder to pick yourself back up again once you fall apart so I just keep going keep fighting keep pushing forward keep staying positive and so on but lately I have been feeling so beaten and bruised I'm waiting for a miracle that I'm worried will never come that I've already had all my miracles for one lifetime it's just not fair it's so hard to be happy for my friends and their children it kills me because the old me would have been over the moon for each and everyone of them but now it's hard to see them and know harlow will never be like their kids and I know what your thinking "you don't know that" ah but I do wanna know how? Because right now when harlow should be doing somthing she's not and others are that's it yes maybe later she might but right now in the moment she's not and that's that it's somthing I have to accept it's a hard pill to swallow but one way or another it's gotta go down. Sorry for the depressing post but like I've always said I will be truthful as much as I can thank you guys for just being there for me and harlow and bobby in this journey till next time xoxo


  1. Katie, even if you can't play with Harlow in the "typical" ways, read to her, sing to her, talk to her, find the angle and distance from her vision that she seems best able to see and present simple toys to her, help her hold rattles and things like that, play music for her; classical music. These are all small, simple things that make a difference to stimulate her brain. Even if it doesn't show on the outside, it's so good for her and she just might be loving it.

  2. Hello,

    I just wanted to let you know there are many of us out there praying for you and your family. Have you heard of the Veach family, they also have a daughter with lissencephaly and she is now 5 years old and in school. Maybe you can get in contact with them they have an amazing church in LA. Here is Georgia on her 5th birthday going to school.

    God Bless

  3. I wish I could reach through the internet and give you a hug, girl. I wish there was something I could say to give you relief, comfort or hope. Stay strong, one day you will realize that even though your sweet little girl might not give you the same joys as other children, she will open your heart in ways that only someone who has struggled like you have could ever know. Praying for you!


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