Tuesday, April 18, 2017

Hey guys

So the last couple of days have been pretty hard. I'm not gunna lie. Between Harlows stomach and her spazzums it's been hard on her which means it's hard on us . Like I've said before comparing is the worst thing I can do but some times it's been hard not to harlow is going to be 6 months on the 22nd and it's extremely cLear that she is behind and not by a little.. I thought things would at least progress slowly but they arnt progressing much at all her stomach isn't helping matters at all . There is so many emotions I get when I really think about things it's like going down this rabbit hole I know I shouldn't but sometimes it's hard not to. When the drs told me she would stop developing mentally at 3 months I basically told them they are wrong but unfortunately they are leaning to right in this case it scares the living shit out of me  that she won't progress I know it's all going to take time and she could surprise us all and it's what I hope and pray for but sometimes I have to be realistic in things because it's life and it could not happen and if that's the case I need to be ready for that too. I wonder often why me I tell my self god gave me her for a reason she picked me for a reason but sometimes I wonder ok if there isn't a god and there isn't a higher power and this is it then how is this fair? How is it we struggle by in life while others have it so easy why did we get a baby with problems while others could careless get their kids are fine it's hard not to think that way sometimes it's human nature to wonder why trying not to beat my self up over it is hard to because no body wants this life I don't care what anyone says no one wants to see their child struggle but there is people out there like us who will do what ever it takes most people seem to have this mentality which is nice to see I just hope I'll be able to adopt and get to experience both sides of being a parent to harlow and to a child who isn't going to have to struggle I know this sounds sorta mean but it is what it is there's no beating around the bush :/ not ever being able to be pregnant again I'm having a really hard time with because again it's something that was taken from me and I had no choice in the matter .. but at the end of every day would I change anything would I abort her would I start over would I put her up for adoption .. no is it because I don't want to feel guilty? No it's because I still have faith in all of this I have my doubts as everyone dose but I have faith that this will all make sense to me one day..


  1. I'm so sorry you are feeling this way, Katie. I think all your thoughts are probably completely normal for what you're going through. You just want your daughter to have everything. You mentioned in your last blog post about the idea of opening up to talking to people. Might I suggest you follow Gwen Hartley (gwennieh) on instagram? Her blog is http://www.thehartleyhooligans.com/p/new-to-my-page-welcome-start-here.html
    Whenever you are ready, of course.
    She has two beautiful girls that have microcephaly. I know that's completely different from what Harlow has, but very inspiring, just like Harlow!
    My husband and I can't have kids, and I don't know why, but I am so drawn to instagram accounts with special needs babies. I'm not sure how I found you, but I fell in love with your story and Harlow many, many months ago. You guys are always in my prayers!

  2. I admire you so much. I am not a mother, I was born with Chiari Malformation of the brain and Perthes Disease so we chose not to take the chance in having children. So I cannot say "I know how you feel", but I can say of course how you feel is valid!! I guarantee nobody who has had a baby with these kinds of health issues have just been like "hurray, this is exactly what I wanted for my life". Nobody would choose this, of course you are grieving what her and your lives could have been. And then to be told that you cannot have another biological child is heartbreaking. I am the same way, when things have gone bad in my life, doctors telling me I'd be in wheelchair by the time I was 30, having 7 hip surgeries, and now looking at brain surgery....my mind only lets me process little bits at a time. It's a protective mechanism some of us have. I live in my "denial" until I'm ready to face it. It may not be the healthiest reaction, but we don't choose how our brains deal with things either. And it sounds like you are somewhat that way as well. I admire you so much for going to counseling, it's so much easier to put up a wall and say that we're fine even when we are screaming for help inside. I don't know how you have gone through all you have without going stark raving mad. And for sharing everything with all of us. That can't be easy either. But I have no doubt there are parents out there who will find strength in knowing they are not alone, learning from your experiences, and in seeing what it is really like. Eventually you will be able to research more about Harlow's condition, and benifit from advice and encouragement from parents who have been where you are. All of that will come in time. Do not bash yourself for feeling sad, angry, or wondering "why me", any normal person would. It in no way means you do not love your daughter! We can all see how much you adore her, and how hard you fight for her.

    There is NO shame either on hoping to adopt. Of course you want a chance at having a child without health issues. Does it mean you love Harlow any less, absolutely not!

    I hope this hospital admit is the start of easier times to come, and that you are able to find your new normal. Who knows how much she could progress once her tummy stuff is figured out. And once things have stabilised and she is a little older I hope you will consider getting help with Harlow... like a nurse who comes a couple times a week. I worked as nurse in an "Adult Daycare"(but we also took children) basically it was patients that had a broad spectrum of issues, and some came while their parents worked all day, some came for a few hours several days a week. But we had PT/OT, music therapy, art therapy, you name it, even recess! It was good for the patients and it was such an asset for the parents. You have to allow yourself breaks. Anyway, I know that's down the road, but there are so many programs out there! Will keep praying for things to ease up for all of you. Have never prayed so hard for someone I have never met. Sending big hugs!!

  3. Just know your not alone. I'm going trough a lot of the same things as you. My one and only daugther is 4 months old and has a very rare genetic disease, and she also has epilepsy. She is also very behind. Doesn't smile. Always fussy and cries a lot. She needs to be held all the time, and we are exhausted. The doctors told us that she will never learn to walk.. It's hard to see all your friends around you with healthy babies, makes you feel so alone. It's depressing and everything feels so meaningless. Thats just the way it is. Everything just feels so unfair.
    But at the end of the day I look at my daugther, finally asleep, and all i can think of isnthat I love her and that I would never wish to be without her. It helps me trough the day thinking that there is a reason for everything. This is now my "mission in life", to give my daugther the best life she can get. And we are the only ones who can to that.
    Always have faith. When you feel alone and so tired that all you wanna to is escape, but you cant because this is life now: know that in a place far, far away there is another family who has a hard time, but that never quits, and that always believe good things will happend. Cause it will. I promise.

    Sorry my english. Big hug from a very very tired mom and dad from Norway!

  4. Hi Katie
    I love your Blog! I have a blog too.
    Mysarahsjourney it's on blogstop as well. We have a mutual friend that sent me your name.
    I wound love to connect sometime as I have an 18 year old special needs daughter. My email isccrodas@yahoo.com if you get a free moment contact me💜You and your daughter are beautiful!

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