Welcome to my own personal hell...

Wednesday, December 14, 2016

Sorry I haven't been keeping up with this the last week or so it's been really hard dealing with everything from her new epilepsy dignosis to her now being underdeveloped in her growth and already falling behind and then today with the genetics telling us that she's going to die and we can't ever have anymore kids cus we're at such a high risk for it to happen again she's one in 11 million  so this is what it's like to be one... I've been doing everything I can to keep distracted from it all but it's time to face the facts that as hard as I run from the truth I'm never going to get away from it .. I hate every aspect of this it's almost impossible to find joy anymore for me I'm trying to remain positive but I'm running out of patience I love my daughter I truly do but every time I look at her it breaks my heart that she may miss out on so much in life and tho she won't know it.. I will and now finding out I'll never be able to experience what it's like to be a "normal" mom it starts the grieving process all over again everyone keeps saying god only gives you what you can handle .. yea well I'm not doing so hot with that concept .. what it's like to be in my head is like a tornado I got 50 things going on all at once all having to do with something devastating and there's no way of turning it off imagine everyday waking up to the same nightmare and pinching ur self hoping that you will wake up and find out it's all been a dream and that was the learning experience to not take life for granted and lastly walking around in this world seeing parents not give a crap about their kid woman doing drugs while they are pregnant and their kid is perfectly fine going to target and seeing moms with their 5 kids and I can't even have one normal one I hate when people correct me when I say Harlow isn't normal they say " she is normal" oh really then why am I living in my own personal hell where I can't help my daughter I can't fix this no she's not normal she's the best she can be but she's not normal I have a mentally disabled child that I won't know how severe it will be till it happeneds over and over and over again over the years it will be a never ending cycle for me so please I know you are trying to be nice but the sooner everyone understands the better it is on me... I'm not mad at god but I am confused the part that's the hardest for me is that this is my life now I've lost a lot of loved ones in my life I've had to move forward when my dad died I didn't skip a beat I just kept going this however isn't something I can change I can't get used to this because it's forever changing so how can I ever get comfortable with my life when it's constantly being ripped out from under our feet I know this post is pretty heavy but I swore I would be 100% honest on here for other woman going thru somthing similar and so that years from now I can look back on it all.. so it is what it is nothing I can do about it now other then try to move past this part of my life and hopfully the next chapter is better then this one... as for now I'm pretty sure I've finally hit rock bottom...I can't go back to work anytime soon cus the Drs appointments the therapy and the epilepsy and supposably bobby makes to much for us to get financial help soooo what are we supposed to do never be able to buy a house always be worried about money? they asked me in the hospital to rate my pain level on a scale from 1-10 I never got passed a 9 even when I thought it was a 11 I never used it I always figured there has to be something that will hurt worse then this physical pain and tho the day Harlow passes away and I pray to god that it's when she's old and grey and I'll be long gone so I won't know what that feels like I'm pretty sure I'm just about at my 10...

4 comments:

  1. Hi, I've been following your story and I just want to say how brave of a woman I think you are and that you should be proud of yourself your doing the best you can for your child and yourself and there are many mom's out there inspired by your strength and courage, mother hood is not easy with a normal child or a not normal child is has its up's and downs and struggles. I read the genetics said you will never be able to have another baby let alone a normal healthy baby but I do believe you can as other people have beat the odds. I'm very sorry your having to go through this but not knowing you I do believe as a mom you will overcome and get through this.

    ReplyDelete
  2. You are definitely stronger than you know. Your blog helped me put my life in perspective. Our everyday BS is so miniscule, I feel like such an idiot for wining about stupid little things on daily.I want you to know I pray for Harlow,You and Bobby everyday. I'm pulling for you guys. I know things challenge our faith, but I hope all of our prayers pull you through.❤

    ReplyDelete
  3. I've been following your story and wanted to say that you are so brace ... you are shring yourself and your sweet Harlow with the world. That's was any "normal" Momma does.

    My son AJ was born very early and as a result has many complications. It isn't always butterflies and rainbow but we manage. Just as you are. Keep your chin up. You're doing a fantastic job!

    Also... I wanted to let you know that yes you can have more babies, maybe not how you planned but I work in infertility and I can assure you there are specialized tests that screen for these type of genetic mutations.

    Think happy thoughts and know so many people are standing behind you and praying for Harlow.

    ReplyDelete

  4. I've been following your story and wanted to say that you are so brave ... you are sharing yourself and your sweet Harlow with the world. That's was any "normal" Momma does.

    My son AJ was born very early and as a result has many complications. It isn't always butterflies and rainbow but we manage. Just as you are. Keep your chin up. You're doing a fantastic job!

    Also... I wanted to let you know that yes you can have more babies, maybe not how you planned but I work in infertility and I can assure you there are specialized tests that screen for these type of genetic mutations.

    Think happy thoughts and know so many people are standing behind you and praying for Harlow.

    ReplyDelete

CopyRight © | Theme Designed By Hello Manhattan