So being home hasn't been all I thought it would be. The idea and excitement were ideal but reality has hit hard. When people ask... you must be so happy to be home.. I politely say yes, but really want to say what do u think? I am now juggling three children instead of just one along with all of the other motherly and household duties. I have also realized I never really got angry at the diagnosis. I just got sad and busied myself with projects. Now, I am angry. I didn't ask for this. I didn't want my entire family to have to sacrifice their time and energy for me. And I still struggle with the why me question. I look at Olivia everyday and thank god for how healthy she is, but I also want to take a wrench and throw it at him. I have also seen quite quickly how fake some people can be and have endured nicely the mean comments with a smile. Yet, the biggest issue I have is not that I have to endure this but the fact that sweet Olivia has no say in the matter either.
Oh Melanie, I so wish I could just reach through this computer and give you a hug! Everything you are feeling is totally NORMAL. I remember thinking, when we finally got Bodie home from the hospital "oh my gosh, this is SO MUCH HARDER than I thought it would be! How am I ever going to get any sleep, or give my daughter the time she deserves, or have any semblance of a normal life again???" The guilt over Bodie's condition and over the lack of attention my daughter got as a result was probably the hardest part of everything. In some ways, it was MUCH easier in the hospital because then at least you had nurses to draw up meds and you only had to focus on 1 child at a time! ;-)
ReplyDeleteSince I can't give you a hug, what I can do is tell you that it WILL get easier. Not today or tomorrow, but it will someday soon. You'll still be very jumpy for awhile, probably until after her Glenn. But, you'll find your way to a normal that works for you, where you get some sleep, where you ocassionally trust others to be with Olivia so you can spend time with your other kiddos. And what I can also tell you is that, in my experience, the first few days home from ANY hospital stay is hard. Routines are disrupted, laundry is usually mounting and you haven't gotten into a groove yet. So hang in there - you'll find a groove. And just know that this unsteady, uncomfortable, overwhelmed feeling will come after every hospital stay. But next time you'll be prepared for it - and you'll give yourself some grace and lenience, because you know it won't last forever, that before you know it, you'll be back into routines again.
So, just take a second a breathe as much as you can. HLHS sucks, plain and simple. And you're in the worst part. But it CAN and DOES get better. My little guy, and many others like him, running around, talking and walking and playing with his sister like any other kid, are living proof of it. Olivia will be, too. Our kiddos are living proof that Olivia can make it through. And we, their moms, are living proof that YOU can make it through.
Heart Hugs Mama - and if you ever want to vent, please feel free to email me - amykbennett at gmail.com
Oh...I feel you so much and wish I lived nearby to give you some support. Being home the first time is so scary and stressful. I have 2 other kids too and I still feel like life revolves around Hope. I try to do as much as I can with my boys, but there are times when I know they are not getting as much attention.
ReplyDeleteGet angry...you need to. HLHS does suck and it is not fair that any of our little ones have to go through all that comes with it. It is not fair to them or to our families. But...you will find it getting easier. You will figure out who your friends really are and who you can always count on when you need help.
You are in my thoughts and prayers and I wish I could give you a big hug. I hope you will accept this virtual {{{HUG}}} and know that you are not alone.
When I read your post, I immediately thought about the year I gave up smoking and drinking. I know it's not the same, but it has the same sense of loneliness, impatience, pain, anger, and fear that I sense in your message. I can only pass along what I learned in that process. 1)Take one day at a time, one minute at a time if you need to. 2)Have some people you can call at any hour of the day or night, when you feel the need. 3) Have an older, wiser person to give you good advice 4) Pray without ceasing 5) know that things WILL get better. It worked for me. On Super Bowl Sunday, I will have been sober and alcohol-free since for 24 years.
ReplyDeleteMelanie,Brett, and Olivia, I am outraged if not shocked that anyone could say anything mean to you. I can't imagine myself or anyone else surviving what you have been through, anywhere near enough to compare to how well you have done, doing what you have to do as well as anyone possibly could. You have a right to feel those feelings and let them out. You are lucky to have friends and family to help you, and let them do wherever they can, they would love to help. But all day every day, 24/7 you are the mother who has to bear it all and manage through the day. Anyone can second guess you and question you, but only you and Brett have to bear the complete worry, anger, and sadness. I can imagine that the response to questions about your happiness and how everyone is doing might well be, we're hanging in here in the fear, sadness, chaos, weariness, etc, for the foreseeable future whether spoken aloud or not.
ReplyDeleteI know that Nana is very happy to be holding that baby, Olivia, while you are at home. Your Far Away Cousin