I am very worried about Sh.awn. There is just something not right with him and it feels like the time bomb has started its countdown. It would be fantastic if we never have to have another operation on his head. I would jump up and down and scream to the universe that finally something is right. Except in my heart I know that it isn't going to happen that way. I know it is only a matter of a few days, maybe weeks at the most, before we are back at the hospital.
And I can't get anyone else to see it. The doctors don't get it. They just want to take this wait and see approach. Until when? Until it is an emergency? Until there is irreversible damage? It feels like Is.aac just goes along with the doctors. He wants to believe them. He wants to trust them. And I do, too, but I don't trust them. I don't believe they are infallible. I don't believe that they never make mistakes. I don't believe that they know everything, so I am left fighting alone. Because I see it. I wish I didn't. I wish I could just go on blind faith that his head will be okay. Only that is not what I see damn it.
I am tired of fighting all the fucking time. Tired of being the one who has to always push. Tired of hospitals. Tired of seeing him sick. Tired of seeing him stuck over and over and having to hold him while he screams with that wild look in his eyes. Tired of knowing that he expects me to protect him but I betray him and help the enemy. Tired of watching my son struggle to do things that most do so easily. Tired of worrying that this latest setback will cause even more damage to my beautiful little boy. Tired of everything.
Why can't something be easy?
On days like these, the anger takes over my entire being. I fight with Is.aac. The boys frustrate me. I just want to hit and scream and hurt everyone I can. Until...I don't anymore.
Until...I'm left with feeling sorry for myself. I hate that feeling even more. I hate writing about it, and I hate thinking about it. But here it sits, my intimate partner for the night. I've finished my torture rounds of HOM blogs. I've read about healthy quints, quads, triplets, and even twins--all healthy with absolutely zero problems. I scoured their archives looking for brain bleeds and not a single one had to endure this torture. All of course lasted well past my gestation. There is even a woman pregnant with septuplets who is around 22 weeks and doing well even with an incompetent cervix and loss of twins at 18 weeks. All the joy, all the "normalcy" makes me feel even more sorry for myself--like I am such a failure.
Tonight I was holding the boys. Sh.awn was fussy (another thing that makes me worry) and Ja.son was trying to climb into my lap. Is.aac looked over and said something about me wanting to bring more babies into this family. My heart shattered.
If things don't go well this next time around, it will again be my responsibility.
It would break me if my body fails another time. It would break me if this pregnancy ends in PPROM and prematurity. It would break me to have to watch another of my babies struggle each and every day.
A friend of mine sent me a text about how amazed she was at my strength. I just continue to face each obstacle in front of me and always have such stoic grace and strength she said. I wanted to laugh.
This isn't strength.
If she only knew about these feelings. This is ugly. This is shameful.
This is terror at its truest form.
And I hate it.
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19 comments:
Hi neighbor, glad to have some company in this hell.
It's awful. It truly is. Watching everyone else with their normal kids, or even "better off" kids. Hell, I'm jealous of you sometimes ... for all the shit, your kids EAT. They aren't on a form of life support. And you ... you had the courage to move forward with life. We don't.
Hang in there. Hydro is easier when they're old enough to tell us what hurts. Everything is easier then.
There is nothing shameful about how you feel.
Oh my beautiful Stacie.
The week you have just had? Abso-fucken-lutely terrible. I have been thinking of you and your boys so so so much. Hang in there my sweet .... I am so glad you wrote what you just did. There are a lot of us living in your computer who wish you well, send you love, and want to do anything to support you.
I can't imagine what it must feel like for you. I just want to scream at someone, on your behalf. I really really hope and pray that your Shaw.nie Bon gets better. I wish I could do more than just "wish" .... but honestly, I really am sending you my love and light.
Maybe the last few days have triggered some PTSD? I only say that because I get triggered all the damn time ... about EVERYTHING, soz for the assvice.
Loving you from Downunder, StayLow.
XOXOXOXXOXOXOXOOXOXO
Your friend is right, you are very strong. It's not shameful to have fears, to have worries, to have moments where it is all overwhelming, it's human. I'm so sorry that things are so difficult right now. I hope Shawn continues to improve.
There is absolutely nothing shameful about how you feel. Lots of {{{hugs}}} and prayers.
You are Shawn's mother so it is your responsibility to know him better than everyone else so of course you would see things that others miss. It just sucks that you have to constantly fight to get him the care you think he needs. That's not fair.
You are strong. You are having a moment of feeling vulnerable, that doesn't mean you are not a strong person.
Please don't beat yourself up for things beyond your control.
This too shall pass.
Stay strong!
Carrie
I think you are strong. You are strong to fight the doctors, fight for your boys, push push push. Every day you don't crumple into a heap and cry (and even on the days you do, because after you finish, you get up and move on) you were strong.
Parenting kids with special needs is HARD. HARD HARD HARD. You're allowed to think ugly thoughts. You're allowed to worry and feel guilty. If you didn't feel this way, I'd think you were self-medicating.
HUGE hugs to you!
--Trish
I can't begin to understand what you have gone through with the boys and their surgeries, particularly, Shawn, but I do know one thing--you never know what the eventual outcome of a pregnancy will be. I know several triplet moms who have lost one baby or more--one of my friends in the hospital watched her two sons die from NEC after she gave birth at 27 weeks. And there's many other stories on my triplet parent message boards. Some turn out very well, and some turn out horribly. And sometimes even mothers who carry one baby to term have to deal with horrible things as well. The most any of us can do when we find out that we are experiencing premature labor is go on bed rest, follow the doc's instructions, and wait. If someone doesn't follow the doctor's instructions, and doesn't stay on bed rest, or does too much, then that mother has put her babies at risk. But you never did that--you did the best that you could do, and with this new pregnancy you will again do that best that you can do. Babies are not held in through personal efforts of will, or yours would have been born at 40 weeks. You can't be responsible for incompetent cervix, or water that breaks early.
And yes, you are handling this with strength. Why? Because you acknowledge your feelings, and it takes strength to do that. Enormous strength. Just as it takes strength to constantly affirm to people that something isn't right, that something else is very wrong. It's your gut, and you are strong enough to stand up for your gut.
I'm a firm believer at times that they need to make some kind of chew toy for adults--I know what you mean. Sometimes I just need something to bite down on and rip apart.
What a raw and emotional post.
I am so glad that you are able to express your feelings. Sometimes you need to say the words out loud to work them out.
I'm sorry that you are scared. I'm sorry that Isaac said what he said. I'm sure that he is scared too and that he's afraid of what might come with this new pregnancy....but those things he says can't be taken back and for that I'm truly sorry. It's a hard thought process to erase.
You are an amazing team. Together you have been able to diagnose and help treat a life threatening illness time and time again.
You know the cues and you jump in to action.
I wish there was some way for you to relax in the knowledge of this power that you hold as Shawn's mother. Trust yourself more.
You are both amazing parents and your strength shows in every challange you are faced with.
Why you've been chosen to be the strong one....I don't know. But I have no doubt in my mind that when it comes to your children you won't always stay strong. no matter what comes your way.
Maybe that's why you were chosen to be their mom.
Big Hug Stacie.
I'm sorry. :(
From my perspective, you are being strong and incredible. Ever since the boys were born (even before), you've endured things that nobody should ever have to endure. Your strength has been tested, and you're still here... you're still Stacie.
It makes perfect sense that you're angry. You have every right to be. By allowing yourself that anger, you let it out and clear space in your mind/life for doing things like loving your boys and your husband and your baby to be.
I want for this all to go away, for your path to become smoother, for you to be able to just enjoy.
I'm thinking about you.
I'm so sorry you are going through this, but as one special needs mom to another all I can say is you are absolutely right to fight the doctors and everyone else when you KNOW something is wrong with your baby. They didn't believe me when I told them Skyler couldn't see either. We know our kids better than anyone. You are doing an amazing job, even though it's an almost impossible (and horribly shitty) one to have to do. Hang in there mama.
Stacie-
I couldn't even begin to imagine all that you are going through. Know that I am thinking about you and when you can send me an email...
Hugs,
Crystal
luvmy2grlz @comcast.net
You are not a failure. You are fighting to protect yourself, your boys, and your family, that to me is heroic.
My husband is the same way when it comes to doctors, and I know looking later when I can think more objectively that he does this to help me. At the time I get pissed that he doesn't see it my way, but realize later that he is trying to be the strong one, because if I saw him break down than it would make it a million times worse. Isaac may be doing the same.
Remember, every pregnancy and child is different, do not rush to conclusions that things will automatically turn bad (I know easier said than done).
I will gladly stand with you supporting you along the way as you fight the doctors to believe you for as long as it takes.
Your post and KJ's comment both brought tears to my eyes....
We as the mom's are the strong ones. We must be and we don't know how not to be!!!!!!
Oh sweetie, I'm so sorry. I'm angry for you.
The previous commenters have said it already, but I'll say it again:
you are, no doubt, STRONG. I envy your strength and resolve. I know it doesn't feel like it sometimes, but I am so impressed by how you handle the stress. (I wish I could handle things HALF as well as you do.)
And I can TOTALLY understand why you are angry and tired of fighting. Why does it have to be so hard?
Know that I am praying for you and your family.
There is NOTHING shameful about how you feel about your son! You want nothing but what's best for him, it's understandable for you to be angry. I'm angry, as well. My heart is sick for all you have to go through, for all Sh.awn has to go through. Your friend and everyone else who has commented, is right. You are strong! You're fighting and you don't let ANYTHING or ANYONE (asshole)stop you. I admire your strength and your courage. Even though you are scared.
I think Eden might be right about PTSD. I had it after my mom passed. Everything, from Husband getting home late, to Zilla or Nae being out of my sight for 5 minutes, made me freak out! It's ok to freak out.
Sending you so much love and peace, hon!
*HUGS*
Trust your instincts.
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