Saturday, May 22, 2010

My Feelings are Ugly, but They're Real...

This has been one of those very hard weeks. Nothing crazy has been happening (thankfully) but the weight of the world has been on my shoulders anyway. And it has made me intensely angry.

Like I hate the world angry.

Like I want the world to suffer angry...

Which is not like me.

There are times when I get into a poor me mode, and I have a hard time shaking it. Now seems to be one of those times. The unfairness of it all just sucks.

This week I had the meeting with the service coordinator from early intervention. Talk of having the boys tested to see if they qualify for continued services was brought up, and I signed the paperwork to get things started. In my head I was screaming and raging about how that was the LAST thing I wanted. On the outside, I kept relatively quiet and signed the damn papers.

That same day, we got a note to take to our insurance company to get Ja.son a walker.

And my heart shattered into a thousand pieces...

I hate this. I hate this. I hate this.

I hate it.

---

I need to learn how to stop fighting. I need to learn to accept.


Oh how I am struggling with that.

---

I recently joined a preemie board. It took me a while to even post anything there. They all had preemies, but many of them seemed like everything was just so...normal.

We don't fit in there. Maybe I don't fit in there? I am trying to, but....

Maybe I am just too hateful and my feelings are too ugly for me to be a part of groups like that? Because damn if I haven't asked myself why they got to be so lucky.

Why did my boys have to be the ones with lingering issues?

---

I saw this on another preemie blog. I've seen this one before on Caryanne's blog also, only hers was about parenting a child with cerebral palsy instead of premature. Both times I cried big, ugly boo hoo tears.

Did you ever wonder how the mothers of premature babies are chosen?


Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation.

As he observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity. "

Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."

The angel gasps, "Selfishness?! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air.

God smiles. "A mirror will suffice."
---

I know these feelings will pass. They always do.

Soon, I'll feel better...stronger.


But not now. For now the sadness is heavy in my heart.


15 comments:

Strange Girl said...

It's a good thing that your sons have you in their lives. I can tell you're fighting for them. I'm sorry EI is being so frustrating. (ICLW 56)

Cathy said...

I hear you on this. Really, I do. EI is up my ass too, and I keep putting it off. I can't be a part of support groups because I wind up feeling like an awful person on top of everything else.

Sometimes it does help to think we were given these situations because we're "lucky" and "strong" ... mostly I don't believe it though.

Hoping for brighter days ahead ...

caryanne said...

Oh. I totally get this post. Especially the part about preemies that seem so normal. I feel the same way "why me?", "why Ben?". It just sucks so much.

We went to the beach today. It was too windy (the sand was pelting us) so we left for the playground. Daniel was having so much fun. Climbing up the equipment and then sliding down the slide. Ben mostly sat and watched all the other kids play. My heart broke (for the millionth) in that moment. I had to turn away so others wouldn't see the tears. It's so hard some days. So freakin' hard. I just hate it. I hate it. I hate preemie-stuff (mine were 30-weekers), I hate CP, I hate walkers. I hate that my son needs HELP to play on a playground.

You are not alone in this. Remember that: You are not alone.

Big hugs coming at you via cyberspace.
Cary

Nearlydawn said...

That was a beautiful story, even if it is harsh in it's way. Maybe it is also why some of us loose our babies early... so that we will go on to help and support others because of our understanding and strength. Maybe not, but it doesn't hurt to have some sorta reason WHY?!?!?!

...I wrote more, but I deleted it... sufficed to say I'm not needing to take over your comments to pour the well of saddness out of my own heart.

I'm sorry it is so hard to watch your boys struggle. I really am. It also makes me realize just how freakin' lucky I am to have a child with no issues that I know of. I am damn lucky, and I'll try to remeber it more often on your behalf.

Oh... email me sometime and I'll tell you how YOUR story helped ME to spread some happiness to another family.

Trish said...

Oh honey. You Do belong. and you absolutely can share the ugly parts.
Robbie still has a ton of lingering issues and sometimes I am still so, so, so angry about it. And sad.
We spent this weekend with friends pretty close to Robbie's age (1 a month younger than his actual age, twins who are about 3months younger than his adjusted age.)
All I saw all weekend were the things they were doing that he didn't.
It sucks. It's not fair.
I'm sorry. :(

Jules said...

I feel like I don't belong on preemie forums for the reverse reason. I feel guilty but at the same time so blessed that my 30 weekers are what I believe (from your post) you consider normal.

Stay strong. You are not alone. Take Care.

Half of a Duo, Raising a Duo said...

My sons were born 4 weeks early and got zero NICU time yet they have a plethora of serious health issues that linger, including muscle tone issues, asthma, severe allergies and pulmonary problems.

I so understand. The winters are the worst and taking them out is just not do-able.

Hugs to you and you do belong. There are many of us out there who can relate.

EWebey said...

That is beautiful. I got chills.
Good luck on everything you have in the coming days/weeks/months!
ICLW:156

Aunt Becky said...

Whatever you do, don't trivialize them. Please. It's easy to do it. Hell, I do it too, and just don't. You have problems. It's freaking HARD dealing with what you do and sometimes it's okay to let yourself feel BAD about it.

It's not fair. That doesn't make you less of a mother to admit it. It just makes you human. xoxo

Anonymous said...

I know the pain involved in fighting rather than accepting. I do this too (although not a preemie issue), and on most days my refusal to accept is good for all of us. But on the days when I come face to face with the fact that we still have issues, it is like confronting the issue over and over again. But, here is the silver lining I remind myself of -- if you can still fight, rather than accept, that means things could be so very much worse for your child. The fact that we can still fight and work to solve issues and not accept means something. It means we have hope. And not everyone gets to have that.

Heather said...

My son was born at 27 weeks, addicted to cocaine--he now has CP and a feeding tube. Listen: those feelings you have are normal. They will pass, and you will become the best advocate for your sons.

ICLW#5

Hopeful Mother said...

I could write a novel here, but instead I'll just say, I hear you loud and clear.

It is REALLY hard most days. I hate to be dealing with EI, insurance, therapy, walkers, special education etc. and just wish my Al.ex could be "just a boy" and not have to fight so &$# hard for everything.

Like anonymous says, it is often a tightrope walk between fighting it and acceptance. And I go back and forth on that rope all the time, never really getting to either side.

HUGS to you.

Jem said...

I haven't walked in your shoes, but I do know about having ugly feelings. I'm so glad you have this blog and the IF world to help you vent, which is the first step towards acceptance. Not sure acceptance is the right word, either. Peace. Just being with whatever is happening. How does that fit?

BTW, Happy ICLW!

Jem

Britt said...

Thank you so much for sharing your heart! Your blog is beautiful!

Mijke said...

We are one of those lucky ones, the ones where everything turned out right in the end. It took two long years for me to finally stop being scared of how our 8 weeks premature twins would develop, whether they would have lingering health-issues, whether they would be able to walk, talk, play and grow like 'normal' children.

And then came our third preemie. He was only 4 weeks premature, needed only a one week hospital stay and is doing perfectly fine right now. Still, I worry. It might not take 2 whole years this time, but the preemie-fear thing? It doesn't let go of any parent easily...

But yes. We ARE one of those lucky ones. And I am thankful for that every single day! I wish you had been just as lucky, I truly do. But I also know that you wouldn't trade your kids with mine, ever. Some people might, people who are not as strong, not as loving. Other people might, but not you.

A good friend of mine has a (34 week preemie) son with CP and I have watched her struggle with the same things you are struggling with right now. Ordering the bigger walker, the new trike, and last year after a long period of tears a wheelchair. Filing the paperwork for extra health- and school services. I have watched her eyes tear up when talking about all the normal things kids do that he can't. Heard her talk about the normal things her OTHER two children are missing out on because of his CP (the things the outside world often forget about, the things I sometimes don't realise when suggesting things to do together). Felt her sadness for her son.

But I have also witnessed her strength. Felt her warmth. Seen her love for all three of her sons. And I am watching those three children grow each day. The oldest two are the most wonderful little PEOPLE I know, and the youngest is literally the happiest baby on the block. Including mine.

My friend totally ROCKS... And so do you!

There most definately must be a reason why the two of you were chosen to have the children you have, with the problems they face. Every child needs parents that love it unconditionally, parents that fight for their wellbeing every single day, and these children chose you. And if ever a choice was the right one, this is it!

It still sucks though that there had to be a reason. That they had to make that choice in the first place...

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