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Happy Birthday my King......

So it's been a while since I've posted, I guess that's a good thing. I've been in a better place and I'm liking it there.

To my third baby, who is well on his way to no longer being a baby. Today you are an entire year old. It's hard to believe that on this day last year you looked like this:

And today you look just like this:
Yeah, I totally put my babies to work as soon as they can walk......hello?

Rollie Pollie, you are a light in all of our lives, but most especially in mine. When I found out I was pregnant with you I was beyond elated. I remember the day, I was in the ER where I kind of still worked and everyone was so shocked at my excitement. I mean, my daughter had this terrible, horrible disorder and took all of my time, so how could I be happy about another baby? It's simple really.......I knew God had planned it just.like.this. Make no mistake, you are no replacement baby and you will never feel like one, I promise you that. You are the sunshine after the storm. You are the restoration of my faith in good and humanity in a crazy, sad world. You have helped in ways you will never understand to heal my mother's heart. You are a gift from God, like all of my children, but you are a little more special in your own way. You came at the right place, at the right time. You are perfect my sweet son and I love you so much.

This last year has been amazing and I have absolutely loved watching you grow. I had forgotten how magical it is to have a child that can sit up, crawl, babble, smile, laugh, WALK! You are the sweetest most affectionate child yet. You love to breastfeed (still!) and love to give kisses (open mouth of course!). You are very social and always meet everyone with a smile. You are incredibly adventurous and I am always on my toes trying to guess your next move. You are a master immitator; always mimmicking my every move. You are stubborn and full of emotions, like somebody else I know (no names!)

Happy Birthday my sweet little monkey, I cannot wait to watch you grow up into the intelligent, handsome, caring and compassionate man I will raise you to be. I love you more than life............Love, Mama

wishin and hopin and prayin

Wow. What a month. I'm so totally zapped I can hardly concentrate. My mind is all over the map and my eyes are permanently heavy. My dad is all fixed, no cancer and is finally HOME. All by hisself! OK, OK, I will admit he was a perfectly perfect house guest (third child!) and I kind of liked having him around to chat with during the day (I get so very lonely these days) but it's nice to have my house back. My silence back, no matter how short lived it is.

Last week my grandfather and great aunt both passed away from different cancers 24 hours apart. Geez. I'm starting to wonder if I have the freakin' cancer now. So two funerals, no weddings. Oh and toss in a major head cold to spread around the fam (thanks dirty pre-k kids! I'm talkin' to you disease spreaders!!) I'm done-zo! I am finally catching up on some sleep (well if you consider breastfeeding a teething infant a gagillion times a night sleeping, like I do that is) and starting to feel "normal" again.

Can I just say I am so stinking excited about this election?? I mean, really excited and ignited. I never thought I would push the democratic agenda, but I totally am. Totally. I love OBAMA! There I said it! I'm a "gut instinct" kind of gal and really it never steers me wrong (I sometimes just like to ignore it) and everything in me vibrates with ICK ICK ICK on McCain/Palin. I am a WOMAN and Palin makes me want to vomit. Of course she is the exact opposite kind of mother I am so that bugs me.........I mean, really? You just gave birth to a special needs kid like 5 seconds ago and your running for vice president of the FREE WORLD? IJustDon'tFreakinGetThat. At all. Been there, done that, bought the T-shirt and I couldn't even work at my local ER anymore with Isabella. I'll say that Lissencephaly (severe Liss at that) and Down Syndrome are not even remotely comparable, but still. Special NEEDS. So that gets me.

Her abortion stance? Fuhgeddaboutit. Her referenceing herself as a "pitbull"..................in a word: gross.

But enough about her. Obama. Oh, Obama. You are young, you are bright, you look good too. Your family is precious, your politics are even better and oh, you don't agree with Iraq. SOLD!

So am I totally left wing nut? Nope. I'm just likin' what I'm hearing from that side and I'm so over Bush and everything he's done. I'm all about change, change, change. Especially in my own life.

I've just got this stirring inside me lately. I need to move, grow, change. Something. It's like my family is on the edge of this crappy, hellish cliff and we're about to fall off. (But in a really good way, not in a splat! dead way.) We totally have parachutes and grandure awaiting us at the bottom. I can just feel it.

Isabella just turned our world upside down and rocked it out and we are still figuring out how to turn it right side up, but better. I want to be a better mother, a better wife, a better friend.......just better period. I love that sweet girl, I MISS that sweet girl.........I wish I could dream of that sweet girl. I keep reading about all the these dead baby mama's out there and how they dream of their little babies/children and I can't help but feel jealous. Why doesn't Isabella come to me? She comes to Turkey I think, but no mama. Maybe my heart isn't ready for it like my mind is. Figures.

Turkey is offically a Pre-K kid and loves, loves, loves it. I couldn't be happier.........and let me tell you, two and half hours with one sweet baby is bliss squared. Wow, a whole new world.

The other night Turkey was laying in my bed staring at the huge picture we have of Isabella above our bed when he suddenly started crying. I asked him what was wrong and got this: "I really miss sister. I wish she would come back down. (long pause) It just makes me so sad."


Do you hear that? It's the sound of my heart breaking.

What am I supposed to do with this? Watching my child suffer through such tough emotions and he's a child! It's just not fair. I just explained to him how positively happy Isabella is now with Jesus and how healthy and free she is. It seems to make him feel better, but who really knows. This conversation will be on-going for years to come I am sure. We miss our girl.

Also, please pray for the Nielson's (Nie Nie and her husband Christain specifically) They are an amazing couple and they need all the prayers (and moolah!) they can get. Thanks.

good news and bad news

So I'll give ya the good news first. My dad is cancer free, yesiree he is! The surgery went great, he is staying with me for two weeks (ohmyholyhellyesheis!) and it's been fine so far. He's a good patient here with me, much better than just after the surgery. Thank you for any and all good thoughts and wishes, they were answered, he is the first colon cancer survivor in his family. WOW.

The bad news: A darling, wonderful, amazing family has had tragedy strike. They are the Nielson family and they live in Arizona. The Nie Nie Dialogues, you know who I'm talking about. Well, she and her husband Christian were in an awful plane crash last week and both are in critical condition with burns all over thier bodies. They have 4 children under 6. Please click that sweet little donate button over there and help with the recovery efforts. Read Nie's blog, she is the most amazing woman, mother and wife. We should all aspire to be just like her in every way. Prayers and sweet thoughts are needed for them, God is listening. Their recovery is expected to take millions, yes millions, so please clickety click. Thank you.

(I totally would have put a little link do dad in there for to click on her blog, but I'm blogtarded so you'll just have to figure it out yourself.) So there.

I don't have much time these days so posting will be sparse, but I have thoughts and emotions running wild. The Nielson's have been on my mind and in my heart, I think about them most of the day right now. Really,their story is so touching, I hope it touches your life as well.

Off to be a nurse and mommy and wife. I'm tired. Very tired.

Emotional rollercoaster, here I come!

My dad had his surgery yesterday and he came out fine, thank goodness. His doctor really took his case seriously and bumped her other surgeries to get him quickly due to our family history. So, the news. Good and bad of course. (Am I ever going to just get GOOD?!?)

Both tumors were removed successfully. She (the surgeon) removed an entire FOOT (holy bajoly!) of his colon and got it all. No colostomy, no complications. Big sigh of relief from all. Now for the bad news. If you recall, she removed a portion of his tumors for a biopsy. Those results came in the day before his surgery and she said it was concerning news. The type of cancer he has is adenocarcinoma, which is most commonly associated with the colon. So the good news is that she got all of the tumors out; gone baby gone. The bad news is that the biopsy, aside from showing the type of cancer he has, it also showed if it's a well differentiated cancer or a poorly differentiated cancer...i.e. slow/friendly cancer or mean/aggressive cancer. Cancer has personality ya'll.

Well, Daddy dearest has one of each. One tumor is kind of stupid and friendly and the other tumor is smart and quick to spread. So, that translates to another week of fretting and nail biting while we await the results of the ever important pathology report of the lymph nodes. I know, a whole stinkin' week.

I will say, that the doctors eyes revealed quite a lot about what she is thinking if the cancer has indeed spread to the ol' nodes. Not good. So we will just have to see. In the meantime she wants my brother and I to get genetic counseling she what were up for in our future. Boy, I just can't wait to see what kind of cancer I'm promised so I can freat and worry and stress over things that have not happened yet. Right. So I may forgo the genetic testing. I haven't decided.

I have already had my first colonoscopy and it was about as much fun as having nails driven through your skull. Although I don't have first hand knowledge of the latter. I am already, in fact, due for my second colonoscopy. Can't wait.

I think I'm just ready to be done with death for a while. Are there some sort of "death quotas" out there?

Of course, most of these emotions take me right back to Isabella's death. It's not a place I like to visit and re-visit very often. If I am totally honest I can say that I have felt anger at those around me who are dying/will die soon. I get angry that they will see her before me. Isn't that totaly craziness? I certainly don't want to die right now, I still have two beautiful boys to raise and love. I just don't want anyone else getting their grubby paws on my daughter before me! She's mine, all mine! Don't even get me started on husband dying before me.............oh my goodness that really lights my fire. I'm a freak.....I know.

So another round of The Waiting Game for me. I will keep you posted. More good thoughts/prayers/vibes, whatever ya got. Please and Thank You!

sweet boys

My babies.........aren't they precious?

Cancer here, cancer there, cancer, cancer everywhere!

When it rains it really does poor doesn't it?

So today I took my Dad to have a colonoscopy...........and of course it just so happens that colon cancer totally runs in my dad's side of the family. I'm pretty sure just about everyone has died of it.............literally, everyone. My dad is the only one left, (well except for my brother and myself of course.)

I'm in my twenties and already I have had my first "screen". Let me tell you, colonoscopies are not fun.

Funny maybe........just not fun.

So, my dad. I waited (with my two kids whining the whole time, gotta love it) and waited and really just didn't expect any kind of bad news. I mean, sure, it had been five years since he'd had his last colonoscopy and yeah, he's overweight, and yeah he never gets his heart rate above...oh, a resting heart rate and it runs in his family. But, still, I live in denial land from time to time and I thought I'd talk to the surgeon and she'd say "everything looks fine!"

Notsomuch.

I go back there and suddenly my dad looks so fragile and a little scared. I ask how he's feeling and he mumbles something saracastic, like "just great". Then the doctor comes in..........the surgeon and she's a chick so I totally dig that. I love me some chick doctors, they are way better than dude doctors bytheway. She first says, "Well I have some bad news." I think something along the lines of "Of course you do dahling, that's the only kind of news I get." She goes on, "I found a good size MASS in your dad's rectum (oh goody!) and another smaller MASS in his actual colon. They look bad.............they look like, cancer." OK, so I have to admit, when she said the "C" word I almost lost it. Totally almost started bawling my big baby eyes out. I'm not really a crier, espcially in front of others, but this was too much. Again.

Quick like lightening I remember my dad and how my bawling like a freak wouldn't really give him that "comfort" feeling and I also remember my uber sensitive four year old who has already experienced enough emotional devastation for a frackin' lifetime, so I internally slapped myself silly and sucked it up. I got my big girl panties all pulled up! Then I listened to this rockin chick doctor and she made me feel better. A little bit anyways. Listen, I totally know that doctors lie just a little to make patients and their families feel better. I get that.....and I'm OK with it for now.

So, the course of action. First things first, we gotta get my Daddy-O's blood pressure down (don'tevengetmestartedonthatshit), so I scheduled him with his primary tomorrow morning PRONTO! He's gonna hate me when this is all said and done. Next week he'll have a PET scan and then we'll (yes WE) meet with rockin chick surgeon at the end of the week and discuss. He will have surgery to remove those nasty MASSES and we'll go from there. Best case scenario, the cancer is contained in those masses. Worse case scenario is that it's in his lymph nodes. So we wait.............again.

Oh and p.s............my dad lives all alone, no family besides ME (cancer, remember?) and had nobody. Sad, I know. So I will be taking care of him (which I'm totally OK with that!) I just wish it didn't involve two small children.

I see lots of chanting and lamaze type breathing in my future. Lots.

If you pray, please pray for my dad. He could use a prayer or two.

Thanks.

Bitter? Party for one........

OK, so I've been a smidge bitter lately. Just a smidge. I do not really know why, where it came from and when it's leaving. I really no longer question my myriad of emotions anymore, I just go with it and wait. I know it will pass, I just sit and feel it and wait.

I guess I am just genuinely surprised at the lack of compassion husband and I have received after losing Isabella. I know some folks felt like we had made the decision to not do aggressive life saving procedures for her months before her actual passing and so we must have been totally prepared and at "peace" with it. However we were not totally prepared...........at all. I mean, yes, we were prepared in the sense that we knew she would not live this fantastically long life, at the most, with aggressive medicine, ten years is what we were told. In all honesty, the doctor, the expert felt more like two to three years. We got a little over a year. It was so sudden, her turn for the worse. She had been doing well, eating well, sleeping well, not seizing well and I just didn't see it coming. Much like her diagnosis. Didn't see that coming either.

I also have to admit I put on a pretty brave, strong face. Perhaps it's not just a "face", I do consider myself to be pretty brave and very strong.........but that doesn't mean watching my child die didn't destroy me.......or at least come thisclose to destroying me. It wasn't just hard or difficult, it was infinitely heart breaking. Something I wouldn't wish on my worst enemy. Something I will carry with me for the rest of my life and sometimes I think that just sucks.

So I've got a bad case of the bitters. The "nobodyunderstandssowhydon'tIjusteatworms" bitters. I know I'm not alone in this, I know it very well. I have received emails from women all over the world with their stories of heartbreak and untimely loss. In some ways I find it horribly comforting and at the same time I find it horribly awful. It's a real catch-22. I'm glad to have the commraderie, yet devastated that so many of us are "in the club". But we are and we always will be. There are no do overs when it comes to life and death.

So what do I do with my resentment and bitterness? Surely I won't cling to it. I will pray like I always to my Father in Heaven that he will help me through. That I will know his peace and love and that I will make it through this. I cannot live my life angry and bitter. I will not live my life like that.

Coming up!! I will be posting about my total lack of weight loss and I am hoping that by posting just how fat I am, I can possibly shame myself into losing weight? Maybe? Hopefully? Please internet?

Goodnight!

More sadness coming my way

So, my grandfather is dying......I like to just get right to the point you know. He's been sick for a while with recurrent prostate cancer. We found out about 6 months before Isabella passed away and he's been fighting it ever since. Up until last week he's been doing pretty good considering he is in his seventies and the cancer is everywhere in his body, eating him alive.

That is until last week.

My mom called me and said they had decided it was time for Hospice. Of course they wanted the Hospice nurse we had and I agreed that would be best. I loved Isabella's hospice nurse, or rather I love her. She is an amazing woman and became my friend over the months she spent stopping by once a week to check on us.

The trouble with all of this is what it's doing to me mentally. The flood of emotions and memories is almost too much to take. It's left me remembering all the bad days and the last week of her short life. I hate that week and I hate thinking about it even more. I still wake up most days wishing it was all a bad dream and that I have three healthy, beautiful children. Will I ever give that up? Will I ever find total acceptance?

Ironically enough I feel as though I do not know what to say to my mother who is losing a father or my grandmother who is about to lose her life companion. I have harbored such resentment against those who did not have the perfect words of comfort for me and I here I am, stumbling awkwardly. A taste of my own medicine I suppose. Death is uncomfortable to be sure and I find myself with this huge chip on my shoulder constantly thinking "well, their loss is not like my loss.....they aren't burying a CHILD". Or even "OK, he's old, he lived a long, happy life, Isabella certainly didn't get that!" Man, I totally cringed even typing that. It's awful.........but painfully true.

My mom did really piss me off the other night with some of dramatics. We were talking about her decision to place her dad in Hospice and how difficult it was for her and she literally said: "You just don't understand what it feels like to put SOMEONE YOU LOVE IN HOSPICE, IT'S LIKE YOU ARE GIVING UP ON THEM AND ACCEPTING THEIR DEATH." Ex-fucking-cuse me? I don't understand what it's like???? I literally could not even form words with my mouth I was so shocked. I mean, yeah, she's under some stress and she's facing her dad's death and all that so I should probably cut her some slack. But seriously? I think I fucking DO understand, like five million times MORE than she understands. Are we really going to compare the death of a dying old man to my daugther who never even got a real shot at life? Really? Are we sure about this?!

I in fact, absolutely know what it's like to put "someone you love" in Hospice. I can remember signing the DNR papers on my daughter, my child, my breath like it was yesterday. I can remember the people, the emotions, the fucking smells of that day. I can remember how Isabella was sweetly napping in her crib and I could hear her soft breathing on the monitor as I literally signed her life away. Just like that. Oh, but I don't understand. Please.

The problem, is that nobody understand ME and what I've been through. None of my friends, none of my family. Nada. I've searched high and low for a support group, email group, and have come up empty handed each time. There is nothing more isolating than losing a child, nothing more painful. I will say it loud and proud: If you haven't lost a child, you just don't know.

And hopefully, if you are lucky, you never will.

Wordle.............Word.

I think this is so neat! You type in your url and it puts together this little "wordle" which is just a mass of all the words picked from your website. Pretty neat-o.

Here is mine : (Click to make bigger)

I'm clearly bored today...

How to resent all of your family and friends in one easy lesson

OK, first of all you need to get pregnant. Totally basic stuff here, usually anyways.

Second, you need to have what everyone (including you!) thinks is a normal, healthy pregnancy.

Third, you need to give birth to a "healthy" baby.

Fourth, you need to find out in the coming days/weeks/months/years that something is terribly wrong with your "healthy" baby and your world needs to crumble around you. (The hard part)

At this point everyone around you will clamor to help and comfort you in any way they can. You will be amazed at everyone's compassion and generosity. You will experience a surge of love for all of your family members and friends like you have never experienced. This will go on for sometime, you will think you have been blessed by the gods with wonderfully supportive people who will never turn their backs on you. You are wrong.

Now your not-so-healthy baby has to die. (The hardest part.)

Where is all that love? The compassion? The generosity? The clamoring? Wh-wh-wh-wha?

Gone. Poof. Just like that.

Nobody wants to touch a dead child! Nobody wants to call you and see how you are doing. Nobody wants to even ASK how you are doing. Nobody dares to mention your dead child's name, because "what if you CRY for pete's sake??" Then what??

You grieve and you grieve alone. Your family? Your friends? They move on. It's so easy for them, too easy in fact. It's better to just not think about it. I mean, after all SHE is better off now right? She had no real life..........death was good for her. We can all rest easy now. They ASSume you feel the same way. They are wrong.

There you go, I told you it was easy-peasy!!

Did I think it wouldn't come back or what?

So of course, I've been on an upswing (hence the lack of blogging) and there is only one way to go when you are up right? Doooown. Not that I've been in the pit of hell again, thank goodness. I've just been feeling morose lately.

If fact, yesterday I had the boys in a my new sparkley double jogging stroller running (trotting) and I just started sobbing. While running (trotting). I just miss my girl so much. Every minute.

Watching Rollie Pollie grow and flourish has done amazing things for my heart and soul. Just last week he was standing at some toy and he turned his head to smile at me and my heart stopped. I just saw a glimpse of Isabella......of how she would have looked playing and smiling at me. I've tried so many times to imagine what she would have been like and I guess I lack the skills, because I cannot even fathom a life for her that is not full of illness, seizures and total non-development. When I think of her, I think of her the way she really was, not the way I hoped she be........

On a better note, I have in fact been working out again (finally!) and I love it! I am finally starting to get myself back after all these hard years and it feels fantastic. I'm re-discovering me............not the mama, not the wife, just me. Where have I been? Having babies, losing a baby, having another baby, cleaning, cooking, wiping butts, taking names. Oy vey. It's good to come back to myself. Of course I'm still a mama, a wife and a butt-wiper, but I need to be ME as well and I sometimes (ok all of the time) forget that.

I have so much love in my heart for my sweet boys......I find myself everyday just staring at both of them in wonder. Rollie Pollie laughing, crawling, feeding himself, sitting UP! All of it seems like such a gift, such a miracle after Isabella. When a healthy child or children is all you know, you just take those things for granted. Of course they can sit up! Of course they can crawl/cruise/walk, Hello? Well, I've learned not every baby does those things. Not by a long shot. I took it for granted too. Now I know. It's a gift, it's luck, it's something you cannot see/touch/smell. You either get it or you don't. I have both, the good and the bad. Some only get good, some unfortunate souls only get the bad.

So I'm in a low spot again and that's OK. I know I'll come out of it, I somehow always do. The Rascals and I are taking a little weekend getaway and I'm excited.....well except that the highs are 105. Yes, that says ONE HUNDRED AND FIVE DEGREES. Ay yi yi! It should still be fun at least for the boys. We all need a little break so that we can come back revived and march on. Isabella wants that for us, that much I know.

Isabella, I'm still here and you are still there. I miss you, miss you like crazy and then some. You are always with me, in my mind, my thoughts, my actions, my heart. Loving you sweet girl, Mama

Where have the last four years gone?

My dear, sweet Turkey,

Today you are officially four years old. I can only vaguely remember a time when I was not your mother, and mostly I try not to. You have made my life so much fuller and beautiful in so many ways. I can still remember the moment I found out you were growing inside of me. I waited anxiously for the test results early in the morning in early November. I remember trying to busy myself with other things in the bathroom, when all I wanted to do was stare and the test and watch for that magical second line.

Obviously, the second line was there.............
You have always been such a sweet and sensitive child. When you were a baby you loved to be held, 24 hours a day, 7 days a week. Not much has changed.....although holding now isn't quite as easy as it once was. I have spent every day with you, watching you grow into the most wonderful little man. You have been through so much in your short life, more than anyone should have to endure and you have come through it with ease, much to your daddy and I's amazement.

There are times when you remind me so much of myself, it makes me catch my breath. Then you show your daddy's traits and I relax a little. You are funny beyond your years and often make me cry with your constant hilarity. Your comic timing is genius.

You have the most magical love for music and I am so excited to see where that love takes you. I hope you do more with it then I did, because I will always regret not sticking with my first love. You already have an adult taste for tunes, your favorites are Journey, Heart and Parliament. Classics. Like you. All I have to do is turn on "Give up the Funk" and you are dancing and singing away like it is the most natural thing in the world. And it is. Who needs a backseat DVD player when you have music man.........

Your sensitivity is something that worries me for your future. You have such a heavy dose of it; a lot from me and even more from your daddy. I have had to teach myself over the years to not be so sensitive and my heart aches already for all the pain you will endure over the years because of it. I hope you learn to control it someday, but never totally lose it. You will be hurt by other kids, by the girls, by me. Hopefully most of it will not be intentional, but merely a result of your sensitive nature.
You are a rockin' big brother, a total natural. When we had Isabella you never batted an eye. You were never jealous of her or the attention I had to give her. Through her illnesses, her struggles and my own battles, you stayed strong and caring, but never jealous. You seemed to sense that things were not well with your little sister and you were always so gentle and loving to her. You loved to just hold her and she loved it too. You love Rollie Pollie just as much, perhaps even more since you are older and more knowing. You have enjoyed watching him grow in the normal way. Hey, at least when you take a toy from him, you always offer to replace it. Heh.

Every day it seems you grow a little more, mature a little more and learn a little more. You love to be outside and could happily spend hours sans clothes running in the grass, playing in the mud. You are a true Daddy's Boy and light up the minute he comes home from work. When you were just a toddling baby you and I would wait for him to get home and your short, chubby legs would carry you to his truck where he would sweep you up and let you "drive" in the driveway. You still love to do that today. You have a very special bond with your Daddy and it makes my heart swell just thinking of it.

I hope you always know just how much we both love you, and how happy we are that we had you. You are a true miracle and everyday you are in my life is a better, sweeter day. I hope your childhood is filled with magic and wonder and that you never forget where you came from.
I love you sweet Turkey, you light up my life...........Happy 4th Birthday......you are the one and only ever YOU.

Love, Mama

It's been a while.........

I have been on my death bed. Well, not really, but I definitely felt like I was. Somehow I contracted pneumonia of all things and spent the better part of last week feeling like I was dying. (or wishing I was.....) It sucked. Big time.

So, husband and I have changed our minds and we are not going to move. Yet. We will definitely move next Spring, we just decided that now wasn't the right time. Husband will likely be switching jobs next spring, making a lot more money (please, God) and we may have a CITY change or possibly a STATE change in the mix. So we wait. I feel good about it, husband feels good about it, so there you have it. No move. It sucks because we got our house ready to list, moved some stuff out (yeah, really) and even packed some shiz. Damn! Oh well. I'm not un-packing any of it by the way. If I need, I will just fish it out of storage.........NOT dragging it all back out. Makes me shiver just thinking about it.

I have had such a wonderful, welcome peace about Isabella these days. It's so strange to me......I had begun to wonder if I would ever not feel totally devastated by my loss. If I would ever feel joy again. I think I will. I can finally see the light at the end of the tunnel. I have just had a lot of revelations recently and I believe God is finally showing me bits and pieces of the "big picture". I mean, Hello? It's about time.

I had some time to think last week (while I was dying in bed for four days and not writhing in agony.......drama much?) and while I was thinking I had this feeling come over me. It's hard for me to explain, and this may sound totally whack-a-doo, but I got this pneumonia out of nowhere. Nobody around me had been ill, I had felt totally fine and WHAM! I was just knocked flat. I have never had pneumonia in my life and while I suffered (because you should know that my insurance was canceled LAST MONTH and I get new insurance NEXT MONTH....so naturally I should almost die like, NOW..........the hell?) this "voice" just spoke inside of me and said "this is a slice of what Isabella went through and what she would have continued to go through if she had lived on." Whoa. Big Whoa. It was like an "A-Ha" moment I guess. I have been torturing myself this last year, wishing Isabella was still here, tricking my mind into thinking she could have lived longer and been healthy. Yes, I truly believe my suffering last week was intentional so that I could see through my sweet girl's eyes what her life would have been like. What her last pneumonia was like. All I can say is, thank goodness she went home when she did. He life was short, yes. But it was so full of love every single day she lived. Her suffering was short.......and I want to be happy for her now. I want to rejoice in the fact that she is living the most beautiful and wonderful existence with her Creator. Her days are perfect and joyful. I know I will get to live that life with her someday, just not yet. I cannot begin to understand why she was born with her condition and why she died when she did, but I have to remain faithful. I have been struggling with this for months and once again, I am coming full circle. I always come back to God, every time, without fail. He has spoken to me and I am still......and listening. Isabella is happy now, free and loving every minute of it. She does not miss me and I have to be OK with that.

Of course, this recent development in my emotional journey does not make me think I'm suddenly "OK" with things or "moving on". I'm simply beginning to make peace with myself, with God and with my life path. I'm certain that I will always carry the grief of losing Isabella with me, it will just be different with each passing year. Life isn't always what you make it, I've learned.......sometimes, or maybe a lot of the times, it just happens. Then you get to decide how you will tackle it. I'm a head on kind of gal I guess......

I'm just starting to feel good again, I'm not 100 percent by a long shot, but thankfully I am not dying. I mean really, I side stepped at least 3 illnesses this last winter when everyone else in my house was sick and then June rolls around, everyone is healthy and pneumonia??? This world is beyond what I can understand, truly. ]

But you know, that once my new insurance kicks in I'll be totally healthy again for years. Figures!

It's almost over

and I survived. Again. I'm starting to wonder just what it is I'm made of? Something pretty darn tough, whatever it is.

It (the anniversary) wasn't as horrible as I had thought it would be. Her birthday was a lot harder and that surprised me I guess. Nobody called us today and nobody remembered. (except you wonderful internet friends! I wish I could scoop you all up and have you here!) Unfortunately husband and I have come to expect this from our (un-supportive) family. But that topic deserves it's own post, really. I have some real anger issues with our family members as of late........

Husband said something in the car today that really struck me and totally helped me limp a little easier through this day. He said that in all actuality today was a good day for Isabella last year. We are the ones left suffering, but hers is truly over. He even quipped that in Heaven they probably celebrate the day they died, rather than their Earthly birth. I wonder if he's right....? Whatever the case, it sure gave me some peace of mind and really opened up a different view for me. I can get pretty caught up in my loss.

So today we celebrated her. We had a picnic at the cemetery, (sounds morbid, but it wasn't I promise) we brought new flowers for her vase (both real and artificial, pink of course) and a pinwheel from Turkey. I shocked myself and didn't cry. Or sob. I just had a sense of peace and being carried through today. It was a nice change of pace for sure. I really feel like Isabella was with me today.....I felt her holding my heart more than once almost whispering "I'm happy now Mama, don't cry for me, be happy that I'm free now." I know that is what she wants. I just struggle to get there on a daily basis.

I busied myself throughout the day with things around the house and hugged both my boys a thousand times and kissed them a million. I really love those stinkers and they deserve a present and clear mama. I'm working on it........... Again, I know in my heart is what Isabella would want for us.

I tried to not focus on her death today and the time that she died last May completely slipped by me, as I was lost in bathing, singing, hugging and kissing goodnight, my two sweet boys. I think today I made some real progress in my grief and it's ironic how it's been exactly one year. One whole year and I just might start to put my life back together.

It's as though, I can breathe again. A little anyways.

As the years pass, I know this will get easier. In a way that relieves me, but also makes my heart sad.........to know that I will eventually not think of her in every moment. I will get caught up again in life and find joy once more and the sadness will lift. I know this is *good*, but it comes with a price. Just like everything in life, this is no exception.

To my sweet Isabella: Like your Daddy said today, you are rejoicing in your new life today. You are free of your body and all its suffering. You breathe freely, you laugh, you run. Everyday is a happy day for you, surrounded by love with Jesus and I am happy for you my darling. Although not a moment goes by where my heart does not ache for you, I am reminded that you are now so beautiful and at peace, in a way you could have never bee on Earth. I see you in your brothers everyday and my heart sings and cries at the same time. Please watch over your brothers, especially Turkey. He misses you so much and speaks of you daily. His heart is broken too and I know you can hold his like you hold mine. I cannot even imagine the beauty you possess in Heaven and I cannot wait to feel your tiny hand in mine once again and feel the warmth of your embrace. We may not be together as a family here on Earth, but I have no doubt that our day will come in Heaven and our family will be complete again. I love you and miss you terribly. Thank you for helping me today...........

Waiting it out

For the record, I have no idea why in my previous post, the last half is teeny-tiny print. I've tried to fix it a million different ways and I give up. YOU SUCK BLOGGER.

So, the anniversary. It's Saturday, did I mention that? Yeah, three days away. One year. One whole year without her. I cannot even wrap my mind around it really. Some days my life with almost seems like a beautiful, yet nightmarish dream. Other days it was if I just had her in my arms just yesterday. I was just crushing 8 different medications and feeding her all her thickened bottles of formula. It's been a long time though........a whole year, remember?

I thought I was going to make it through this week OK, I thought I was handling it well. I was wrong. I've started I don't know how many fights with Husband over stupid, asinine things. I've been a real snapping turtle with Turkey, and haven't been able to discern why I feel so plain awful. Oh yeah, my daughter died. That's it........

I find myself spacing out, getting dizzy for no reason, crying randomly and earnestly. Oh and lets not forget eating.......because that is my solution for dead-child-syndrome. FOOD. Man, I'm a psych doc's dream.

It probably doesn't help that we are in the midst of trying to find and buy a new house. Part of me is so excited for this, because hey, who doesn't like a new house? But of course, part of me is horribly, terribly sad, because this is the house where Isabella lived.................and died. What do I do with that? Of course, I can't stay here forever unfortunately. We were actually looking for a new house right after Isabella was born and then the seizures started and well, you know the end to that story.

I know she's not here in this house and it's not like if we move she'll stay or here or something crazy like that. It will just be very hard to sell this house to a new family and not ever come back. I don't even like thinking about it.

A year ago today Husband and I decided it was Isabella's time to go home. It wasn't an agonizing decision, it didn't take hours of screaming and crying like I had pictured in my mind so many times. I had spoken with her doctor over the phone early that morning while Husband, my mom and Isabella's hospice nurse sat by waiting. I'll never forget that conversation. I had just told him that the antibiotics had not changed anything for our girl and that she was in fact, three days later still running a very high temperature and no amount of motrin/tylenol would stop it. She had stopped sucking first and shortly thereafter stopped swallowing. We were at a loss. Why now? What changed in her brain? More importantly what do we *do*.

He said to me "Michelle, we can always put her in the hospital, put her on an IV antibiotic. That's an option. But, since she cannot suck or swallow any longer and her SATS are so low (oxygen) you know what will happen." He paused. I paused and then said "You mean, a feeding tube, a ventilator, etc, etc, etc." "Yes" he replied. He continued, "I know how you and Husband feel about that sort of stuff for Isabella, so I just want you to consider everything." I sat there for about 30 seconds and said simply, matter-of-factly, "It's time isn't it? We won't be taking her to the hospital." He just said "OK then, let me know what you need, when you need it."

That was that. I had just decided that I would not save my daughter's life. I would let her die.

It simply goes against the laws of nature to make a choice like that. And I guess I don't have to tell you it was not an easy choice. If I had been selfish and thought of only myself, I would have had her at the hospital in 10 minutes. But I knew in my heart what she wanted from us as a family, what she would ask for if she could have. I wanted to ignore what my heart was telling me, but I couldn't.

I will struggle with this choice for the rest of my life on Earth. Every.single.day. Not in the sense that I regret it, or think I made the "wrong" choice. But just in the sense that now that I know what life is like without her, I wish I would have been more selfish and forced her to stay alive. I know that's awful, but I can't help but feel that way now. It was a lot easier to let her go when I didn't know how painful it would be living my life without her.

I have to remind myself of her suffering. I hate thinking about it, but I have to. Otherwise I get caught up in this fantasy of having a thriving daughter and completely forgetting what her life would have really been like had she not died. At this point she would be totally bedridden and I would not have the time to feed her 6 times a day and hold her all day. She would get all of her feeds through a tube. She would have been in and out of the hospital all winter, because every little cold Turkey got would have been full blown, life threatening pneumonia for her. I would have a busy 4 year old and a healthy 7 month old and a very disabled little girl. I would have finally had to cave and hire help and that would have killed me. When she was here I would hardly ever let anyone help me, she was MY daughter and she needed ME. I was very selfish with my time with her and I will never regret that.

I miss her and the thing that bothers me the most is wishing I could watch her grow up. Wondering if that was my only chance to have a girl and I came thisclose and it slipped away. My life on Earth seems so long and lonely now without her. Yes I love my two sweet boys and my Husband, but I will never have that piece of my heart back. Nothing can replace what is missing now.

I told Husband last night, while I was hysterically crying that all I want is "for Isabella to be here and to not have Lissencephaly." At some point I have to accept that it isn't going to happen. This isn't a really bad dream, this is my life.

I miss you sweet Isabella, more than you know thank goodness. I know everyday for now is ten times more beautiful than it could be on Earth. I know you are surrounded by warmth and love every minute of every day. We will be together again someday and God has promised to keep you little for me so I can raise you in Heaven when I get there. I cannot wait to see your first smile at me and hear you say my name. To watch you dance and run and hear your sweet laugh. I know I will have to wait a while, but it will be so worth it. I love you so much baby girl, I hope you know it. We are always thinking of you and talking about you, but I'm sure you know that. Turkey asks about you almost everyday still and always wants to hear stories about you. He still has some great memories of you that he'll always cherish I know. We know that wherever we go, you will follow. You will always be a part of our family........death can never change that. I love you , I love you, I love you.

Thank God I'm breastfeeding

Or I would be drunk as a skunk every.single.night right now. Just to numb this damn pain. I'm so tired of feeling so sad, so lost, so EMPTY. Oh and let's not leave out poor neglected ANGRY. Yeah, 'cause I'm that too. I'm a lot of things unfortunately and none of them are good at this time.

On the 31st it will have been one year. ONE YEAR WITHOUT MY DAUGHTER. One year without holding her, smelling her, kissing her, feeding her, medicating her, suctioning her, and loving her. Well, of course I still love her, but not in the same physical sense. You know what I mean. Or not.

You know I realized something recently and it broke my heart all over again. One night, I watched this movie ("P.S. I love you", and yes I cried my damn eyes out) and there is this part where the main character realizes that "he's gone, she can't feel him anymore" and I lost it. Because that's just it lately. I don't "sense" her or whatever anymore. For a long time after Isabella died I still felt her in this house and we had some pretty strange things occur that I believe were all Isabella. But lately something had changed and I just couldn't put my finger on it.....but there it was. She is really gone now. I fucking hate that.

I really lost it the night I realized that. I wandered the house just trying to "feel" her.....anywhere. I got nada, zip, zilch. Husband says "that's a good thing". I mean, I guess? Yeah, yeah, I want her in Heaven and to be happy and care-free, but what about me??? What am I supposed to do without her?

Be happy? Move ON?


I just can't do that it seems. Or at least I am really struggling with that. I feel this tremendous guilt at even thinking of "moving on" (which really, how does one do that after burying a child, I'm curious?) I'm probably a little scared as well. Scared to be happy, to feel unafraid again. What if something else happens? I mean, I'd like to think Isabella filled my "dead child" quota for this life, but somehow I don't think that's how it works. I've heard some pretty sad stuff.

I feel like I am not being a good mom these days. I snap, I yell, I curse, I ignore. Not all at once.........well usually not all at once. I hate acting like that, but I feel a little out of control I must admit and I don't know how to handle all this shit. I have these two beautiful boys right here in front of me and all I want to do is mourn the one that died. I just want to lay in bed and cry and yell and sleep. Oh, blessed sleep. But I don't get to do that. I can't decide if that is a good thing or not.

And then there is the actual D-Day. (That's death date to you mere mortals). How do we handle that? Do we lock ourselves inside away from the world and sob our eyes out? Do we celebrate her life? Are we even capable of that? What do we do????? Really, I'm open to suggestions here. I'm at a loss.....this is my first time and all.

So here I sit. Struggling in my battle once again. Maybe at some point things will be on a long upswing........at least I hope so.

I'm off to bed to get some sleep or what I like to call "not sleep because I'm breast feeding my teething 6 month old all frackin' night long." Damn I'm tired!

I survived

Mothers Day that is. It started out pretty rough, but I got a grip and enjoyed the rest of the day. I decided it simply wasn't fair to sit around and mope (OK, sob my eyes out) when my two boys need me and want me so badly.

It's such a delicate balance, to have healthy children living on and a child that is gone. I can't really explain with words what it feels like have aching arms, when they are in fact full. It's surreal and part of my baggage I guess.

So, Mothers Day. Dear, sweet husband started my day off right with flowers (picked out by Turkey himself!) and belgian waffles with sausage. Mmmm Mmmm Mmmm. I ate said breakfast while lounging (yes, LOUNGING, egads!) in bed watching a total make-any-man-puke-full-on-chick-flick! It was bliss. True bliss. I then lounged MORE while Rollie Pollie napped and breastfed, napped and breastfed for TWO HOURS. Whoa. I know.

Then I got up. The end. Oh, just kidding. We went to the cemetery and it wasn't bad at all.......I'll talk more about that at a later time. I ate insane amounts of delicious and uber fattening foods and it was good. I had a wonderful day with my sweet family. I really do love my family, in spite of everything....I love them a lot.

Turkey told me about one thousand and fifty times that I was the "best mama ever!" and the "prettiest mama ever!" and "Happy Mothers Day Mama!". What a stinker.

Oh and the best Mothers Day gift of all? Rollie Pollie has said his first word............"Mama". I have waited since Turkey to hear another one of my children utter my name. I would have given a million dollars to hear Isabella's sweet voice say it. Alas, I will have to wait for that one. But Rollie Pollie is just as good :) We are surprised that he is "talking" so early, but he comes by it naturally! Now, whenever I leave the room I get "Mama! Mama! Mamamamamamama" (shortly followed by wails of despair because I've been gone long enough to pee.)

Oh baby!

OK, that's it. It's over. Big sigh. Big, long, sigh. On to the next dreaded date. We'll see.

Mothers Day is not my Favorite Day

Two years ago, we received the worst news imaginable three days before Mothers Day. That weekend was so foggy and emotional for me. I had just been handed this disorder and had no idea how to handle it. To say I was depressed would be putting it very mildly. My mom had come over and shoved me out the door with Turkey to spend some time with him and try to enjoy "My Day". Right.

So I robotically (is that a word?) took Turkey to the park to play (It was a beautiful day) and it was an awful experience. As I looked around at the busy park I couldn't help but notice all the joy...the sheer happiness everyone was exuding. Except for me. All these people and their shiny perfect lives, healthy kids, celebrating and rejoicing. Except for me. I spent the entire time crying behind my sunglasses and faking smiles and "hello's". I was beyond miserable. Trapped in a world I never imagined. My life had just been shattered and here I was at the freaking park.

I wanted to enjoy Turkey and take solace in the fact that I had him, but I wasn't ready for that yet. I wouldn't be ready for a while longer. I mean, seriously, it had been three days. Not even close to enough time to process things. I hated Mothers Day.

Last year was a little better. Isabella was on a huge up-swing and Husband had said I could lay like broccoli in bed all day and watch chick flicks. Around 10 am he brought Isabella in the room and said he was about to lay her down for her nap and I said "give her to me, let's see if she'll sleep with me in bed". This may not sound entirely unusual, but for Isabella it was. She hated to be "cuddled" most of the time and preferred laying all alone in a nice bed. I cuddled her up next to and you know what? She slept. Like an angel. Like a normal baby would. She cuddled with me for two whole hours just she and I. I stopped watching the movie and instead stared at her.....studied her.....took her in. Maybe my heart knew the end was soon? Who knows, but two weeks later I suddenly lost her and I was so grateful for that moment in time.

With Mothers Day quickly approaching I'm feeling very heavy and of course, sad. I have my two healthy, wonderful boys of course, but I would be lying to you if I said that was enough. I'm greedy like that I suppose. It's not enough. I want Isabella here too.......it's the only thing I want for Mothers Day. The impossible gift.

So for the rest of my life, Mothers Day will also be the same time of year as Isabella's death. Perfect. I will always have to fake a smile and pretend I'm OK for my living, healthy children, but below the surface, I will be crying, wishing my baby girl was here to celebrate this day with me. Like I said, I'm greedy.

Not all Mothers have everything they want on Mothers Day. Some of us are left aching, yearning for something more.

And yes, I am of course grateful for my two healthy boys. I am still blessed and all that. I just don't have everything I should. That's entitlement you smell and I make no apologies for it. I never will either.

I hope every mother who reads this has a wonderful day and I hope you have all of your children with you to hold and love.

I knew the day would come

When I would hear a mother call her daughter's name, and it would be "Isabella". Last week Rollie Pollie had his 6 month check up (he's doing fabulous by the way) and I was standing at the counter filling out more paper work (yea!) because the office has a new computer system. So I'm standing there, minding my business and what do I hear? Three.little.words.

"Isabella come here please!"

A mammoth sized lump immediately lodges itself inside my throat and I look. I have to look. I don't want to look at this Isabella-girl, but I have to. To see. Does she look like MY Isabella? She was in fact, there for her 2 year check up. Perfect. Great. Wonderful. Praise Jesus, she didn't look a darn thing like my angel, I was at least spared that much. But still. A sweet, two year old Isabella running around, talking, smiling, laughing, playing, throwing a beautiful temper tantrum. I glimpse of what I could have. What I should have, but do not. Can not. Will not have. That sucks.

I somehow managed to pull myself together, and NOT cry hysterically at the front desk. I even managed to tell this other Isabella's mother where I got my sling when she asked......without a freak out. One down, a million to go I guess, right?

Well, I'm officially in the "death date month". Yipee. Much to my surprise it hasn't been as horrible as I had dreaded. The birthday was awful, awful, crappy, terrible.......so maybe this won't be as hard. I can only hope. Two months of emotional over-eating, crying, yelling, no sleeping, agonizing over every detail of her death can't be good for me? Right?

Yes, I agonize over her death. Incessantly. Unhealthily. Every detail. Every decision. Everything. Sometimes I just lay in bed and can't turn the horror movie in my mind off. I want to, but I can't. I can still see her..........dying in my arms. I can still hear the awful sound the last of her breath made when it was over. Over for her, but not for me. I can still hear my own screams and cries when she left me.

I will tell you the most difficult part of the night Isabella died. This is something that haunts me and I'm afraid it always will, because I have never had to do something so incredibly difficult in all of my life and I pray like hell that I will never have to do it again. After Isabella took her last breath, I held her....and so did Husband. Family and friends slowly left the room, our Pastor came by to say a prayer over our family and I held her. For as long as I could. I know we were lucky to have her pass in our home (if you can consider any part of my story "lucky" that is) and I am grateful for that small part. I was able to hold her as long as I wanted........to a point anyways. I know she passed away around 8 pm that night......and the last time I saw her sweet face was sometime after 11 pm. Our hospice nurse, who had become one of my good friends, came in and told me whenever I was "ready" they would make "the call". "The Call" was to the funeral home. I sat in bed, holding my sweet girl, wrapped in my favorite pink blanket not wanting to ever make "The Call". When was I ever going to be ready? I mean, really? Not ever.

So I finally told her to make "The Call" and I waited. I cried. I waited. When he got there I was just beside myself. I was crying uncontrollably in front of who knows.......I didn't care. I vaguely remember someone saying "let it out Michelle, it's OK" and boy did I. I just couldn't believe I was sitting in my living room on a Thursday night holding my dead daughter. Just sitting there. It was beyond surreal.

I can't remember the man's name who came to get her, but I will always remember his compassion and the delicate way he handled us.......and Isabella. I didn't know what to expect, I had never done this whole child-died-in-my-house-what-comes-next-thing. He came in a black Suburban and asked us for Isabella's car seat. He wanted to take our precious girl in her carseat to the funeral home.

I can barely type this you should know.

I was so appreciative that he didn't want to just lay her in the back, because of course she was not just a dead body to us. She was still my Princess. None of it seemed real to me. The whole evening was like an out of body experience. Truly it was as though I was watching it, not living it. I couldn't be living this nightmare you see, not me. It just doesn't happen to people like me. Only others.

So I put my Princess, my Isabella in her car seat. I buckled her in just like I would have on any other day. I was hysterical of course and furious and devastated and a million other things. At point, and this is God's honest truth, I almost took her and got in my car. I don't know where I was going to take her, but I just couldn't let someone take her from me. I couldn't handle the idea of truly never touching her again. Never holding her again. It was over and I wasn't ready. Isabella was ready......she wanted to fly, to play, laugh. Letting go of her soul was so much easier than letting go of her body.

Husband and I held each other as we watched the man drive away with our baby. Our daughter. That moment is forever etched in my mind. Like I said, it haunts me and tortures me. For how long, who knows......

After that, family slowly trickled out and we were left alone. The silence was deafening. I stayed up very late that night putting a montage together of her life, our life, working so diligently to get it right. To make it perfect. Like her.

The next few days and months are all pretty blurry after that. At her funeral two days later I was an empty shell of person on shock mode. I smiled, I waved, I hugged....but I was empty. I was not there. I had checked out. I do remember coming home from the funeral and collapsing on the couch and crying uncontrollably until I fell asleep.

I miss her. I miss her so much it hurts......I ache to touch her, to hold her, to simply smell her. Just once.

What I would give of myself, my life to just see her happy and healthy. To watch her dance, smile, laugh or wave. To hear her call me "mama". Anything.

I will have to wait and try to understand God's plan for my life and for hers.............that sounds so simple, but let me tell you, it is not. Or easy. Or fun.

My sweet darling girl, I miss you every moment of this life. I will always think of you on bright, sunny, breezy days, the days you loved the most on this Earth. I hope everyday in Heaven is just like that for you. I cannot wait for our family to be together as one in Heaven and to be a Forever Family. I know you are watching over us everyday, I can feel it. I love you forever sweet Princess.

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Happy Wednesday!

On to the next dreaded day.......

As if the birthday wasn't bad enough, I now get to dread D-Day. That's death date to you. This time last year Isabella was just getting over her first big pneumonia and we were all breathing a huge sigh of relief. I had spent two long weeks holding her limp, weak body all day and stayed up with her all night. Yes, for two weeks I maybe slept 24 hours TOTAL, while newly pregnant. I'm feeling tired just remembering it. It was rough.....to say the least. As a result I also came down with a wicked case of bronchitis. Laying in bed all night, holding your sick baby will do that to you. I remember laying in Jackson's bed with her, watching her fight for every breath. Adjusting and re-adjusting her nasal cannula, suctioning her out with that awful machine and praying. Lots of praying. We ran her through three antibiotics in those two weeks. Yes three. I gave her morphine for the first time and I was so terrified.

Our hospice nurse had walked me through it, but since she only needed the morphine at night to slow her respirations down, I had to do it alone. Solo. All by myself. I remember giving her the first dose, saying a quick prayer and watching the pulse ox with wide, frozen eyes for one hour straight without flinching. Waiting. Watching. Waiting. Watching. You get the idea. I watched her heart rate drop pretty dramatically at first....held my breath and it maintained. Praise Jesus! She would not die because of the drug I gave her.......ohthankyouthankyouthankyou. I miss her. Even during those nights, I miss her. I know she wouldn't want to relive that moment of time, but I would if it's all I could have. In a minute I'd do again. I poured every ounce of myself into her and I wouldn't change a damn thing.

I had no idea as Isabella turned that corner and suddenly beat the pneumonia that in a month I would bury her. Just as I had no idea as I gave birth to her, that I would bury her 14 months later. That this disorder, this monster would tear our lives apart. Have I ever mentioned that I really hate, hate, hate Lissencephaly? I do.

It's funny because after the pneumonia Isabella did so much better. It was like a cloud had been lifted, she was so alert and happy and clear. She even ate her last month of life and drank juice! She drank juice I tell you! And I am happy to tell you she ate one single STRAWBERRY. Yes siree she did! (I'm telling you I was so excited the afternoon she ate a strawberry I just about called CNN, but decided it wasn't *that* major....almost, but not quite.)

I seem to get more and more distraught about her death as time passes and that puzzles me. I don't know if that is "normal" or whatever, but I think it has something to do with the fact that as time passes I begin to forget her suffering. I just remember her sweet face, her smell and holding her. Oh and of course feeding her....I spent many hours doing that. So I think my heart is so sad because I don't remember her daily seizures and the breathing and the arching and the and the and the. Her breathing was awful....truly terrible. I couldn't take her anywhere without someone asking "is she OK?" "Does she always breathe like that?" "Oh my! Is she sick??" (as they shield their kids as to avoid her disease) No. That's just how she sounded. Everyday. Awful I know. Actually I don't fracking know. I'll probably never know how she felt. What it was like for her. I probably won't suffer a fraction of what she endured on this earth. My sweet angel, my baby girl.

My mind knows it was for the best......my heart just can't figure it out. It's slower to grasp things I guess. My heart wants her back so badly......even despite her suffering. My heart is terribly selfish and would take her back and make her continue to suffer this very instant just so my heart could love her again. My heart is missing a big piece right now, and can you blame my heart for wanting that piece back? My heart just doesn't want to believe that the missing piece will not be put back for a very long time. My heart is stubborn and just won't let go.

I love you and miss you sweet Isabella and I cannot believe it's been almost a whole year since I have held you and kissed you and whispered "goodnight sweet angel" as I laid you down to sleep in your beautiful pink haven. Every part of me aches for you and misses you. You were an amazing little girl and you did so much for so many in your short life. Your spirit lives on in myself, your daddy and your amazing brothers. We will never forget you.........

I'm still here and have a lot to write about

Rollie Pollie is a teething mess. Really. Truly. Teething. Mess. My sweet, adorable, goofy, smiling boy has been replaced by a screaming, crying, thrashing, never sleeping cranky pants. Waah! Someone pass the Motrin. And Vodka. Oh just kidding! I'm breast feeding for crying out loud! In fact, with this dang teething, I'm breast feeding a lot and the chewing/biting isn't my fave. I don't really think I even have nipples anymore.....at least not nipples that I can feel. Oh, you just wanted to know that didn't you??

We went to the Zoo today and it was the most miserable experience there yet! I should have just turned around the car when I saw the loooooong lines, the hoards of children and school buses. But no, I persevered, I dug my heels in and said "We ARE GOING TO THE ZOO TODAY!" It sucked. Kids everywhere. I love kids, I do. I just don't love 5 million, bazillion, gatrillion kids at the zoo. Especially when I have a three year old who was up late the night before, awoke early this morning, decided to skip breakfast and throw temper tantrums the first hour of the trip. I swear, he was possessed and I almost called a priest. Instead I bought him some french fries and it worked better than any holy water. Ah, my sweet boy was back. By then I'd had enough though and we left....which you would think would end the horrible day, but oh no, we were just getting started!

In the car Rollie Pollie started screaming about 2 seconds into the 30 minute trip home and screamed the ENTIRE way. And by screaming, I don't just mean, baby crying, I mean screaming.....choking screaming.....gagging screaming.....rip yo mama's heart out and make her crave a valium screaming.

So we get home. Rollie Pollie is all better as soon as I get him out of his torture chair of doom (aka the car seat) and we go inside. Ah, that's better. Right? You should know by now the answer to that....

We haven't even been home for 5 minutes, 5 MINUTES and what happens you ask? I'll tell you! Turkey somehow trips and do you want to know what breaks his fall? I'll tell you! His freakin' HEAD slamming onto the coffee table. That's what broke his fall. Frickety, Frackerty, Frack! So I put Kingston down (yeah, still holding my teething monster, hello! he doesn't like to be set down!) pick Turkey up, who incidentally is now screaming his head off, look at him and see a giant gash under his chin and it's bleeding like there is no tomorrow. Grrrrreat. Of course I feel awful and comfort him and clean him up. I call my mom the nurse, she rushes over with dermabond (oooo did she swipe that from the hospital.....???) and then oh, then, we get to hold Turkey (who is no longer "turkey" but a wild, thrashing cougar) down and glue his chin back together. OMG. Let me say that one more time. OMG. Somewhere in the mix Husband showed up for lunch, helped me (thank God!) and we got Turkey all calmed down. As for all the therapy he'll need in his thirties, well, I just can't help that. Did I mention it was like seriously freaking nap time when all this shiz went down?? Well it was. Oy vey!

I'm just glad the day is over. Amen!

A step.....

Today we took a step. A baby step. We moved our computer and desk out of the den and into Isabella's old room. And I didn't breakdown. Not once. I actually feel really OK with it and nice. Right now, as I type, I am sitting in the dark, drinking a nice cold beer (it's heaven on earth I tell you) and blogging in my sweet girls room. I like it, it's peaceful. Her room has never been off limits since she passed away. I have the diaper changing table in here still for the sole purpose having a reason to come in her every single day, several times a day. In the early days after Isabella passed away it made my heart very heavy to come in here, but now I find peace. I decorated her room with such love, it still means something to me and to husband. I can see the bouquet of dried roses from her funeral hanging on the wall. A plate I made for her that was a gift her first Christmas....I wrote "Isabella: A real life Princess" on it. I can see a hook with the only hat I ever bought for her hanging from it....she never wore it, she hated for her head to be touched....I mean, really hated it. In her crib is the only toy she ever showed any interest in, it's a green lizard thing from Baby Einstein. She knocked it over a handful of times ON PURPOSE, which was freakin' huge for her. No child of mine will ever play with that. Period. There are about a million different little things that say "Princess" on them in here. I realize that a lot people in this world refer to their daughters as "Princess", but I don't care. To me, it's only meant for my sweet Isabella. Every morning when I heard Isabella stirring in her crib I would open the door and in my best sing-song voice I would say "Good morning Princess!". She loved that. So did I.

Of course, we've had several family members ask us when we are going to "change" it, I guess they mean take her bed down and get rid of all signs of her living here with us. Well guess what? We're not going to....maybe not ever. What do you think of that family? As it turns out, we don't care what you think. Ironically enough, nobody else in either of our families has ever lost a child. Not one. Husband and I get to be the first. Lucky us. Now we're kind of like lepers....and everyone has advice for us on what they think we should do. How we should be handling this loss. You know what? If you are reading this and you've never lost a child (thank your lucky stars by the way, for you are indeed lucky) if you ever happen to meet someone who has or will someday, please, please, please keep your mouth shut and offer support. That's it. Maybe send one of those cards that says something poetic about God and his "plan", but don't offer "words of wisdom"...chances are your wisdom will be misguided and hurtful even though it's not your intention. One of these days I'll get all ranty and write down my list of things you should never, ever say to parents experiencing a tragedy. Oh, how I could go on. I could write a book I tell you. Maybe I will. It will be called "oh shut up already!" I'm kidding. No I'm not.

So I like our new "office"/Isabella's room. It's not bad. And now the den is devoted entirely to toy mayhem. Turkey is in looooove. Gosh I love that silly boy. He's taken to saying "butt-hole" lately. He put two and two together and thinks he invented the word. Hm. I can't help it, it's so darn hilarious when he says it. I'm terrible, I know. I try to be a good mom and not encourage naughty behavior, but I have such a morbid sense of humor and an almost four year old saying "Oh my butt-hole itches!" is hi-lar-i-ous, no matter how you slice it folks! And I mean really, you can't get more literal than "butt-hole", it's a hole in your butt for crying out loud! I haven't said "butt-hole" since I was like, I don't know, TEN or something so he didn't hear it from me. Unfortunately he's more likely to hear something worse than that out of my mouth....like I said, I'm terrible.

So there you have it, I went from my sweet girl, to my potty mouthed little boy in two seconds flat. That's how my mind works.......really.

Isabella, I love you so much and I know you are always with us. We think of constantly and you will never be replaced or forgotten. I love you baby girl. Take care of your brothers, they love you so much (especially that Turkey). Goodnight my Princess.

The paper bag puppet wasn't such a good idea I guess

OK, so the other day it was raining cats and dogs where we live......which is lovely unless you have a 3 year old little boy who is climbing the walls and it's only 8:21 am. So I rummaged through our craft shelf and found these leftover paper bags and thought "ooo, we can make some silly little puppets, Turkey will love that!" (Aren't I just the most creative, most awesome mom?) Actually I'm just a desperate mom....

So, I explain to Turkey how we are going to make our puppets and he is very excited (thank goodness, right? not all of my ideas are so well accepted) I make a puppet for myself with curly crazy hair (a certain rollie pollie has left me no time for my soul mate aka the CHI) and Turkey laughs and decides to make one that is him. We have fun for a while and then he says: "hey, I want you to make one for sister." Hm. At this point I think something along the lines of: "well, I don't really want to do that, but he does......shit." So I make a puppet for sister. How can I not? Here is where it gets interesting......and by interesting, I mean really heartbreaking. (You have been warned!)

Turkey then puts the puppet that represents himself on one hand and puts the puppet that represents Isabella on the other and has them face each other. Then he speaks. "Hi sister, I love you sooooo much" says the Turkey puppet to the sister puppet. "Let's go to the zoo sister" (he makes motions like they are walking) "Look at those hippos! And the lions! Oh, zebras, look! sister". (So at this point I am having a full on emotional break-down, INSIDE MY HEAD because I can't let Turkey see how much this pains me.) Basically Turkey went on to "play" with sister for another 20 minutes or so, doing all of his favorite real-life things with his sister via a brown paper bag. Does it get any worse? I think not. Then he said it: "Mama, I'm so glad I got to play with sister today." That's not fair. My wonderfully innocent, sweet boy has to play with his little sister by using a BROWN PAPER BAG........ WHAT THE FUCK IS WRONG WITH THIS WORLD?

OK, I know that was harsh, but that's what I was thinking. No censor. I'm not in a good place this week. Not at all. As you can probably tell by now, right?

I know the whole paper bag thing was more than likely "theraputic" for Turkey and all that, but it just reminds me what is missing in our lives. Like I need extra reminders, Ha. Sometimes I get so caught up in MY loss, I forget that Turkey has lost his sister. It sucks.....no other way to slice it. He keeps asking me when he's going to get another sister and I just never know what to tell him. I don't make plans anymore, I realized in the harshest of ways that there is no point in making plans in this crazy world. My plans certainly didn't pan out the way I thought, so I don't want to set myself or Turkey up for more disappointment. I love that little man, I really do. I would give anything to give him another sister. He deserves it. We'll just have to see won't we?

Happy Birthday Isabella

Well, the day is almost over and I survived it. There were a couple of moments I must admit where I did not want to survive, but I did. I am so thankful for you Husband (if you read this I heart you, I really do). We have this great partnership and when one of us falls apart the other is there to pick up the pieces. We traded off a few times today......... I love you honey and I couldn't do this without you!

I would bore you with the details of today, but I'm just emotionally spent and ready to wake up tomorrow and start again. I am determined to have a fun day with my other two rascals tomorrow and hopefully enjoy some spring!

To my Isabella: You are my forever girl, my sweetest angel and my heart. I love you more than words, more than my breath, more than my own life. I have faith in God that we will be reunited in Heaven again one day and that you will be complete and the whole the way you were meant to be here. I hope you danced in your pink tutu all day, breathing and loving your new life. I know you are surrounded by light, love and eternal sunshine, what more could a mama bear ask for? I love you so much and until I see you again, keep dancing sweet girl, keep dancing......

Oh and HAPPY BIRTHDAY! We love you :)

*to everyone who called me today, sent me wonderful messages and emails, and acknowledged my pain and loss without embarrassment, I love you and appreciate you more than you know. My strength is magnified by you guys! I am continually humbled by the compassion of those around me. Thank you.*

Tomorrow

Tomorrow would be the day you turned two years old. Tomorrow would be the day that I would wake up and tell you all about your wonderful birth. Tomorrow would be the day we ate cake together and you opened all of your gifts (probably pink and lots of it.)

Tomorrow will be hard for us. Tomorrow there will be no gifts opened. Tomorrow I will not get to wake up and tell you about your wonderful birth. Tomorrow I will still miss you like crazy and wish with everything in me that you were here.

I love you sweet girl and I know somehow you will get us through this. Your daddy, brothers and I will celebrate your beautiful and sweet life tomorrow and try to take comfort in the small fact that we had you for a short while, instead of not at all. I miss you and take comfort in the knowledge that you are free and happy now and that someday we will be a forever family in Heaven. I will see you again someday, of that I am completely sure. I love you, I love you, I love you!!!

Your light shines on baby girl!

Love
Mama

Oh, one more thing!

Isabella at her birthday party last year.......this was the only moment she opened her eyes for the whole THREE HOURS! What a stinker! And you know what? As soon as everyone left she opened those eyes and wanted to party, just she and I. What a rascal! I love you baby girl. I know this year you will be dancing away in that pink tutu of yours. I'm glad I let you take it with you.............I carry your heart, I carry it in my heart. Always.

And the countdown continues......

to Isabella's birthday. Thursday is just looming ahead and looming and looming and did I mention that it's looming?? If you haven't figured out that I use a little bit of sarcastic humor to deal with my shiz.....then you just aren't the sharpest tool in the shed. Sometimes my "approach" offends people, but then you have to ask yourself "does Mama to Many care?" Indeed I do not. I am me and that is what makes me, ME man! When your sweet daughter is born with a rare and incurable horrific disorder called Lissencephaly and then dies, you can deal with it however you like. Or not deal with it. (which I don't recommend by the way.)

So the birthday. My sweet, beautiful girl. I've had a certain peace about it the last couple of days and I know it's because of her, my Isabella. I was spiraling into the depths of a deep depression the last two weeks and right when I needed it most, I felt calm again. That's her.....working her sweet girl magic on her sad broken hearted mama. Oh how I miss her sweet face, her soft smell and to die for lullaby coos. I miss our "chats" in the morning and I even miss feeding her slowly, oh how slowly, all day long.

We plan on going to the cemetery that day, because we like the cemetery where she is buried. It's truly a beautiful place and that's why we chose it. That's where 'ol husband and I will be buried (with her in between us, talk amongst yourselves about that) and hopefully not anymore of our children. I'm making the Hummingbird Cake I mentioned earlier this week, it's a southern thang ya'll, and it's delish! It's my Grandma's recipe and all her recipes are finger lickin' good! It does hold some sentimental significance of course, it's main ingredient is mashed bananas, Isabella's most favorite food. That girl wouldn't eat anything solid except mashed bananas. She would eat those with gusto! Sweet thing! So we'll take our cake out there, cry a little I'm sure, have a picnic, eat cake and release all those glorious pink balloons to her (another favorite of hers, she loved balloons!)

I really do want to try and make that day a positive one for us. Her BIRTH was amazing and joyful and nothing can erase that for us. I want to always celebrate that day, because no matter what, I did have her for 14 months. Not nearly long enough, but it's all I got. What else can I do? Except try and hold on to the small and beautiful moments of her life.

I of course am not all positivity, but I'm trying OK? I could go on and on about how I want her here, how I'm more than a little pissed at how this world works and how I keep having daydreams where Isabella is a healthy and vibrant blond haired, blue eyed princess and twirling around at her second birthday. But that wouldn't be healthy now would it?

Like I said, I'm trying. Just for you Husband, you big surly man! I love you honey-sugar-stinky-pants. (that's right, now the world knows!) I have got to, got to, GOT TO be there for my two boys. For my future child(ren) OHMYGOSHDIDIJUSTTYPETHATYESIDID.

The birthday, it is coming and I am waiting. If you are the praying type, keep me in your thoughts and prayers. I hope it's a good day and Oh, while your at it, ask the Big Guy if he could stop all this rain non-sense that is supposedly going to happen on Thursday. I mean, seriously, we deserve a break here!

Love,
Mama

Man I just can't quit writing!

I'm just on a roll or something aren't I? So, as of tonight I am cloth diapering baby rascal aka Rollie Pollie. Why am I doing this? Because I love Mother Earth? (I do, but that's not why) Because I'm a full fledged Hippie? (not exactly, although make up has become a foregone conclusion as of late....babies will do that to a gal) Because I'm poor? YESSSSSS! OK, so I'm not POOR, poor.....but we're feeling that crappy economy and Daddy Rascal is in school at OU and working and I'm NOT working so I can raise these little rascals so that's that. Cloth diapers. OK, so we could totally afford disposables, but I kind of want to try the cloth ones. They're cute, I promise and downright addictive! (Like I need another addiction??) So Husband says I just need to start growing out my arm-pit hair and I'm full blown Hippie Mama.

Oh and I will have pictures veeeery soon of our nice little garden. We are backyard farmers ya'll! We are so tired of paying out the butt for "organic produce" and "organic chicken" and "organic eggs" so we're makin' our own! That's right, we have chickens and fresh eggs and soon fresh ORGANIC veggies! Yum Yum! Of course we're not legally allowed to have these cute little chickies in city limits, so "shhhh!" Don't tell, OK?

Our friendly neighbor this evening suggested we take our chickies POOP (yes, POOP) and throw it in our GARDEN for growing power or something. I just gave Daddy Rascal a look that said "don'teventhinkaboutorillkickyourbutt". Seriously. I don't know if you are familiar with chicken poop but it's NASTY, NASTY, NASTY. I mean all poop is kind of nasty, but chickens have a lot of animals beat. I'm pretty sure anyways.

So I'll post pictures in the coming weeks. First the chickies because they're all set up, and when our garden actually looks like a garden (and not a square box of compost) I'll post those too. I can't wait for that fresh, yummy corn! And watermelon! And green beans! Mmmm Mmmm Mmmm. Now of course, if you are too lazy to grow your own produce (that's right, I called you lazy) go to the Farmer's Market and help out those local farmers! Farming is COOL man!