my darling son...

I feel as though I don't gloat enough on Cayden.. He is the absolute best thing that has ever happened to me. Jay and I were both 19 years old when I had Cayden.. and we loved him from the moment we knew of him.. I get so sick of people excusing bad parenting, by saying "oh they are young" no..that is not an excuse.. anyhow..that is a different post.. Cayden, Jay and I all sort of grew up together.. Cayden is and has always been so funny and so sweet and kind hearted. I will never forget my mom teaching Cayden the 3 little pigs when he was about 2 years old.. she would say a part and C would finish.. his favorite part was the wolf " I will huff and puff and BBBWWWWOOW you house down.." C loves with all of his heart and he is the reason I get out of bed every day.. he makes me smile and laugh, even when no one else can.. he knows just what to say.. Jay and I were obviously so blessed with Ella, but we are equally blessed to have Cayden.. I am so excited to see what God has in store for this little warrior..

I made Ella's montage about a month before she passed and have wanted to do one for C since then.. It took me a little longer since I had to scan some of his in. Also.. the first song is currently his favorite song..I had Michael Bubles "its a wonderful world" and he insisted I change it.you get the drift though..Oh.. I'm not sure how loud it is.. so you may want to have the volume control open..just incase =)

mito...

I hate this disease.. today yet another family is saying good bye to their child.. Sweet Brody has been fighting since he was 2 years old. he is now 8 and on a vent.. he had a stroke and a brain bleed. His family is taking him off and letting him go.. Please pray for peace as he goes, and peace and comfort for the family..

**At 2:37PM today, September 29th, Brody earned his angel wings and went to be with God.

his eyes.. its just not fair...

I keep drifting back to that day, that morning when she let go and flew.. I think about how peaceful it was..I think about the feelings of random panic, wait, bring her back, intubate, I'm not ready.. forget the DNR.. I would feel myself let go, and just get that overwhelming peace all of the sudden..the silent whisper in my ear, reminding me that she is okay, I've got her.. Cayden arrived a little after she passed. He was with his Nana.. they didn't know she was gone yet, the social worker met them in the waiting room.. she talked to him and told him she was gone from this earth..he held his head in his hands and cried.. A little while later he came in to see her..with everyone gone except me and Jay..and strict instructions of no crying.. He walked in and his eyes met mine..I was holding her in a chair..he walked up looked at her and squeezed her hand a little, I told him it did not hurt her, but it could still bruise her.. he ran his fingers through her hair and down her face..then it happened..his eyes met mine and just like that my little boy was gone.. One by one the tears fell down his face and he simply said "she is better now.." Jay and I nodded in agreement, both choking back the tears.. the young hopeful boy was now a serious and realistic young man..in a blink, he changed..his eyes changed..Now and then I see him, the old him, but its a flicker.. I remember always telling my mom when I was younger, this or that isn't fair..she would always say "Jen, life isn't fair.." my whining's were normally pointed at my brothers bothering me, or my parents not letting me go to the movies, nothing of any importance really.. Cayden never says that.. or anything relatively close to that.. I don't have to tell him life isn't fair.. He knows its not.. he knows its not about fairness, its about God's will.. he is only 9 years old..NINE YEARS OLD!! and has been through so much.. he shouldn't know about this kind of loss, this kind of pain..he should still be the happy and hopeful little boy he was.. but he's not..and once again.. I am stuck thinking..its just not fair..

Ella's kitty Mittens..

My mom got a kitten from my brothers family named mittens last year. Ella never paid much attention to animals around her. When she met mittens though, there was an instant connection. Mittens would lay by her and on her, and I'm not sure if it was the purring Mittens did, but Ella loved it.. she would be fussy and we'd put mittens by her and she would hush..Ella would run her fingers through the cats fur as long as we let her and mittens didn't mind at all..it was so very sweet. My mom even got her a long haired stuff kitty in the hospital thinking she would pet it.. she did some, but not nearly as much as mittens..If Ella was at my moms house, she was by her, she would pace when Ella cried and seem very stressed out.. if anyone walked towards Ella when she was sleeping, mittens would quietly meow, as in saying "let her sleep" it was adorable.
This year on Ella's first birthday, mittens had babies.. we were so excited.. mom is keeping one, and we are taking one and another is going to one of my moms friends.. The one we are taking is named Grayson.. he looks just like our cat that died right before Ella was born.. his name was meow and he was my baby for a very long time.. I was so upset when he died.. and one of Ella's kitty's not only looks like him, but acts like he did also.. maybe a gift from my sweet baby.. this is Grayson..(cayden named him, not really sure why that name, but oh well)My mom is keeping the little girl. Her name is Cinder.. we always called Ella, cinderella, so this seemed to fit.. Cinder is sassy and dainty and so prissy.. sound like anyone else we know??
I know it may seem crazy to be so excited about kittens, but its nice to think that maybe these little things were a gift from our girl.. I don't know if she see's down from heaven or is too busy bossing everyone else around, if nothing else, it warms my heart to believe its all more than a coincidence..

I love you sweet baby girl and promise to take care of your kitties..

what a way to start my day...

I woke up, took C to school and decided to check my email while my phone was charging for a few minutes, and this is what I found!


Thank you so much Lea.. this made my day.. so many of the other BLM's are kind and caring and want to do sweet things like the wings, hope collages by fran , and the names in sand by carlie, butterflies from Bree.. just another way to remember my sweet Ella and all of the other angels we're missing.. Thank you ladies so much.. In the mean time, I am trying to think of something I could do too.. maybe take some of that time off of my hands...hmmm.. ;)

interesting site...

I have met several lovely ladies that are treading the same water as we are.. I have seen the term Baby Lost mommas and I think that is appropriate.. Anyhow..reading their blogs and their stories is both inspirational and so heartbreaking at the same time.. I am eventually going to list them on a blog roll.. there are so many.. It is bittersweet to me.. I like being able to feel and know that I am not alone, but it is disheartening to know the reason that brings us together..

Anyhow today I read Mary's blog and saw this site and the verses she had posted and of course had to try it out myself..

Ella's~Proverbs 8:21 -bestowing wealth on those who love me and making their treasuries full.

For so long I worried about having another child because I did not think it was possible to love another like I love Cayden.. I rationalized my not being able to get pregnant for so long as this.. We kept trying though, I knew in my heart that I NEEDED another child.. and from the moment I knew of her, and especially felt her kick the first time, saw her sweet face, I was so enriched just by her presence.. SHE COMPLETED me in every single way... I felt whole for the first time in a long time..so yes this verse absolutely reigns true about my sweet princess..

Caydens~John 3:30-He must become greater; I must become less.

I have no doubt that Cayden is going to be a very godly man..We are guilty of not taking him to church like we should.. when Ella was sick and now that she is gone, I find it hard to be there.. I feel as though people avoid us (that taboo of speaking her name) or the pity eyes..it is my deal, not his.. He loves going to church. . After Ella passed we spoke about being saved alot and what it meant.. We were out with my best friend Erin and he said "Erin, are you saved?" we were both taken aback by his sincerity..He has since asked just about everyone we know.. He's not afraid of the unknown and has complete faith in our lord.. I admire him so much and couldn't be more proud of our little guy. .

Jays~Romans 8:4-...the righteous requirements of the law might be fully met in us, who do not live according to the sinful nature but according to the Spirit.

I love my husband so much for all he is and all he has done for us.. I love his faith and his constant desire to follow our lord. He is better at "letting God" than I am.. I worry and worry and he knows we are not given more than we can handle.. He is a constant reminder of how blessed I am to have a cross bearing husband.. I could not ask for more. .

Mine~1 Corinthians 10:26- for, “The earth is the Lord's, and everything in it.”

**sigh** I know this and have always known this. .and have been so reminded that Ella was HIS and always has been HIS.. All that I have is his and he will do with it as he see's fit..whether it hurts or not.. When she was sick I remember praying to him "SHE IS MINE!! LET ME KEEP HER!!' If its possible to scream during a silent prayer, I did it.. all of the time.. when she passed I am sure I said it out loud.. "you can't have her... I need her..." more than that though..she needed him, it was in his plan for her to be here 8months and 29 days.. she was ready to return home, even though it hurt me, I knew she belonged to him.. my heart has taken a bit more convincing..

Anyhow check the site out and feel free to share what your verse was..

we thought of you today..

We thought of you today,
But that is nothing newWe thought of you yesterday
And will tomorrow, too.

We think of you in silence
And make no outward show.
For what it meant to lose you
Only those who love you know.

Remembering you is easy,
We do it everyday.
It's the heartache of losing you
That will never go away.

~author unknown

mito awareness week is this week!

Many states have 'official' Mitochondrial Disease Awareness weeks - declared as the 3rd week in September to raise awareness for Mitochondrial Diseases.

This event is to spread awareness on Mitochondrial Disease wherever YOU are located. :]


• Every 15 minutes a child is born that will develop mitochondrial disease by age 10.

• It is estimated that of the 4 million children born each year in the United States, up to 4000 develop mitochondrial diseases.

• At least 1 in 200 individuals in the general public have a mitochondrial DNA mutation that may lead to disease.

• There are over 40 identified types of Mitochondrial Diseases and believed to be over 100 variants of mitochondrial diseases, .

• In the United States, more than 50 million adults suffer from diseases in which mitochondrial dysfunction is involved. Mitochondrial dysfunction is found in diseases as diverse as cancer, infertility, diabetes, heart diseases, blindness deafness, kidney disease, liver disease, stroke, migraine, and the toxicity of HIV and other drugs. Mitochondrial dysfunction is also involved in aging and neurodegenerative diseases such as Parkinson and Alzheimer dementia.

• The World Health Organization (WHO) calculates that neurodegenerative diseases, also associated with mitochondrial dysfunction, will become the world's second leading cause of death by the year 2040.

Secret Garden meeting..

I have ran across this blog several times before and just never participated..lurked in at the other grieving parents from time to time.. 3 grieving mothers created the site as a network for others and to share stories and our childrens stories.. One thing I worry about so often is how people seem to have already forgotten about Ella, about her disease, her fight, everything about her.. It seems as though its taboo to talk about her..it gets so quiet often when I mention her name.. I worry about me forgetting about her, not as though I enjoy the pain.. but it keeps me certain..certain that I will never forget her, certain that I still love her as much as I ever have.. I don't want for her to not be a part of the rest of my life, just because she is not here with us today.. I am not sure if any of that makes sense..anyhow.. I want Ella's legacy to be remembered I guess is the short of it.. and taking part in this secret garden meeting is a way for me to talk about her and not worry about the weirdness that may or may not occur..... the subject this time is the nursery.


If you created a bedroom for your baby tell us what it was like.
I had decided very early on if we had a girl I wanted it to be brown and pink.. I know it's everywhere, but all of the girl bedding I liked was brown and pink.. We searched and searched and I fell in love with her bedding when I first saw it on one of the ebay stores.. we ordered it and got to work. Her room was cayden's old spongebob room.. with the blue walls and everything..we used a ton of kilz and finally covered it.. We painted the bottom half (little over half) brown and put in a chair rail and the top is pink. I was given a crib by a friend, that could be a 4 post or a canopy.. We had decided for a while at least to do the canopy, at least until she was old enough to grab and pull on it, then we would take it down.. We worked on it for a long time, until it was perfect.. I wanted all things girly, and no certain theme..it turned out beautiful
Did you have it ready for them before they were born?
Yes, we finished with about 2 weeks to spare, clothes all put away and ready to go..
If so how did you cope coming home to it without your baby?
Ella was not a great sleeper, so we did not use her room for sleeping very often. she slept in a bassinet in our room until she passed.. I would take her in there to rock her or to let her play.. if it was too loud or if she seemed stressed out we would escape in there..
Did you pack it all away?
No, I just cant.. we did put her bassinet, stroller and carseat in there..I went in a few weeks ago and straightened it up again...
What is your baby's room now?
it is still her room.. we go in when we miss her, when our grief is too much..its turned into somewhat of a sanctuary.. other than that we leave the door closed and the light off..
If you are trying to conceive again, or are pregnant again how do you feel about setting up another room before your baby is born? We have talked about this before and I really don't know.. the baby would have to use it, or share with Cayden.. I think if we had another girl, we would change some things around, maybe take out items that were specific to ella..if it were a boy.. I really don't know.. I guess we will just have to wait and see..

below are a few pics.. the pics kind of make the color appear pepto-pink, but you get the jist..

this is the bedding and a few of her hundreds of stuffed animals from family and friends..

free time on my hands....

It seems as though I always have entirely too much time on my hands.. and I can't seem to make myself do anything constructive with it though..blog hop..stare endlessly at the TV even though I am not really even paying attention.. I should not have free time.. I should have a 13month old running around like a mad woman.. how did I get here.. how has it come to this? Monday will be 4 months since she left.. 4 months without my daughter.. 4 months longer than I ever imagined that I would "make it through" ...barely making it, but making in none the less..

Ella's 1st Birthday...

This years birthday was a lot different than I would have ever expected 1 year ago when she was born.. We celebrated her life by delivering flowers and gifts to the childrens hospital and later we had a balloon release grave side.. When we arrived to the hospital I wasn't sure I would be able to go in.. I felt so so awful.. we had not been there since she passed.. it was so hard to be there without her. .I kept reminding myself that this was for Ella.. anyway, thanks to everyone that came out and sent well wishes.. here are a few pics..

Cayden & Ninny..I'm not sure what was going on here, but this picture was so sweet..
I had to share!

There were so many beautiful flowers and decorations on her grave..

Off they go! We hope you enjoyed your birthday balloons princess!

I'm not sure who wrote this poem, but I thought it was cute.. I read it at the balloon release..

It's my first birthday in heaven,
what a joy to partake.
My presents are flowers and rainbows
and angel food cake.

My crib is decorated with roses
and glitter.
And the stars that shine upon me
make everything shimmer.

The other angels are dancing and
singing me songs.
Soon Jesus will be joining me,
It won't be long.

We'll all gather and pray
for my loved ones on earth,
Who love me so much,
from the day of my birth.

You see, Birthdays in Heaven
are full of happiness and cheer.
We celebrate with our loved ones,
who proceeded us here.

Yes, Birthdays in Heaven
are wonderful and gay.
One day we will celebrate together,
for that moment, Mommy and Daddy, I pray,

Lastly, the below pic is of Erin, me, and Mandi.. they have been there for me so much lately..I am honestly not sure where I would be without them.. They were not afraid to come around when Ella was sick, they would hold her and talk to her and she loved them very much.. Since her passing, they have been the best friends I could ask for.. Friendships have been tested a lot lately, some passed and some failed and some are up in the air..these two are the reason that I am not locked away somewhere in a padded room.. I love you girls so much and am certain God placed you in my life so long ago, because he knew that I would need you now..

advice from a grieving parent..

I've read this little tidbit on several blogs and thought I would share..so many people often avoid me or just straight up ignore me because they don't know what to say, and I've been there, not knowing what to say, but PLEASE don't ignore me and please don't act as though she never existed..that kills me when people shutter at the sound of her name..I have to talk about her..I have to remember her and I need for those that care about us, to do the same...anyway..some of this applies to us and some doesnt.. we had her for almost 9 months.. she wasn't a stillborn or a miscarriage, but the rest is pretty spot on. . I may edit some in red of my personal thoughts or clarifications..

-Don't say, "It's God's Will." Even if we are members of the same congregation, unless you are a cleric and I am seeking your spiritual counseling, please don't presume to tell me what God wants for me. Besides, many terrible things are God's Will, that doesn't make them less terrible.

-Don't say, "It was for the best - there was probably something wrong with your baby." The fact that something was wrong with the baby is what is making me so sad. My poor baby never had a chance. Please don't try to comfort me by pointing that out.

-Don't say, "You can always have another one." This baby was never disposable. If had been given the choice between losing this child or stabbing my eye out with a fork, I would have said, "Where's the fork?" I would have died for this baby, just as you would die for your children. If Jay and I have another child naturally there is a 25% chance that it too will have the same thing..odds that may sound not so bad, but its a big decision for us for when we are ready and what approach we will do to increase our odds and have a healthy baby..

-Don't say, "Thank God you lost the baby before you really loved it." I loved my son. Whether I lost the baby after two weeks of pregnancy or just after birth, I loved him.

-Don't say, "Isn't it time you got over this and moved on?" It's not something I enjoy, being grief-stricken. I wish it had never happened. But it did and it's a part of me forever. The grief will ease on its own timeline, not mine - or yours.

-Don't say, "Now you have an angel watching over you." I didn't want him to be my angel. I wanted him to bury me in my old age.

-Don't say, "I understand how you feel." Unless you've lost a child, you really don't understand how I feel. And even if you have lost a child, everyone experiences grief differently.

-Don't tell me horror stories of your neighbor or cousin or mother who had it worse. The last thing I need to hear right now is that it is possible to have this happen six times, or that I could carry until two days before my due-date and labor 20 hours for a dead baby. These stories frighten and horrify me and leave me up at night weeping in despair. Even if they have a happy ending, do not share these stories with me. This is a biggy for me...

-Don't pretend it didn't happen and don't change the subject when I bring it up. If I say, "Before the baby died..." or "when I was pregnant..." don't get scared. If I'm talking about it, it means I want to. Let me. Pretending it didn't happen will only make me feel utterly alone. He may have been a stillborn, but he was Still Born. Again, she wasnt still born and so many people got to know and love her...even though she was an infant, I loved her as much as I have ever loved Cayden..

- Don't say, "It's not your fault." It may not have been my fault, but it was my responsibility and I failed. The fact that I never stood a chance of succeeding only makes me feel worse. This tiny little being depended upon me to bring him safely into the world and I couldn't do it. I was supposed to care for him for a lifetime, but I couldn't even give him a childhood. I am so angry at my body you just can't imagine. We had no idea we were carriers, I would have never tried for 4 years to have a baby with the 25% chance we would lose her, or have her suffer while she was here..

-Don't call more than once and don't be angry if the machine is on and I don't return your call. If we're close friends and I am not responding to your attempts to help me, please don't resent that, either. Help me by not needing anything from me for a while. If you're my boss or my co-worker:

-Do recognize that I have suffered a death in my family - not a medical condition.

-Do say, "I am so sorry." That's enough. You don't need to be eloquent. Say it and mean it and it will matter.

-Do say, "You're going to be wonderful parents some day," or "You're wonderful parents and that baby was lucky to have you." We both need to hear that.

-Do say, "I have lighted a candle for your baby," or "I have said a prayer for your baby."

-Do send flowers or a kind note - every one I receive makes me feel as though my baby was loved. Don't resent it if I don't respond.

-Do recognize that in addition to the physical after effects I may experience, I'm going to be grieving for quite some time. Please treat me as you would any person who has endured the tragic death of a loved one - I need time and space.

-Do understand if I do not attend baby showers/christening/birthday parties etc. And DON'T ask why I can't come. this one is rough for me..if I am not invited I will feel somewhat left out because of what happened..I dunno..maybe invite and don't be upset if its too much on that day.. much of what I do is determined day to day, how I feel at that moment when I am meant to walk out of the door..

Above all, please remember that this is the worst thing that ever happened to me. The word "miscarriage" and "stillbirth" are small and easy. But my baby's death is monolithic and awful. It's going to take me a while to figure out how to live with it. Bear with me.

The door keeper

A small child comes to our home to visit, all of the doors are open..all except one..the first door on the left.. the small child opens the door a tad, just to peek in. Immediately the door keeper closes it and says abruptly to the child "We don't go in there" the door keeper, a mere 9 years old, shuffles the child down the hall being questioned the entire time on why they cannot go just look.. The door keeper finally gives in by simply stating "Its my sisters room".. "Oh" says the child and that is the end of the conversation.. Although what the door keeper doesn't know is that once in a while I catch the door keeper opening the first door on the left, he peeks in, looks around for a while, never once crossing the carpet into the room..he closes the door, keeping his hand on the knob for just a few seconds extra before walking away..I can only imagine what the keeper envisions when he surveys the room..perhaps he is imagining a small toddler playing with her toys, barely able to walk..she smiles when she see's him..she loved him so much.. the door keeper closes the door and walks to his door, he spends a little time alone while sitting on his bed deep in thought..missing her so much, but he barely speaks of her at all.. what an awful job this door keeper has assigned himself to do..a mere 9 years old, so somber..all over 1 door..the first door on the left..

dummy guide to losing a child...

I've been thinking lately about that someone should write a book about how to lose a child..a dummy manual if you will.. I know there are a TON of books about loss, about the correct way to grieve about what to expect.. We knew we were going to lose her, I had no idea one little tiny human could tear me into a million pieces and at times seem un-repairable..we are almost 4 months out..and sometimes I am "fine" dare I even say good..but sometimes I just want answers..I want someone to tell my why, and someone to tell me that my crazy irrational thoughts are normal..some one needs to write a book that is NOT all rainbows and bubble gum.. a real book.. a book for REAL parents with REAL suffering..

maybe it should start like this...

after the loss of a child you may experience the following:

*sleepless nights staring at the ceiling and praying for the pain to ease
*stomach in constant state on twisting and turning..
*staring at children that are around your childs age... and not being able to look away..even though it kills you inside.. especially ones with little bows..
*numbness to everything.. not caring about things going on around you.. the need to stay in bed all day, even though all you do is think about her.. don't get up, because it will be real..
*weeping til you think your face is quite possibly going to just fall off and your heart is just barely able to keep up..not just crying, full on weeping..the same weeping and pain I felt on the day we lost her. Mr Webster defines to weep as 1 : to express deep sorrow for usually by shedding tears..I say Mr Webster never lost a child..its so much more..

maybe it should say something about the possible triggers of emotion that may follow the loss of a child,

*seeing and watching children their (should be) age
*children older &/or younger
*baby items @ the store
*Rainy days
*Sunny days
*birds, butterflies, flowers
*when people ask how I am doing
*when people don't, in fear that I will lose it..
*the sickening urge to buy her a little dress..even though you know she is gone..and so you talk yourself out of it, and feel like you have been defeated..

what may make you feel a little better about the defeat..

his word... his promises.. his love for us..

Jeremiah 29:11
For I know the plans I have for you,” declares the LORD , “plans to prosper you and not to harm you, plans to give you hope and a future.

a few new pics

Sunday afternoon I found myself bored, and nothing much to do around the house. So I called my sister N law Jessica and asked if she wanted to take a few pics of C and the kiddos.. 1st we went to Washington elementary.. my brother and I both went to 4th and 5th grade there. It has since been closed and a brand new school is up.. I am by no means a photographer, but it was fun to take them and edit them.. My parents have the 3 grandkids here and of course Ella up in heaven.. and so far, no babies from my baby brother... and better not be for a while.. ;)

what the ???

when is enough, enough? The duggars are having ANOTHER baby..yep..this will be 19.. not to bash them or anything, It seems as though they are good enough parents, but man.. I read all of these blogs of other families, and Jay and myself having struggled with infertility in the past..why can they have 19 healthy babies? I do have Cayden and am thankful for him, alot of people don't even have the 1.. or cant.. and they have 19!!! this just makes me jealous and even a little angry..

crying for colic...

If there was a way to go back, to this time last year.. colicky and crying a majority of the time, I would do it..I would do it and hit pause..
I would listen to the crying and handle being up all night just holding you.. I would do it.. and I would savor it..
I would marinate my brain in the sound of your voice.. I would smell that sweet baby smell and look into your eyes and talk and comfort you.. and not complain, or think of how "I can't wait til she is a little bit older."
The time before Mito, time before feeding tubes and adult strength meds to sedate your tiny body to prevent you from having seizures..
the time before my heart hit the floor and has since been kicked and stomped on leaving this huge gaping wound in my core,
all the while..trying to be okay, trying to seem okay so I don't get those pity eyes that I have grown to despise..
when people across the room are talking about me and then I see it..
the moment they hear "her daughter died" I see it..that look.. and I pretend I don't..
pretend to be looking at something else..kick the heart a little more..
its still pumping.. its not the peoples fault,
they don't know it kills me more each time I get it..
when I am asked about how many children I have.. I am trying out what feels "right" to me..ways to avoid that look while still including my daughter..
I still have 2 children.. and when I tell them I have a son who is 9 and a daughter who is healed and now in heaven,
crap..there is that look again.. Get over it.. I know.. I KNOW.. I KNOW!!
I can't leave her out.. I can't just not mention her..
I've tried it and I immediately want to jump back in later..
Wait, I lied..I have 2 children..not 1..
I can't pretend the last year never happened.. I just can't..
So I will smile and try to deal with the looks..pretending I don't see them..
imagining I could rewind to the time before my whole freaking world was rocked upside down..
before mito..

just noticed this is right above the last blog about jealousy, anger and worry.. as I said.. I am working on it.. today is not going to be the day I overcome it..obviously..