Wednesday, September 30, 2009
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 =)
Tuesday, September 29, 2009
**At 2:37PM today, September 29th, Brody earned his angel wings and went to be with God.
Monday, September 28, 2009
Saturday, September 26, 2009
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..
Friday, September 25, 2009
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.. ;)
Wednesday, September 23, 2009
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..
Tuesday, September 22, 2009
But that is nothing newWe thought of you yesterday
And will tomorrow, too.
And make no outward show.
For what it meant to lose you
Only those who love you know.
We do it everyday.
It's the heartache of losing you
That will never go away.
Monday, September 21, 2009
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.
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..
Saturday, September 19, 2009
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..
Wednesday, September 16, 2009
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..
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 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..
-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.
Sunday, September 13, 2009
Thursday, September 10, 2009
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
*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..
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.
Monday, September 7, 2009
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.. ;)
Saturday, September 5, 2009
Wednesday, September 2, 2009
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..