Thursday, September 30, 2010

wow..this woman is amazing..

So I saw this on my friends facebook page and absolutely had to share..Remember this post when I talked about what I feel strongly about? Well this is my blog and I am sharing something I feel strongly about.. 7.5 months pregnant and her mother was going to abort..30 weeks is that not considered murder? It baffles me, when so many of us our here would do anything to have a 30 week pregnancy and end with a healthy baby..and so many just get thrown away like yesterdays garbage..its so heartbreaking.. I am very much prolife and I do not apologize for this, care to get into a debate, thoughts..I try not to shove my political views down my readers throats, but this is an issue that needs to be addressed..I have mentioned it before in my blog if you want more on my thoughts about abortion..

Luke 12:7

But even the very hairs of your head are all numbered. Fear not therefore: ye are of more value than many sparrows.

Monday, September 27, 2010

comfortable crisis..

Does anyone else seem to feel some sort of strange comfort during crisis? I know its a strange question, but I am honestly curious. Most see a baby hooked  up to wires and tubing and it scares them, takes them back and they are scared to even touch them.. today I held a tiny little girl, all hooked up and in the NICU, and instead of anxiety, I was covered in peace, like this felt natural to me..I felt comfortable talking about scary things with her nurse, asking questions most would never ask..I felt like I could sit and hold this sweet tiny baby all day long..On my way home I was thinking about 2 years ago, I would have never even attempted to hold her, I would be the one in the corner, afraid that I would break her.. I am so grateful for the healthy baby we have here with us, I love seeing her sit up, roll over, play with toys and our cell phones(dont ask)..and I will NEVER EVER wish a baby ill, but for a minute or two, I missed that. I miss the sounds of an 02 machine, monitors, the sounds of nurses and people in the hallway..I don't know if its all of that, or if its when I am in that surrounding I feel closer to her..I want this perfect little family, with a perfect little life, but what if we were meant to help out a sick baby, what if Ella's illness was to prepare us for what was ahead..maybe one day we will be in a position to help a sick baby..We would have never imagined we would be where we are now, but its our life..we will never have our happily ever after, I certainly realize this..but what if it is a different version, happily ever after 2.0? what if we help a sick baby get BETTER, and get to watch her grow and become the person she may have never become, if we had never decided to take a sick child...just a thought....I know I will never in my life regret this little sick baby..she made me who I am today..

btw as far as I know little miss is staying put for now. Her parents have court the 5th of October, so we will see what happens..I would jump at the chance to keep her forever..We love her to bits and pieces..this is just me thinking "out loud" I guess :)

Tuesday, September 21, 2010

did you know??

Did you know that 80% of children diagnosed with Mitochondrial Disease before the age of 5 will not survive to see 20 years of age? If it was your child, would this statistic be acceptable to you?
(the average life expectancy for the exact type Ella had is 9 months)
Did you know that, Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10.  Each year, 1000 to 4000 children in the United states are born with a mitochondrial disease.   While exact numbers of children and adults suffering from mitochondrial disease are hard to determine because so many people who suffer from mitochondrial disease are frequently misdiagnosed, we now know the disease is approaching the frequency of childhood cancers.  Many are misdiagnosed with atypical cerebral palsy, various seizure disorders, childhood diseases and diseases of aging.  Still others aren't diagnosed until after death.  

Did you know that the parts of the body that need the most energy, such as the heart, brain, muscles and lungs, are the most affected by mitochondrial disease. The affected individual may have strokes, seizures, gastro-intestinal problems, swallowing difficulties, blindness, ...deafness, heart and kidney problems, muscle ...failure, heat/cold intolerance, diabetes, immune issues, and liver disease.

Did you know that mitochondrial dysfunction is connected to common diseases such as alzheimers, parkinsons and autism spectrum disorders?

Did you know that mitochondrial diseases are not as rare as you may think? 1 in 200 people carry a mutation that may develop into a mitochondrial disease.

Did you know that there are currently no treatments, cures or anyway to help one with mito? vitamin treatments to try and help restore some energy is all there is. There are many studies out there, and I believe there is a study out there that will work as a cure, but there is just simply not enough instead children and adults are suffering daily. We have treatments and cures for Erectile dysfunction, hair loss, acne, and so many more minor ailments, and not one for this disease..

Did you know there are many ways to give, funds that will actually go directly to research and raising on the link on my sidebar for Ella's research fund, or go here and print to mail in the form, or book mark the page and donate..

can't decide if you should donate or not? even if its just a one time donation of $5.00 it is help and we appreciate it so very much.. and so do each and every single one of these faces..

Thursday, September 16, 2010

changing of seasons...

I was just over at their page and have decided to participate in faces of loss, faces of hope's september writing challenge. The topic this month is simple~How has the changing of seasons (from summer to fall) impacted you in your grief journey?

*Fall for me is Ella, the smell of autumn air takes me back to her without even thinking about it. I close my eyes and I am back in Fall 2008. She was born Aug. 21st  2008. The breeze cooled and the colors on the trees and grass went from green to orange, brown and red. I would open the windows and turn on the attic fan and we would play, dance, snuggle and enjoy our time together all day. Jay was at work and Cayden was at school, it was just us. It was heaven on Earth. I'd hold her when she would nap and just sit and watch her sleep.. I would tell myself to take it in, because they get big so fast..or so I thought.. Autumn was our time of bliss, of ignorant bliss.. 

Once Winter arrived is when our Hell began..Even now, 2 years later, I can imagine her, the smell of the fresh air on her head, I can see her watching the leaves fall through our back door, I would be at the computer working and she would be in her bouncer staring outside..she loved it..Last fall I was still in a fog, it was so surreal, I could barely wrap my head around the fact that she was gone. This year, I feel it creeping up on me, her birthday, the cooler weather, the change of colors, it seems to make me long more for her, if that is possible. I miss her and I am sad, but it makes the urge to go back to that time even stronger. I put up our fall decorations ridiculously early this year, I ordered my fall scented scentsy, I want to go back to then..or to feel like I did at that time..I think back to picking out her halloween costume, my little bat girl..I think of what we would be picking out for her this year. She would be old enough to really get whats going on, to eat the candy..
I know I've said it a million times before, but it seems like it was yesterday, and a lifetime ago all at once. Fall has always been my favorite season, but now, I have a reason to love fall even reminds me of the last time we had full and complete joy...

Monday, September 13, 2010

Lord, fill this coat...

December 26, 2008, Jay and I went shopping with his mom. We returned a few things, spent some gift cards, grabbed lunch, all with our healthy beautiful baby girl in tow. She loved to shop, to be pushed in the stroller, she'd just watch everyone and enjoyed the change of scenery as well as the strangers doting over how perfect she was. We had no clue at that time what was going on inside of her tiny body, we had no clue that just a few days later, we'd be sitting in the PICU praying for God to spare her life.. While in one of the stores we spotted this, and Nancy wanted to get it for her, even though it was big at the time, she could wear it in a few here we are fall, a few months will turn to winter, and guess who is not here to wear her coat? When I hang up Little Miss's clothes in the closet, this always catches my eye..
 I can close my eyes and imagine her wearing this to church. I can imagine the black tights and black shiny shoes on her feet, a black hat to keep her sweet little head warm and gloves for her precious hands.
24 months, she would be 24 months now, she would have looked like a little model and I am certain she would have worn it for our 2010 Christmas cards. Most of the time I imagine her as a 9 month old baby, but occasionally I can think of her older, her 'adjusted' age. I wonder what she would look like, what she would sound like, would she be loud or shy? Would she be talking well? potty training? My heart aches to know these things, I wish I knew someone who could sketch a pic of her adjusted age, like they do for the children who are missing and abducted..I wish I could see her one more time. a glimpse.

I am praying that next winter Little miss is ours and we can put her in this coat for our 2011 Christmas cards, that I can post them, because she will be ours and no longer 'foster'..that is our prayer anyway..Lord, let us have a little girl long enough to be a toddler, long enough to fill this coat....

Tuesday, September 7, 2010

to meet one's needs...

My fear when we began our journey to foster and adoption was simple. What if I can't bond with children that are not from my body. What if we were to adopt a baby, and there was nothing love, no feelings, just empty.I am a firm believer that in order to provide more than basic needs, there has to be a bond, an attachement, a bond. The reason we decided to foster to adopt, or attempt to, is because we needed to help those in need. Not that adoption from agencies isn't wonderful, because it is. But what about these kids, the ones who have been abused, neglected, and everything else you can think of. Who wants them? Who wants the 'other than perfect' baby to take care of forever? The baby who doesn't trust strangers, loud noises, the ones who startle easy..what about them? who wants them? Can we handle taking on a child who's background is already so shaded at such a young age. What if we can't look past this and get that attachment. What if they aren't perfectly shaped, colored, healthy or happy, what will we do? Can we love them as our own? Can we meet more than their basic needs?
Yes, yes we can. Never in my life would I imagine that the problem was not loving enough, but too much.. That attachement is there instantly. They need us, She needs us, Little Miss smiles when we glance at her. She jumps and hugs our necks when we pick her up. She is only 5 months old and is in need of more than her basic needs. She needs so much more, snuggles, laughs, a peaceful home, people who dote over her pig tails and tell her how cute she is.. She NEEDS us and I am oh so happy to be able to give her an abundance. I hold her too much, I know this. She never cries more than a few minutes, waiting on that bottle..I can handle that, its not seizures that terrify her and all I can do is hold her and cry, its not the blood being drawn, the IV's being placed all over her tiny body, again while all I can do is sit by and do nothing..its a need that I can fill. I can hold her and rock her to sleep, I can warm her bottle a little even though she'll take it room temp, I can play 'super baby' with her until my arms are numb. Its a need for her, but its also a need for me. When Ella got sick there towards the end, I could only hold her on a pillow for a very short time before she would become so sore. Even when she was here, all I wanted was to hold her against me, to feel her breathe, and I couldn't..I wanted to help her, to hold her, for me to meet her needs was impossible..No baby will ever replace Ella, whether its from my body or not.. but I do have to believe that the huge gaping whole left in my chest can be filled a little, by meeting both of our needs..
I love this baby, I love Sweet pea, I can't imagine what its like to absolutely not travel to the end of the Earth and back for your kids. Its sad, but I am so grateful that we have been blessed with the position to help the ones we can. We have the room, the stuff, the time, and more than that the love, an abundance of it. Praise the Lord for that..

We are waiting to hear if Little Miss's aunt is approved to take kinship or not. I am assuming she will be approved, and praying she isn't (for our sake), but I will post as soon as I hear anything..
Isn't she lovely?!

Her worker just called and said the aunt and uncle are most likely going to be denied because of some questionable history on one of them.  She did say the parents requested visitation, so we will see when that is. I guess even though they are terminating rights, they still have to offer it until its official.. soo for now we get to keep her. I am worried once the rights are terminated and she is adoptable that people will come out of the woodwork for her..We just have to put it all in Gods hands and trust that he will take care of her and us as a family..

okay and just because I am feeling froggy here is one peek of little miss! She just turned 5 months old last week and is almost sitting by herself! *she does for a minute or 2 before she tips, but so good!*

Thursday, September 2, 2010

so close, but soo far...

Last week we picked up a new little girl, 5 months old and absolutely darling. Her parents had some past issues with child welfare, lost their rights to 3 children and apparently had her under an alias name so they wouldn't take her too. Well they were found out after they apparently tried to kill eachother during a huge 'domestic dispute.'  They of course showed up to court without a lawyer, so they go back in October to most likely have their rights terminated. We were told right off the bat that it was very likely she would be up for adoption, several different times actually..The family did not step up for the other 3, so it was assumed they would not for her.. So I did it, I let my gaurd down and absolutely fell in love..The worker called me after her parents court and told me it would be continued later, but that she had some news. My heart sank and I knew.. she said an aunt came to court and is requesting gaurdianship..they are doing a home inspection and background check and will get back to me. I know its wrong, but I am praying she is denied. For my sake sure, because she already acts like one of us, but more for her sake..for her well being.. I feel like once again we were so close, and now are so far again...I know we are not going to keep every single child, but I really had a strong attachment and feeling that she was the one. Sweet Pea is doing beautifully with her Nana, and I talk to them every few days and we are even keeping her when they attend resource classes. I am not so naive to think that every time a child moves on that such a relationship will exist with the new caretaker. I can extend my information and willingness to help, but they do not have to accept. So for now we wait..I feel absolutely helpless. I've cried and been angry and all sorts of different emotions. The grief is different but kind of the same too..I look at her and pray she is still with us tomorrow night, much like I did Ella for so many afraid to sleep and wake up to find her gone..different but kind of the same. .

I have also had some other things on my mind lately, weighing heavy. It seems sometimes as though this storm is never going to pass. I asked my mom the other day if she thought we just weren't meant to be happy!?  Seems like we are so close and it all falls away. I am really trying to know and trust that one day we will be blessed. We have no idea what's in store for us, but we are ready for something good for once.  Cayden unfortunately is old enough now that it is sometimes hard to hide whats going on, he over hears conversation and will always put in his 2 cents. He is so very smart and very intuitive.. The other day when I picked him up after the worker called, he asked why I was crying. I told him I hadn't been (in an hour or so at least) and he simply stated "I don't know why you don't just tell me why" umm..when did you turn into an adult?? I just told him that I had a moment and was better now that I prayed for peace..'oh, about Ella then' and that was the end..yes, I guess in a way its about her..Its always about some way, shape or form.. We've not told him about the baby possibly leaving yet, we don't want him to worry about it if it doesn't happen. He loves her already, he knows we can't keep all of them too, but he sure would like to.. ((sigh)) so would I...
   anyhow, sorry to be absent so long and then come back with a big ol' whine fest.. I promise to work on a positive and upbeat post very soon.. and to catch up on my blog reading/stalking, seems as though my pc is somewhat working again..**cross my fingers and toes!**

here is a little sneak peak of sweet girl, I have so many good pics I wish I could share.. maybe one day..((praying))