Hospice Butterfly Release/ Bereaved Mothers Day

As I post in my last entry I was set to speak with a mom, Meredith, whose daughter Lily passed away from HPE as well.  We had a very nice talk, and she def helped my confidence for when Chris and I decide to try again.  

I was also invited to a lunch and hospice butterfly release by our genetics counselor which was really nice.  The lunch consisted of about 5 other couples who had lost a child or children, and we went around and talked about our babies and what they had.  One couple was pregnant again after loosing their first child, a daughter 11 months prior who had trisomy 13 I believe, which is a chromosomal issue.  I spoke with them and they said she also had HPE but it was due to the T13.  The mom had told me her current pregnancy was going well, and that all though it had been a long 9 months, that is was def worth it.  Which hearing that helped my mind out as well.  Following our lunch we all went to the hospice butterfly release, where Beth, Mallory, Keith, and Zander came over to watch too.  They read Chloe's name along with the other children's names, and the other people who had passed aloud to all of the people there.  At the butterfly release we ended up with 6 butterflies and 4 balloons.  The kids wrote their names on their balloons, Chloe's name, and we wrote "we love you!", once the release started our butterflies didn't leave their cups, and 1 of the monarchs in the boxes flew from the box and landed right on Mallory's leg.    Once all the balloons and butterflies were released, the monarch on Mallory still wouldn't fly away, so Beth and I figured there must be something wrong with its wings.  A lady who was working with hospice came by and told us it was a girl butterfly, and it must be our loved one since it wouldn't leave.  Right before we left we had the kid put it on one of the bushes and right before we walked off the butterfly flew away.  Which then Beth and I looked at each other and started wondering why it never flew away before then, we figured it was Chloe just hanging out with us. 

I also read I believe on Sunday the 5th that it was international bereaved Mother's Day (I think it's the Sunday before Mother's Day).  Which kind of hit home because I haven't really thought this being my Mother's Day.  Chris had asked me the other day what I wanted and honestly I don't know.  I think any parent who's lost a child just wants that child to physically be there with them.  But I also think that moms in situations like ours we just want it acknowledged that we are moms, "Parents aren't determined by the number of kids they have, but the amount of Love they hold in their hearts."  For me personally I want people to talk about Chloe as well and use her name, it helps to keep her here with us.  It is comforting when we hear or read Chloe's name because it's not that we forgotten about her, because she will never be forgotten, but it's that others are remembering her just like we are.  

         Balloon and butterfly release 

 The butterfly that stayed on Mallory's leg

I believe this applies to fathers just as much 

White butterflies

Here lately when I am kind of down, and thinking about Chloe (to be honest I am always thinking of her), I see these little white butterflies. Whether its when I am walking, or driving somewhere, I always see one or two little butterflies fly by or across my path. It got me to thinking, what does a white butterfly mean, and everywhere I looked said basically the same thing, this is what one website had posted:

White Butterfly meaning: the soul of a child, transformation, purity, truth, growth, change, symbol of the soul, sign of angels watching over you, good luck, sign of a good life.

I don't know about anyone else, but I think about things like that, meanings behind things that I continue to see. (Like at my dads funeral we saw one yellow and black butterfly that flew right in front of all of the family, and that was the only butterfly we saw that day.). After reading that it makes me think that it is Chloe almost letting me know that she's here with us. What do y'all think?

I also came across a website, http://www.lilyjanestationery.com/about who is owned by a mom who lost her daughter, Lily, to HPE, you can read Lily's story and more on the website. In Meredith's blog she talks about her children, she has a boy that is older then Lily, and one that is younger, it gives me hope for our next pregnancy. Meredith and I are set to speak via Skype on Friday, and I'm hoping it will calm my nerves a little more. I know I shouldn't freak out because Chris and I have talked and we know that we don't want to try to get pregnant again for a few more months, but I guess the unknown of the future still is nerve racking. I'm pretty sure though next pregnancy I'm not going to be able to relax until after 16 wks, due to the fact that at 16 wks is when we discovered there was something going on with Chloe. I guess that we are "lucky" in that sense if you will, because most parents don't discover HPE or things of that nature until 20 wks of pregnancy.

On another note Chris and my birthdays are coming up, mine on April 18th, and Chris' on May 31st! For me it sure doesn't feel like its almost my birthday lol I guess that happened after you hit the "big" birthdays like 18 and 21. Well I hope everyone has a good rest of the week and I will def be typing more blogs soon!

2 1/2 months

I've been meaning to type up a new blog for a while now, just didn't really know what to type. The past couple months have been trying, some days much better then others. My dad's 4 yr anniversary was on March 6th, which was hard because it's hard to believe its been 4 yrs since he's been gone. Lately I've been replaying how everything with Chloe happened, and it makes me wonder if there was more we could of done. I know the Drs said it was all a "lightening strike", it can happen to anyone, and that we didn't do anything wrong, but it's hard to not think that there was something that I did wrong. I realize how much hope I had that Chloe would of made it to be here with us, even if she would of been special, I had that hope that she would make it. I hear about all these girls having kids, or who already have kids, then you see how they act and how they don't take care about their children at all, and it just makes me wonder why in the world they were even blessed with kids. I know I should think like that, but its hard, I see these people who have health kids, but they speak so nasty to them, go out every single night, and just plain don't care!

Here lately I've kind of had some anxiety about future pregnancies, even though I know that Chris and I aren't going to "try" for a while, I still worry about when that day comes. All of the what-ifs that are all entailed, some days I think "oh yeah I can't wait to get pregnant, and have another baby" but them the majority of days I think "I don't know if I can do it all again. I don't know if I can have another c-section, or risk something else bad happening". I try to be positive, but its difficult, I've spoke with some other women who have been through similar situations, in loosing a child, and they said its normal to feel like this, and that it gets better, but it's hard to see it getting better right now. I guess I've just been in a funky mood due to Chloe's original due date coming up. But my youngest niece did cheer me up the other day, I had picked her up from school, and we were waiting to get her brother when she asked "are you and Chris going to have another baby?" and I told her yes we were but not for a while, and I asked her what she thought we would have, a boy or another girl? Then she told me "I think it'll be another girl and a boy!" lol which made me laugh, cause I've already told Chris we're destined to have 3 children because almost everyone one on our block has had 3 kids, so that means Chloe will more then likely have 2 siblings (maybe 3 o_O lol).

On an ending note for this post, I saw this on pinterest and can relate to it, I wish they had one about Fathers too.

http://stillstandingmag.com/2013/03/the-bereaved-mother-is/

6 wk visit

We went to the Drs yesterday for the 6 wk visit and Dr Martinez said we were doing great, and are role models for others, which is nice to hear! Even though I always say that I'm not that strong, I know that Chris and I are very strong and our love for each other and for Chloe is going to get us through all of this! We know that we gave Chloe the best chance for her to be here with us physically, God just wanted her home sooner then we thought.

I heard something really sweet the other day about my youngest niece Mallory, my sister Mandy had said Mallory's teacher had asked if Chloe had passed because in chapel (she goes to a Christian school) Mallory had said a prayer for Chloe, and said everyday since then she has talked about Chloe. Which I think is so sweet and Mallory said to me "Chloe's Gods baby, she's in heaven with God and Jesus." That just warms my heart, it's so honest and true, and it really shows how pure a child's heart and thoughts are.

As Chris and I were talking yesterday, we were thinking about how many people we have met and who have reached out to us since everything with Chloe happened, and it's really surprised us at how kind others can be. Also how many other families have went through similar situations and have lost a child. It's a very humbling experience to know how many people have been effected or inspired by Chloe's story. Also how great our experience with our Drs have been, I don't think it would of been so easy to get through all of it if it wasn't for Dr Martinez, Dr Fanous and all of their staff. They've all been so great, helpful, and supportive.

Also before I forget, for those who donated for the bracelets, I sent off the donation amount to ABC and we all raised $310. I know some are still donating and once I get those I will be sending off those to them as well! Y'all are amazing!

I also finally got Chloe's foot print and initials tattoo'd by her anchor! Done by Mike at Pachuco Tattoo!

Chloe's memorial

As most know Chloe's memorial service was last Thursday, and let me tell you it was so beautiful.  I want to thank everyone who was able to come and celebrate Chloe's short time with us, and for everything everyone has done for our family.  I will post pictures from the service at the end of the blog for anyone who hasn't seen. Here is a link to her obituary as well: http://www.legacy.com/obituaries/mywesttexas/obituary.aspx?n=chloe-aria-martin&pid=162740595

I'll be honest I was very nervous for the memorial, I just thought that I would just be a mess, but honestly Chris and I did very well, we def cried, but it was a very, very beautiful service. As we were greeting people as they walked in, my friends son came up, gave me a rose, and a little pink hippo, and hugged me, and went and hugged Chris, and I'm sure he knew Chris needed a good hug because he did not let him go. My cousin Kelsey read these 2 poems I had found, which I am so grateful for because I knew I wouldn't of been able to read them that's for sure. My youngest niece, Mallory, decided she wanted to sit with us at the front, and as we walked down to our seats her and I went and put the flowers I had received before the service on the table with the little pink hippo. As Kelsey was reading the poems of course I started to cry, and then I looked to Chris and he was crying too, which made me cry even more! I ended up leaning my head onto his shoulder and he leaned his head onto mine as we were crying, and about that time Mallory looked at us, then leaned over onto me with her head and just sat there. It was so sweet, I guess its true what they say about how kids know when you need that. As the service went on the preacher, Brother Bob, had said even though Chloe wasn't able to physically be here with us, she was a person, not an object, and I believe some people forget that.  Chloe was a baby, she was a person, and no matter how small her little feet where she made a huge impact on every ones life. After the service we did the balloon release, and for everyone there, I honest can't remember everything that I had said right before the release, but I want everyone one to know that I meant what was said, and Chris and I are so grateful for all of you who have been with us through this time, and have supported us. I do remember saying if you have a balloon that you'd like to let go, you can, I said that because I didn't want any of the small kids that didn't want to let their balloon go, let it go. But a friend of ours told me after the balloon release that she has never seen so many small children let go of a balloon before, and none of them cry about it. It was awesome and I know my friends son was saying the balloon was for Chloe, so I feel like they all knew their balloon was going to a really great place, and they were for an amazing little girl.

On a side note, for anyone who had a problem for when Chloe's service was, I feel very sorry for you, you missed out on a very beautiful thing, and I am honestly going to pray for you, it saddens me how selfish some are, and how others thoughts can be. As they say, if it is important to you, you will find a way, if it isn't you will find an excuse. Because of that I let it go, and will not worry myself with others. (How does that saying go? No matter what you do someone will always have an opinion on it.)

Also for anyone who hasn't seen, Chris and I will be mailing off the donations to ABC ministry from Chloe's bracelets on Feb 7th. So far everyone who has donated has helped raised $287! I know some people would like to donate, and that is wonderful, just let Chris or I know, and we can get you our address, or ABC's address.

Here's the poems Kelsey read:

This was a life that hardly begun
no time to find your place in the sun
no time to do all you could have done
but we loved you enough for a lifetime

No time to enjoy the world and its wealth
No time to take life down off the shelf
no time to sing the song of yourself
though you had enough love for a lifetime

Those who live long endure sadness and tears
but you'll never suffer the sorrowing years
no betrayal, no anger
no hatred, no fears
Just love, only love in your lifetime..

_______________________________

­­­­­­You never said you're leaving
You never said goodbye
You were gone before we knew it,
And only God knew why.
A million times we needed you,
A million times we cried.
If love alone could have saved you,
You never would have died.
In life we loved you dearly
In death we love you still
In our heart’s you hold a place,
That nobody could ever fill.
It broke our heart’s to lose you,
But you didn't go alone
For a part of us went with you,
The day God took you home.

Chloe's table, her urn is sitting inside

the flower arrangment.

Oakley giving Chris a hug and not letting go

 

Balloon release, as we've all said it looks like a heart

Chloe finally home where she belongs

Little update

I know I haven't posted lately, but here's what's been going on lately. We went in for our 2 wk visit and my incision looks good and is healing nicely. Of course Dr Martinez talked about the possibility of depression, which is completely expected, but he said he doesn't believe that we will. We also talked about next pregnancy, and he let us know if we wanted to try right away we can, and waiting is completely fine too. In this moment Chris and I have both talked about it and we agree that we want to have another baby sooner then later, but as Chris said its when I'm ready.

I also want to thank all the women who have reached out to me and let me know that you have been through losing a child. It helps me realize that we aren't the only ones going through losing a baby, and seeing that y'all have children after your loss gives me hope. As I've told Chris I know in my heart next time will be better, but I can't help but have those "what if's". I know that we will continuously be watching the sonograms to see if we can see any similarities to Chloe's. As we've said I'm pretty sure we should go become sonogram techs because we know almost everything to look for, and looking back on some of the sonograms right before we found out Chloe's condition and you can tell that the fluid was lower.

Some days have gotten easier, and some
nights too, it's def gotten easier to talk about and as I've told friends I don't mind them asking about how things are, or how were feeling. I want others to talk about Chloe and recognize us as parents, cause we are, we just have a child in heaven. We also got our tattoos we wanted to get for Chloe, we both got anchors for her because she is the one who has held us, and has been our rock to pray to and lean on. When I see others who in my opinion could be better parents to their children I tend to think about life because Chloe has shown us what life is really about, and we look at things so differently now. I feel that if any of those people were to be in our shoes they wouldn't be able to get through it as Chris and I have. Our relationship hasn't only gotten stronger, we've both became such strong individuals as well, and I know that we will be able to get through anything, and we will have our Chloe with us every step of the way. We also received our pictures from the hospital, and I have to say they are so amazing, I'll share a few at the end of this post. For those who haven't seem either Chloe's memorial service is going to be Thurs Jan 31st at 6:30 pm at Ellis funeral home. Thank you to everyone who has read the blog and been with us through this trying journey, y'all have helped more then you know, and we are grateful for you all to be in our lives.

What is holoprosencephaly?

As many have read our Chloe had holoprosencephaly, in this post I want to share something's from a website in hopes for others to understand holoprosencephaly a little better.

Holoprosencephaly (HPE) is a birth defect that occurs during the first few weeks of intrauterine life. HPE is a disorder in which the fetal brain does not grow forward and divide as it is supposed to during early pregnancy (incomplete cleavage of the embryonic forebrain/failure of the prosencephalon to cleave into the cerebral and lateral hemispheres).

There are 4 different forms of HPE, Chloe had the most severe form of HPE called Alobar Holoprosencephaly. Alobar is where the brain is not divided and there are severe abnormalities (there is an absence of the interhemispheric fissure, a single primitive ventricle, fused thalami, and absent third ventricle, olfactory bulbs and tracts and optic tracts).

It is estimated that HPE affects between 1 in 5,000-10,000 live births. Since many pregnancies with a fetus diagnosed with HPE end in miscarriage, the frequency of HPE among all pregnancies may be as high as 1 in 200-250. Current studies indicate that only 3% of all fetuses with HPE survive to delivery and the vast majority of these infants do not survive past the first six months of life. The prognosis for a child diagnosed with HPE depends on the type of HPE and the presence of associated anomalies. It is said that some children with this are born with abnormalities, or facial deformities But our Chloe didn't have any of that, she was perfect, she had mommy's nose, eyes, and as we say the Hart toes, and Daddy's lips, hands, and long legs.

As all of our Drs have told us, HPE has no known cause, and as parents that is the hardest thing to accept. It has been hard to lose our beautiful daughter, but we know that Chloe was given to us for a reason, and we are always going to love her, and her siblings are always going to know her, and know how beautiful she is.

For anyone who would like to read more on HPE here is the website that we've read and got this information from.
http://www.carterdatabase.org/hpe/about/

The silver ribbon is the awareness color for brain disorders.