Baby girl,
Had a tough couple of days...and I'm tired.
But I wanted to let you know that the campaign was approved by the VA-AAP, through their first phase of voting. Was told that their second & final phase will be the end of April but she doesn't see a problem with it going through. :)
They were all in agreement that this is an important cause.
There are currently 6 other states that are pending their final votes through their own chapters. It's looking to be a successful campaign & will most likely go nationwide. I have considered volunteering to be a parent advocate for Maryland and D.C. I talked to it with Debbie & she of course offered to help...
I needed to hear this good news my mouse. As usual...during the times I need it the most, when I'm in the midst of the darkness...the universe (God) shines a light even in the dimmest form to let me know I'm not alone & not forgotten. That there may be a purpose to all of this after all.
I guess that's the meaning of faith, which I'm trying to hang on to my little girl.
Ayde showed me this video yesterday and I was able to download it.
This is you.
My beautiful happy girl loving her baby...always carrying one on her hip. <3
This is how I will always remember you...
https://youtu.be/ewYEclW2Gng
I love & miss you, with every breath I take.
Forever your mommy.
Friday, March 31, 2017
Wednesday, March 29, 2017
~
 |
| Still feel like in a fog most days. |
 |
| Missing you always. |
 |
| My sweet beautiful girl. <3 This was taken by Papi on a trip to DC to see the cherry blossoms. He had you girls climb up on the trees...so many memories. So much love. |
Sunday, March 26, 2017
Richmond
My dear baby girl,
Today was another typical Sunday, except for the fact that Sissy started her new job. :)
We went to tell you all about it at the gardens yesterday. She wasn't supposed to start training until next week, but they called her to start today instead.
I still can't believe it my mouse. It's hard to believe that just yesterday she was my little churquis...running around with her bushy curly headed pig tails & now she's got a job & will be driving on her own soon.
I think it will be good for her baby girl. In the beginning of the school year, I tried to encourage her to get more involved in after-school activities. But she doesn't like sports & even though she did chorus in the past she didn't want to continue (she said no one likes the chorus teacher) & although she loves music she has no interest in playing any instruments (we tried with piano lessons for about 6 months)...
I know the AP classes she takes are hard. I know she has to get up so early in the morning...when she gets home she's tired. I know it's been a hard couple of years. I'm always proud of her, but I worry too.
My hope is that this will be a good learning experience for her & she'll get to earn & save some money of her own. That it will give her a new sense of accomplishment.
I know she will do just fine. She's already been responsible with her applications & getting the interview & the job, worried about her work outfits, etc. Most importantly, she's excited & happy.
...
I don't forget about Sissy or Bella my mouse. Just because I think about you everyday...doesn't mean I forget them.
They don't forget about you either.
Friday, Sissy & I got up at 4:30 am & headed to Richmond. We got to the hotel ok & our table was ready to set up our booth. BTO sent me all the posters & even a table cloth last week. The only thing I had to do was make a poster board (which they told me about last minute so it was a little plain).
There were many organizations & booths, representing many causes.
Our table was just across the refreshments table, so right away there was a good flow of nurses that stopped to look & we talked to- even before the conference started.
If you notice, we brought your framed picture & placed it next to the poster board. It's the same one I keep on my night stand. The same one I say goodnight to every night.
I showed them your picture my mouse. I told them our story. I introduced them to Sissy. There was a lot of compassion & shock, to hear of how we lost you. A lot of admiration that we made it our personal cause to spread awareness.
Sissy & I agreed that if we had just been standing there, with the flyers & not told them about you- that it wouldn't of had the same impact. Our story made a difference baby girl. They took posters, said they would put them up in their clinics & share them with parents.
One nurse said she'd bring it up during the conference with the doctors.
There was a Hispanic nurse who gave us hugs- speaking in Spanish she told us to look to God when we need strength. That we will need him, just as we still need & miss you. To not forget. She also asked if I'd be interested in making a speech at her school. I gave her my info...
I can't remember what part of VA she was from, but there were school nurses from all over.
All were nice & sincere in their concern.
We did good my mouse.
I'm so glad I got to do this with Sissy.
...
We didn't stay all day. We were tired & had a long ride back, so we left the remaining posters & poster board. Their board meeting to decide on the campaign launch/mailing list was yesterday. We will hope for the best baby girl.
It is still hard to believe my girl. Even as I stood there, repeating our story to strangers, with tears welling up in my eyes...
It was as if I was telling them somebody else's story. Someone else's sad tragedy.
Even with everything that's happened & that we've gone through.
Even 2 years later.
It's still hard to believe. I still don't want to believe.
I still can't believe...
You were once here, earthbound & now you are not.
...
We will try to continue & channel our grief into something good baby girl.
Because your light still shines bright & it guides us. As long as it still shines, we will always follow it. <3
Forever,
Your mommy
Today was another typical Sunday, except for the fact that Sissy started her new job. :)
We went to tell you all about it at the gardens yesterday. She wasn't supposed to start training until next week, but they called her to start today instead.
I still can't believe it my mouse. It's hard to believe that just yesterday she was my little churquis...running around with her bushy curly headed pig tails & now she's got a job & will be driving on her own soon.
I think it will be good for her baby girl. In the beginning of the school year, I tried to encourage her to get more involved in after-school activities. But she doesn't like sports & even though she did chorus in the past she didn't want to continue (she said no one likes the chorus teacher) & although she loves music she has no interest in playing any instruments (we tried with piano lessons for about 6 months)...
I know the AP classes she takes are hard. I know she has to get up so early in the morning...when she gets home she's tired. I know it's been a hard couple of years. I'm always proud of her, but I worry too.
My hope is that this will be a good learning experience for her & she'll get to earn & save some money of her own. That it will give her a new sense of accomplishment.
I know she will do just fine. She's already been responsible with her applications & getting the interview & the job, worried about her work outfits, etc. Most importantly, she's excited & happy.
...
I don't forget about Sissy or Bella my mouse. Just because I think about you everyday...doesn't mean I forget them.
They don't forget about you either.
Friday, Sissy & I got up at 4:30 am & headed to Richmond. We got to the hotel ok & our table was ready to set up our booth. BTO sent me all the posters & even a table cloth last week. The only thing I had to do was make a poster board (which they told me about last minute so it was a little plain).
There were many organizations & booths, representing many causes.
Our table was just across the refreshments table, so right away there was a good flow of nurses that stopped to look & we talked to- even before the conference started.
If you notice, we brought your framed picture & placed it next to the poster board. It's the same one I keep on my night stand. The same one I say goodnight to every night.
I showed them your picture my mouse. I told them our story. I introduced them to Sissy. There was a lot of compassion & shock, to hear of how we lost you. A lot of admiration that we made it our personal cause to spread awareness.
Sissy & I agreed that if we had just been standing there, with the flyers & not told them about you- that it wouldn't of had the same impact. Our story made a difference baby girl. They took posters, said they would put them up in their clinics & share them with parents.
One nurse said she'd bring it up during the conference with the doctors.
There was a Hispanic nurse who gave us hugs- speaking in Spanish she told us to look to God when we need strength. That we will need him, just as we still need & miss you. To not forget. She also asked if I'd be interested in making a speech at her school. I gave her my info...
I can't remember what part of VA she was from, but there were school nurses from all over.
All were nice & sincere in their concern.
We did good my mouse.
I'm so glad I got to do this with Sissy.
...
We didn't stay all day. We were tired & had a long ride back, so we left the remaining posters & poster board. Their board meeting to decide on the campaign launch/mailing list was yesterday. We will hope for the best baby girl.
It is still hard to believe my girl. Even as I stood there, repeating our story to strangers, with tears welling up in my eyes...
It was as if I was telling them somebody else's story. Someone else's sad tragedy.
Even with everything that's happened & that we've gone through.
Even 2 years later.
It's still hard to believe. I still don't want to believe.
I still can't believe...
You were once here, earthbound & now you are not.
...
We will try to continue & channel our grief into something good baby girl.
Because your light still shines bright & it guides us. As long as it still shines, we will always follow it. <3
Forever,
Your mommy
Saturday, March 25, 2017
Thursday, March 23, 2017
Rabbit Hole
My Dear Hailey,
Sometimes I just need to say your name....to read it or say it out loud. To know that you are real & that you once existed....that you still exist in, just in a different way.
I had a call the other day for a little girl of 11 yrs old with your name- spelled the same way. I don't even remember what the call was about. I just remember staring at your name & at first feeling reluctant, because I didn't know what kind of feelings it would provoke.
First it triggered the memory of my first anxiety attack at work, after taking a similar call.
But then something happened, something changed. I was able to get those thoughts out of my head & suddenly a calm came over me. Seeing your name almost made me smile. As if you had something to do with it. As if it was you saying hi...
...
Yesterday I watched a movie called Rabbit Hole. It was about a couple that lost their 4 yr old son after he was accidently run over by a car. :( It was about how they dealt with their grief. Each one in their own way.
Some things I was able to relate to, some things I wasn't. Like how the mom wanted to erase all memories of her son. I guess it was easier for her to deal with the pain- by erasing the reminders.
I guess I did just the opposite. The house is filled with butterflies, angels & pictures of you- of all of us as a family. There are memories everywhere.
I couldn't imagine trying to erase those memories baby girl. Of trying to erase you. It would feel like losing you again & again...
There was one part that really touched me. It was a quote from the mom's mom, whom also lost her son but at an adult age from a heroine overdose. She had some years in on this terrible journey...
Oh baby girl...
I know I will remain heartbroken for the rest of my days. I will miss & love you forever.
I don't know that it will ever be "fine", or that things will ever be better than just "ok."
But we are trying.
I think about that call & how it didn't make me cry this time & ask if this is what it means to be "fine"?
Or that it was just a good day...that maybe next time it will.
...
The best part of the movie was the end.
When the couple asked each other...."what are we going to do now?"
They then begin to realize the answer is.....start living again.
One minute, one hour, one day at a time.
It's the only way. And I think this goes on forever my mouse.
I think it will always be one day at a time. Until we stop counting.
Until we see each other again.
...
What are we going to do now?
I will wait for your sisters to get home from school & have dinner.
I will take Kayla to her second job interview at Target.
We will take Rocky for a walk.
We will prepare our poster-board & awareness flyers for the conference tomorrow.
We will try & live again-
One day at a time.
Love always,
Mommy <3
...
Sometimes I just need to say your name....to read it or say it out loud. To know that you are real & that you once existed....that you still exist in, just in a different way.
I had a call the other day for a little girl of 11 yrs old with your name- spelled the same way. I don't even remember what the call was about. I just remember staring at your name & at first feeling reluctant, because I didn't know what kind of feelings it would provoke.
First it triggered the memory of my first anxiety attack at work, after taking a similar call.
But then something happened, something changed. I was able to get those thoughts out of my head & suddenly a calm came over me. Seeing your name almost made me smile. As if you had something to do with it. As if it was you saying hi...
...
Yesterday I watched a movie called Rabbit Hole. It was about a couple that lost their 4 yr old son after he was accidently run over by a car. :( It was about how they dealt with their grief. Each one in their own way.
Some things I was able to relate to, some things I wasn't. Like how the mom wanted to erase all memories of her son. I guess it was easier for her to deal with the pain- by erasing the reminders.
I guess I did just the opposite. The house is filled with butterflies, angels & pictures of you- of all of us as a family. There are memories everywhere.
I couldn't imagine trying to erase those memories baby girl. Of trying to erase you. It would feel like losing you again & again...
There was one part that really touched me. It was a quote from the mom's mom, whom also lost her son but at an adult age from a heroine overdose. She had some years in on this terrible journey...
Oh baby girl...
I know I will remain heartbroken for the rest of my days. I will miss & love you forever.
I don't know that it will ever be "fine", or that things will ever be better than just "ok."
But we are trying.
I think about that call & how it didn't make me cry this time & ask if this is what it means to be "fine"?
Or that it was just a good day...that maybe next time it will.
...
The best part of the movie was the end.
When the couple asked each other...."what are we going to do now?"
They then begin to realize the answer is.....start living again.
One minute, one hour, one day at a time.
It's the only way. And I think this goes on forever my mouse.
I think it will always be one day at a time. Until we stop counting.
Until we see each other again.
...
What are we going to do now?
I will wait for your sisters to get home from school & have dinner.
I will take Kayla to her second job interview at Target.
We will take Rocky for a walk.
We will prepare our poster-board & awareness flyers for the conference tomorrow.
We will try & live again-
One day at a time.
Love always,
Mommy <3
...
"rab·bit hole"
noun
Tuesday, March 21, 2017
23 months
Baby girl,
It's hard to believe that next month will be 2 years.
I'm trying not to dwell on it. But how can I ignore it?
It feels like I'm treading water, waiting for the next big wave to hit...
...
Good things to dwell on instead~
Papi got these plates around the same time I got the Haileyfly plates.
<3
Ayde also ordered the letters of your name for one of Papi's car...
All these small gestures are so sweet & they mean to much.
You are never forgotten my sweet girl.
We love you & miss you every single day.
...
We are always trying to find the light in all this darkness baby girl.
The only path that will lead us to you...
Love,
Mommy
It's hard to believe that next month will be 2 years.
I'm trying not to dwell on it. But how can I ignore it?
It feels like I'm treading water, waiting for the next big wave to hit...
...
Good things to dwell on instead~
 |
| <3 |
Papi got these plates around the same time I got the Haileyfly plates.
<3
Ayde also ordered the letters of your name for one of Papi's car...
All these small gestures are so sweet & they mean to much.
You are never forgotten my sweet girl.
We love you & miss you every single day.
 |
| Daddy found this star wand covered in glitter on your plaque on Sunday. <3 |
We are always trying to find the light in all this darkness baby girl.
The only path that will lead us to you...
Love,
Mommy
Sunday, March 19, 2017
My sweet girl,
I'm writing you while I have a little time at work. We've been busy the last few days with work, school & birthday celebrations. First Natalia's & then Papi's today.
It's still hard to celebrate these special times without you my mouse. Bella cried while Natalia was blowing out her candles. I took her to Papi's room & she kept saying, "She should be here Mommy, she should be here with us."
What can I say? Other than, you're right...you're right. She should be here.
I told her how you're here in spirit. How you want us to continue to make memories. But all that sometimes is not enough...Sometimes it just hurts too much & we cry.
A hug and holding of hands is the best I can do. It breaks my heart babygirl. I wish I could do more.
...
Something good:
Your auntie Zulen sent me a message yesterday to let me know they posted the BTO awareness posters in each of the 5 rooms in her doctor's office. :)
It really warms my heart baby girl. It means so much to have this support, to know that all this is not for nothing...
I can't cry at work so I'll stop here.
I just want to let you know, how much we love you.
Always always & forever.
Your mommy <3
I'm writing you while I have a little time at work. We've been busy the last few days with work, school & birthday celebrations. First Natalia's & then Papi's today.
It's still hard to celebrate these special times without you my mouse. Bella cried while Natalia was blowing out her candles. I took her to Papi's room & she kept saying, "She should be here Mommy, she should be here with us."
What can I say? Other than, you're right...you're right. She should be here.
I told her how you're here in spirit. How you want us to continue to make memories. But all that sometimes is not enough...Sometimes it just hurts too much & we cry.
A hug and holding of hands is the best I can do. It breaks my heart babygirl. I wish I could do more.
...
Something good:
Your auntie Zulen sent me a message yesterday to let me know they posted the BTO awareness posters in each of the 5 rooms in her doctor's office. :)
It really warms my heart baby girl. It means so much to have this support, to know that all this is not for nothing...
I can't cry at work so I'll stop here.
I just want to let you know, how much we love you.
Always always & forever.
Your mommy <3
Thursday, March 16, 2017
Snow days/memories
My mouse,
We finally got some snow. Your sisters were home from school for 2 days & went back today. Sissy wasn't too happy about it, but Bella was ready.
The snow started Monday night, as Sissy & I got to the VZ center to see Green Day. It was our first concert together- just the two of us & we had a lot of fun my mouse. I keep remembering the message you sent: to keep making more memories...
It was a good relief to sing & dance & even scream. Sissy got into it too- she is the one that twisted my arm to go, using her saved Christmas money to pay for her own ticket. She's a good girl my mouse. Sissy doesn't give me any problems, specially at her age- I remember how I was & I thank God she's so much smarter than me. I don't know if it's all the stories or lectures or her mature personality...maybe a little of everything. I know she won't make the same mistakes I've made.
So I thought she deserved it. At the very least to go out & have some fun & let out some steam.
...
The next day we took Bella sledding with the kids. She needed to have some fun too.
The cutest thing was watching Rocky in the snow for the first time. How you would love him baby girl. I'm sure you do. He loves the snow. He wanted to so bad to go free & run circles around the hills by Papi's house. But we were afraid he'd run off & never come back. So he dragged me around instead. I felt like a sled being pulled by a pack of snow dogs. :)
...
I missed you while watching the kids in the snow my mouse. I heard your voice among theirs, laughing & yelling...
Just like in this video I found in my camera last year. It was from when we lived in the apartments.
We've watched it so many times....specially Bella, laughing over & over.
My crazy girls. You had just gotten your retainer & it was hard to understand you. ;)
These memories we will always cherish baby girl.
https://youtu.be/7wMw6Ps4VNM
...
We all miss you baby girl.
Fly high our Haileyfly. <3
Always & forever,
Mommy
We finally got some snow. Your sisters were home from school for 2 days & went back today. Sissy wasn't too happy about it, but Bella was ready.
The snow started Monday night, as Sissy & I got to the VZ center to see Green Day. It was our first concert together- just the two of us & we had a lot of fun my mouse. I keep remembering the message you sent: to keep making more memories...
It was a good relief to sing & dance & even scream. Sissy got into it too- she is the one that twisted my arm to go, using her saved Christmas money to pay for her own ticket. She's a good girl my mouse. Sissy doesn't give me any problems, specially at her age- I remember how I was & I thank God she's so much smarter than me. I don't know if it's all the stories or lectures or her mature personality...maybe a little of everything. I know she won't make the same mistakes I've made.
So I thought she deserved it. At the very least to go out & have some fun & let out some steam.
 |
| <3 |
The next day we took Bella sledding with the kids. She needed to have some fun too.
The cutest thing was watching Rocky in the snow for the first time. How you would love him baby girl. I'm sure you do. He loves the snow. He wanted to so bad to go free & run circles around the hills by Papi's house. But we were afraid he'd run off & never come back. So he dragged me around instead. I felt like a sled being pulled by a pack of snow dogs. :)
...
I missed you while watching the kids in the snow my mouse. I heard your voice among theirs, laughing & yelling...
Just like in this video I found in my camera last year. It was from when we lived in the apartments.
We've watched it so many times....specially Bella, laughing over & over.
My crazy girls. You had just gotten your retainer & it was hard to understand you. ;)
These memories we will always cherish baby girl.
https://youtu.be/7wMw6Ps4VNM
...
We all miss you baby girl.
 |
| I hope she doesn't mind me sharing this. So sweet & pretty. |
Fly high our Haileyfly. <3
Always & forever,
Mommy
Wednesday, March 15, 2017
Sunday, March 12, 2017
Some days
My angel,
Tonight is a blustery one. The cold has returned & they are calling for snow starting tomorrow night. You're sisters don't want to get their hopes up but they are secretly hoping for a big snowfall to get a couple days off & to watch Rocky play in it.
I was all ready for Spring but a couple of snow days sound good too. Nothing in life is predictable baby girl, specially the weather these days.
...
I miss you my little girl. I've slept with the pair to your "pillow sheet" for a couple of nights. Then Bella one night.
We continue to keep moving forward, not having any choice. Bella started her ice skating lessons she got for her birthday & really likes it. She's getting better & better each time.
Sissy is concert crazy and wants to go to every show & get front row seats. I told her she needs to get a part-time job in that case since they are too expensive. Not only that, she will need to start saving for a car for when she gets her license in the fall.
She seems willing, although picky about what she wants to do. Employers are picky too- most want someone at least 18 years old with a high school diploma. So I told her she might have to take what she can get for now.
We'll see my mouse. I see your friends on Instagram & imagine you being the social butterfly asking me to take you to different places like them... I imagine you in the middle of all those group pics next to your BFF's. I imagine you coming home & updating me on all the drama.
I probably would of been annoyed driving you around but would of done it anyway. I would have listened to you tell me every detail of your day & all the drama with interest & amusement...just like I always did.
I wonder if you would of stuttered in that cute way when you were explaining something 50 miles a minute... in that excited & enthusiastic way.
All those little things I remember...all those things I miss.
...
Some days like tonight I can't wait to see you again & wish it were closer to reality. Some days like today, I can't wait anymore. :(
I love you my sweet girl.
All those times you made those snow angels in the snow... & now you are one for real. <3
Always & forever,
Your mommy
Tonight is a blustery one. The cold has returned & they are calling for snow starting tomorrow night. You're sisters don't want to get their hopes up but they are secretly hoping for a big snowfall to get a couple days off & to watch Rocky play in it.
I was all ready for Spring but a couple of snow days sound good too. Nothing in life is predictable baby girl, specially the weather these days.
...
I miss you my little girl. I've slept with the pair to your "pillow sheet" for a couple of nights. Then Bella one night.
We continue to keep moving forward, not having any choice. Bella started her ice skating lessons she got for her birthday & really likes it. She's getting better & better each time.
Sissy is concert crazy and wants to go to every show & get front row seats. I told her she needs to get a part-time job in that case since they are too expensive. Not only that, she will need to start saving for a car for when she gets her license in the fall.
She seems willing, although picky about what she wants to do. Employers are picky too- most want someone at least 18 years old with a high school diploma. So I told her she might have to take what she can get for now.
We'll see my mouse. I see your friends on Instagram & imagine you being the social butterfly asking me to take you to different places like them... I imagine you in the middle of all those group pics next to your BFF's. I imagine you coming home & updating me on all the drama.
I probably would of been annoyed driving you around but would of done it anyway. I would have listened to you tell me every detail of your day & all the drama with interest & amusement...just like I always did.
I wonder if you would of stuttered in that cute way when you were explaining something 50 miles a minute... in that excited & enthusiastic way.
All those little things I remember...all those things I miss.
...
Some days like tonight I can't wait to see you again & wish it were closer to reality. Some days like today, I can't wait anymore. :(
I love you my sweet girl.
All those times you made those snow angels in the snow... & now you are one for real. <3
Always & forever,
Your mommy
Friday, March 10, 2017
Wednesday, March 8, 2017
Great day
My beautiful girl,
It's amazing the things we can make happen, when we really set our minds to it. I thought about everything that's happened that lead me to sit in a room with three almost-strangers; sharing with them the string of events & reasons of why we were there.
Explaining to them what happened. Unable to control the tears or my emotions, unable to look at them in the eye. But they were certainly looking at me, most importantly they listened.
They didn't make me feel like a pity case. They were moved by our story & several others we told them about...other angels who lost their lives to this disease, in similar ways. They were astounded by the statistics of DKA & the increase of Type One diagnoses in the last decade.
Even though they were in the medical field- one a doctor, head of a hospital ER & also president of AAP; they listened with interest & awe, as they were learning all of this for the first time. Maybe they were...
They were in complete agreement that there needs to be more awareness & education. Not only on the parent level, but on the doctor & nurse level (because we shared with them misdiagnoses stories too) & on the school level too. Everyone, my mouse. Everyone needs to be aware.
...
After that, it was just working out the technical details. They were definitely encouraged & impressed by the fact that the whole campaign will be funded by Beyond Type One & that they won't have to lift a finger as far as distributing the actual material (posters, flyers, etc.) to the doctor's office.
There is just one matter that has to be approved by their board, which is getting an ok on giving Beyond Type One a copy of all the doctor's mailing list. Understandably, this is important protected info, they just can't have anyone have it.
That meeting will be at the end of March. If for some reason they're not ok with it, we've worked out a plan B & even C. The plan B worked for Texas....so there's hope. There's always hope, my angel.
...
Debbie is a true gem. Not only during the meeting in explaining the details of the campaign but in driving us there (because she knew I was nervous) & talking to me on the way over there, so I wouldn't be so nervous.
Then when we said good-bye she thanked me for sharing your story & said that "we will always keep Hailey's memory & legacy alive." <3
Can you believe it mouse?
Here I am thanking her with all my heart for joining me on this journey & feeling as though she really was heaven sent to guide me....yet she thanked me.
Really, in the end we are just mothers. Her son almost died when he was diagnosed. He was also in DKA. She realizes & knows our story could of easily been hers. This scared her enough to make a promise that she would do what she could to make sure that didn't happen to anyone else...
She cares enough to follow through on that promise. Only a mother's love could move mountains, my angel. There are no boundaries on a mother's love.
...
There are no other ulterior motives either. Other than to help others.
Us, the BTO organization- we're just people who have been effected by this disease in some way or another & want to see it gone altogether, one day.
The BTO organization was founded & is run by philanthropists who have the money & power to do more than we can; the little people. But they need our help too. Our voices make a difference.
...
Good people exist my mouse.
When you are constantly threatened by the dark, when you feel as though your world could crash at any moment....
It's in those times when we desperately need to know that good people, good things...they still exist.
It's our only hope. It's our only salvation to keep us going.
Like Debbie said too, keeping your memory alive will always be a reason too.
I love you my angel.
Every moment of every day.
I hope you are smiling in heaven.
Forever,
Your mommy <3
It's amazing the things we can make happen, when we really set our minds to it. I thought about everything that's happened that lead me to sit in a room with three almost-strangers; sharing with them the string of events & reasons of why we were there.
Explaining to them what happened. Unable to control the tears or my emotions, unable to look at them in the eye. But they were certainly looking at me, most importantly they listened.
They didn't make me feel like a pity case. They were moved by our story & several others we told them about...other angels who lost their lives to this disease, in similar ways. They were astounded by the statistics of DKA & the increase of Type One diagnoses in the last decade.
Even though they were in the medical field- one a doctor, head of a hospital ER & also president of AAP; they listened with interest & awe, as they were learning all of this for the first time. Maybe they were...
They were in complete agreement that there needs to be more awareness & education. Not only on the parent level, but on the doctor & nurse level (because we shared with them misdiagnoses stories too) & on the school level too. Everyone, my mouse. Everyone needs to be aware.
...
After that, it was just working out the technical details. They were definitely encouraged & impressed by the fact that the whole campaign will be funded by Beyond Type One & that they won't have to lift a finger as far as distributing the actual material (posters, flyers, etc.) to the doctor's office.
There is just one matter that has to be approved by their board, which is getting an ok on giving Beyond Type One a copy of all the doctor's mailing list. Understandably, this is important protected info, they just can't have anyone have it.
That meeting will be at the end of March. If for some reason they're not ok with it, we've worked out a plan B & even C. The plan B worked for Texas....so there's hope. There's always hope, my angel.
...
Debbie is a true gem. Not only during the meeting in explaining the details of the campaign but in driving us there (because she knew I was nervous) & talking to me on the way over there, so I wouldn't be so nervous.
Then when we said good-bye she thanked me for sharing your story & said that "we will always keep Hailey's memory & legacy alive." <3
Can you believe it mouse?
Here I am thanking her with all my heart for joining me on this journey & feeling as though she really was heaven sent to guide me....yet she thanked me.
Really, in the end we are just mothers. Her son almost died when he was diagnosed. He was also in DKA. She realizes & knows our story could of easily been hers. This scared her enough to make a promise that she would do what she could to make sure that didn't happen to anyone else...
She cares enough to follow through on that promise. Only a mother's love could move mountains, my angel. There are no boundaries on a mother's love.
...
There are no other ulterior motives either. Other than to help others.
Us, the BTO organization- we're just people who have been effected by this disease in some way or another & want to see it gone altogether, one day.
The BTO organization was founded & is run by philanthropists who have the money & power to do more than we can; the little people. But they need our help too. Our voices make a difference.
...
Good people exist my mouse.
When you are constantly threatened by the dark, when you feel as though your world could crash at any moment....
It's in those times when we desperately need to know that good people, good things...they still exist.
It's our only hope. It's our only salvation to keep us going.
Like Debbie said too, keeping your memory alive will always be a reason too.
I love you my angel.
Every moment of every day.
I hope you are smiling in heaven.
Forever,
Your mommy <3
 |
| Your sister did an awesome job in the strings concert. She wore this dress in your honor. She said to me in the morning, "It's going to be a great day Mommy." I got good luck wishes from Sissy, Daddy, Auntie & Ayde too. It really was a great day. <3 |
Monday, March 6, 2017
Meeting
Baby girl,
Tomorrow is the big day. I've been preparing all the material Beyond Type One & Debbie have sent me & I have to say- I'm really happy & proud to be a part of this. I'm happy to be able to keep my promise to you.
I've had to take breaks reading all the material on DKA- because it's a big "trigger" for me. Reading about all the symptoms & talk about comas, brain damage & death....
My PTSD starts back up & I feel myself starting to get anxious...it's just not good baby. All those memories come back & I just can't take it. I'm afraid of anxiety attacks.
So I had to stop. After all, I lived it...how much better can I explain it to them than by sharing what we went through? :(
I've learned that PTSD is real & it's scary.... I don't know if it will always be there. But I've learned to step back when I need to.
I'm hoping tomorrow won't cause another bad episode. I'm going to remember everyone's good thoughts & wishes & remembering that you are there in spirit, cheering me on.
I love & miss you so much. My sweet girl.
I will pray to God for strength. I hope he will hear me.
...
Then later tomorrow night Bella has her pyramid strings concert at the high school...just like you did. Daddy still has the pictures on his phone.
I will be seeing you everywhere tomorrow my angel. I can't wait.
I hope you can look after your sister too tomorrow- she's going to wear her butterfly dress in your honor.
We love you- and we never forget.
Always & forever,
Your mommy <3
Tomorrow is the big day. I've been preparing all the material Beyond Type One & Debbie have sent me & I have to say- I'm really happy & proud to be a part of this. I'm happy to be able to keep my promise to you.
I've had to take breaks reading all the material on DKA- because it's a big "trigger" for me. Reading about all the symptoms & talk about comas, brain damage & death....
My PTSD starts back up & I feel myself starting to get anxious...it's just not good baby. All those memories come back & I just can't take it. I'm afraid of anxiety attacks.
So I had to stop. After all, I lived it...how much better can I explain it to them than by sharing what we went through? :(
I've learned that PTSD is real & it's scary.... I don't know if it will always be there. But I've learned to step back when I need to.
I'm hoping tomorrow won't cause another bad episode. I'm going to remember everyone's good thoughts & wishes & remembering that you are there in spirit, cheering me on.
I love & miss you so much. My sweet girl.
I will pray to God for strength. I hope he will hear me.
...
Then later tomorrow night Bella has her pyramid strings concert at the high school...just like you did. Daddy still has the pictures on his phone.
I will be seeing you everywhere tomorrow my angel. I can't wait.
I hope you can look after your sister too tomorrow- she's going to wear her butterfly dress in your honor.
We love you- and we never forget.
Always & forever,
Your mommy <3
 |
| Bad pictures- the print qualities are much better in person. |
 |
| Good reminder for tomorrow. |
Sunday, March 5, 2017
Friday, March 3, 2017
The Light Between Oceans
I saw the movie The Light Between Oceans today after finishing the book a few weeks ago. These quotes are fresh in my mind:
"If a wife loses a husband she becomes a widow, but if a parent loses a child there's no special label for it. You're still a mother or father. Even if you no longer have a child."
“To have any kind of a future you’ve got to give up hope of ever changing your past”
― M. L. Stedman - The Light Between Oceans
“To make sense of it - that's the challenge. To bear witness to the death, without being broken by the weight of it.”
― M. L. Stedman - The Light Between Oceans
“Your family’s never in your past. You carry it around with you everywhere.”
― M. L. Stedman - The Light Between Oceans
Some of us spend our days trying to figure out life in between living it, my angel. I think I will be always looking for answers...
Although I think no answer will ever be good enough.
I love & miss you.
Mommy <3
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