Skip to main content

Chosen Brave Souls

It has been 359 days.

In less than one week, Ivey will turn one. Wow. You all know her story.

It has been 11 months, 3 weeks and 4 days. During that time, a world of people have emerged. People who have courage and guts that most of us could never fathom. These extraordinary people come in the forms of infants and children. These sweet little ones are also surrounded by insurmountable towers of bravery…their parents.

One such parent, via the internet, took Ivey in to her heart also. Her own daughter has withstood heart surgeries and more. The mom’s name is Heather. And during some of the hardest times, Heather left encouraging words to help push Ivey and our family through. When you look at this blog, you see her work. She sweetly created the look of this page and all of its colors especially for Ivey, because she wanted to, nothing in return.

I know Heather's story because of our daughters' miracles. In the past couple of weeks, I have come to know her new personal story through the life of my friend Haley whom we lost this year. Heather now has cancer. I can not imagine the surge of emotions that are planking her family right this moment. With a daughter with needs and now her own health in the balance, her family must be reeling in unimaginable ways. Her husband must be panicking. She needs your prayers. I am leaving you a link to her page. HEATHER.

I am also going to leave links to the pages of my heart's special children - Addison - Blair - Eliot - Jack - Ashley - Ezzy and Jake all will grab your heart.

I am also going to leave you with the latest word that I have heard from Pablito Soria. They are kindred spirits right down to their genes. As to date, he is the only other individual that I have been able to locate with Ivey's genetic diagnosis. Thanks to Amy for translating the note from Spanish to English. The letter was sent to Father Peter; he forwarded it to me. If you have not noticed, IT IS A SMALL WORLD AFTER ALL.

Good Day Father:
We are from Argentina. I am the father of PAblito Soria, the boy that has the
same genetic disorder as Ivey Sirmans. Pablito is much better every day. He
laughs a lot and connects with us. However, he is unable to sit up by himself
much less pull up on his feet even though he just turned 1 year old. Anyway, we
continue to carry out studies. OUr family is Catholic. When I was 8 years old,
I belonged to the Legion of Maria until age 11.

We live in the northern region of our country, where there is a lot of poverty.
However, this does not present an obstacle for us to have a tranquil life. Like
Ivey's mother, the arrival of Pablito has changed our lives, bringing many hard
times but also many happy times. Now, we don't think much about material things but more the spiritual.

I'm going to try to kkep up communications with you. It is marvellous to be
able to communicate with people so far away, but whose thoughts are so similar
to ours. I read your message from November 8th but then I closed my Hotmail
account, I don't know if I had other messages from you or Mrs. Sirmans. I don't
have internet connection at my house, so I have to go to "Cyber Cafes" when I
have time. I've been able to update Pablito's blog page.

When my sone was in the ICU, we had the opportunity to make friends with other
parents whose children were also there - Lisandro, Angel Gabriel, Octavio.

Of those we were especially close with Lisandro's mother who is much younger
that us and gave us a lot of strength during the hard times. However, after
much fighting Lisandro died at 8 months old.

The same happened with Angel Gabriel. He was a little more than 1 1/2 years
old. He died in December 2006. We still talk to thier parents.

Now ther is Octavio and PAblito. They are very well. I'm going to make time to post
photos on Pablito's blog (first I have to learn how).

We pray for PAblito, for Octavio, for Lisandro, for Angel Gabriel. We also pray
for brave Ivey and for all those brave little souls who have been chosen to come
and suffer so that they may open hearts and awaken kindness in people.

Until the next time Father.
Gabriel Antonio Soria


It's hard to believe they're turning one, yet it seems like the longest year ever.

Of course I'm going to have to email you--there's no way a comment box could hold everything I want to say:)
LeslieAnn said…
I have chills up and down my legs! Praise God that we live in a time where we have internet and know without a doubt that we are not alone! I just cannot imagine how alone others must have felt before we had all of the information we do today...

(Thanks for the link too!) =0)
Barbie said…
We serve such a caring and loving God! I am so happy that He has connected you with others that can relate to your situation like only they can.

Wow only 5 more days until precious Ivey turns one:)
"chosen to come
... so that they may open hearts and awaken kindness in people." Precious. They do just that, don't they? I cannot look at peanut Addison without smiling - she's just too precious, as I'm sure Ivey is too.

Popular posts from this blog

The Price of Good Intentions

Last night I got my girl bathed and dressed for bed.  Our usual nightly routine.  Then we began our other routine in prep for the morning hustle to get out the door for a 6 am arrival time at Day Surgery.  The routine is necessary.  We discuss what will happen to her once her surgery begins.  Who will be with her.  Possible things she might feel and hear.  I explain that they may not know what she is requesting through her attempts to sign or her sounds as she comes out of anesthesia  and that she may not know where she is, but mom and dad will be close by, just waiting to get to her.  I reassure her that even though she will not know the people she is with during surgery, they care for her deeply and have her best interest at heart.  They will be as gentle as possible. And as always, this is the point where I cry.  I apologize to her for making decisions on her behalf, all based on the good intentions of doing what is best for her, permitting only what is deemed 'medically necess…

Does She Talk?

The thing about the term "nonverbal" - it isn't always accurate.  Technically, it's a terrible label.   I always get a little, how should I say this, perturbed when someone calls Ivey 'nonverbal'.  You see, this terminology leads others to assume Ivey can’t communicate.  Oh, she communicates.  Quite well I might add.   My question is it Ivey who is limited because she doesn't speak verbal sentences, or is it the rest of us who are limited because we only pay attention to words spoken verbally?  And, nonverbal always makes me think more along the lines of mute, but if you have hung out with Ivey for any short period of time, she is anything but mute.  Remember there was a time when I could apply the humivent on her trach as an on/off switch.  This came in handy in church.  Well, that was until she figured out how to use her finger to cover the hole... years since  decannulation it's been game on.  Literally.  

The nonverbal box tends to underestimate h…