1/15/09

Opening up my heart...

I know that a lot of you have been wondering what is going on with us. After much prayer, many tears, unimaginable stress, and a step of faith, I have decided to do what I've needed to do for a while now...and that is to write about what is on my heart and what we are going through.

Our family has been struggling with something for years now, and we have mostly dealt with this silently and inwardly. We have faced resistance when we have opened up to some, and so it has been easier to deal with this heartache alone. But I (specifically) cannot bear this burden alone anymore, and cannot keep this imprisoned in my heart because it has become too large for me to hold onto alone.

I will be blogging about our journey through this experience, because I need to do it for me. For my sanity. For a way to let it all out, and I simply ask for your patience. Your prayers. Your kind thoughts. And for compassion, because we are in no way alone in this journey.

So...I will begin: Eli's Journey

From the time Eli was born, we recognized that he had some differences that were red flags to us. We were at that time on the regular military medical, so we were met with indifference, stinging comments, and rudeness. We just tried to convince ourselves that we were indeed, what they kept telling us we were..."first-time parents who have no real experience and knowledge, over-protective, too worrisome..." you get the idea. By the time he was supposed to be really speaking - and wasn't - I was very alarmed. But then when he started speaking in complete sentences, "they" just told us that there was nothing to be worried about...he had just been taking it in...working on his motor skills...etc. So life was fine. I will go ahead and skip to present day for now, and write more about the particulars leading up to this at a later time. I just will say that we've been struggling now for awhile, and we finally got to the point where we had to push to get someones attention.

Well, now we have our doctor's attention, and right now...right now we are in the process of doing testing and evaluation on Eli to determine for certain that he is what we are certain of... That my sweet baby is affected by Autism. That our struggles and heartaches do have a name, and that there are others out there who face this as well. We are one of "them". A statistic. An unfair, random selection of nature.

I love him more than life itself, and would go to the ends of the earth for him. I will go to the ends of the earth for him. I just couldn't keep going through this alone.

I do have to say specifically to my dearest friends...Please do not feel hurt that you found out this way. We've kept this confined to our family for so long, it's not something I even knew how to go about verbalizing.

So that's it. That is what has been weighing so heavily on our shoulders and making it impossible to even breathe in some moments. I ask for your prayers for our sweet boy, and prayers for Norman and myself as well. I need this outlet to write my heart out, and I am so grateful for your patience with me.

16 comments:

The Gough Family said...

Stace, may God bless you as you experience the love, pain, joy and vulnerability of "opening your heart". You guys are a wonderful family and we were blessed to have a short while in your lives and look forward to a continued friendship where we will support you in every way that we can. Sometimes it may be a word of encouragement, hopefully one day it can be hugs again, but always it will be prayers of guidance, hope and healing to our merciful Father above. We are so thankful that Eli has caring knowledgeable doctors that will help him through this diagnosis. Our thoughts and love are with you always. Love, the Goughs

Charity Childs-Gevero said...

Hello Stacey. :) I hope you have received and read my email. :) As I said in my email, thank you for opening up about this, and I will always be here when you need anybody to talk to. :)

You're alright, Stacey, everything will be okay. :)

Charity Childs-Gevero said...

Oh and...just for the record...you really don't owe anybody an explanation. If people are uneducated weirdo freaks, that's their problem, not yours.

Ava's Adventures said...

Are you having him evaluated by a Neurologist? Or, in the (civilian) private sectors and schools, a team of Speech-Language Pathologists, Educational Diagnosticians, and School Psychologists work together as a team on a diagnosis. Let us know what is determined through the evaluation. I will pray for your heart to have peace no matter what the outcome is.

Melinda said...

Stacey - I am so sorry that you have been carrying all of this around on your own for so long. May this time of opening your heart, soul and life to those around you be a breath of fresh air. You know that you have my thoughts and prayers and that I will be here for whatever you may need. I love you girl!

Ashley said...

Oh, my! This is terrible news. Eli is lucky to have you as parents who will keep searching for answers for him. You will be able to work through this and help Eli live a full and happy life. As random and unfair as it is, I am glad that Eli has you. Good luck and keep us informed. We are here for support!

Shawna Byrd said...

We will be praying that the people who assess him will be able to accurately diagnose him and be able to give you a ideas, suggestions, etc. to help him in the best way possible. All kids are different, but you know your son the best, and if you feel that there is something wrong there probably is. Just know we are praying for you and little Eli, and we know whatever the outcome of the diagnosis that the possibilities for Eli's future are endless! With the support of his family I know he will be able to acheive whatever he wants to in life. With Hugs
Shawna

Betty said...

Aww I´m so sorry to read about this!! I wish I could give you a big ((hug))! Please know that I will be praying for you. I can´t give you any advice and have no idea what it must feel like to go through this, but I hope you feel strengthened knowing that God is with and you have all of us behind you too!!

Ava's Adventures said...

I don't have your e-mail address, so I will send you a myspace message.

Stacey said...

Reina...thank you. Your family means the world to us, and your support has meant more to me than you could know. We love you all so very much. Thank you...

Charity, I did get your email...thank you from the bottom of my heart for it. It was perhaps the most beautiful thing anyone had ever written to me, and it made a difference in my ability to open up about this. Thank you for your precious, special friendship. You are truly amazing and a blessing in our lives.

Katie, thank you for your e-mails and information...I'll be emailing you more I'm sure since this is right up your alley...

Melinda...thank you. You are so right when you used the phrase "breath of fresh air". It feels that way...as if a huge burden has been lifted from our shoulders. Thank you for your support; it means so very much. It makes me feel not so lonely with friends who express such support to us. Thank you...from the bottom of my heart. Thank you.

Ashley and Betty...thank you so much. Your encouragement means so much, and I'm so blessed to have met you through this amazing bloggy world.

Shawna, thank you for your precious words as well. Having the support of our friends and family is what will ultimately make the difference between us being able to handle this and cope with it well versus not well at all. Isolation is not a good feeling, and we are so blessed to have the love and support of our friends. Thank you for your kind heart and for all of your prayers and well wishes...

We love you all, and you are so dear to us. Thank you for being such a bright light to us in such a difficult time...

Nikki said...

Stacey, words cannot describe how my heart hurts for you and your family. Everyone is right though, you are Eli's mom and you know what is best for him. God doesn't give us anything we can't handle. (and while my experience over the last year pale in comparison to your current struggles), I know more than most that God works in very mysterious ways.

My heart goes out to you, Norman, Chase and Eli, as well as your extended family. I know that things are tough right now, but there is light at the end of the tunnel.

Take care of yourself and stay strong. Which I know you will do already and remember we're all here for you in your time of need.

Much Love and Big Hugs, Nikki

Cajun Mama said...

Trust in the Lord with all thine heart; and lean not until thine own understanding. In all thy way acknowledge Him, and He shall direct thy paths. Proverbs 3:5,6.

My heart and prayers are with all of you. Eli is blessed to have you & Norman as parents....you never gave up on him. Hang in there Stacey, God is with all of you.

Liz said...

Praying for your whole family and that God will give you the wisdom and discernment you will need over the next years to make decisions for your beautiful boy Eli.

Dawn Hudson said...

I am sure its hard to talk about autisum and its effects on the child and the childs family. Knowing that Autisum strikes boys mroe than girls does make me worry more with their development. How did you know? You said you knew from birth, how? Carrying my third boy has raised some questions with this one. He seems overly sensitive to sounds more than the other two were ever while in utero. I am sure that I am being crazy but it just makes you wonder. I do hope that he is doing well, and getting the help he needs. I am sure you feel like you have a lot to make up for since it took them so long to tell you he had autisum.

Stacey said...

It is strange how the numbers are higher in boys, and oddly enough I found that in the military community the stats are even higher for autistic kids. It's odd...I wonder if we will ever have any answers.

The good news for you is that autism *usually* strikes the firstborn male. So if your oldest son is just fine, then I would say the odds are not high that your 3rd would end up being affected.

It is no exact science, and sometimes it does end up affecting a child, no matter what the birth order was. Sometimes families even have 2 or 3 autistic kids... It's just impossible to tell.

With Eli, he was very colicky. Very inconsolable. He was very particular, and he had a lot of sensory issues. Tags bothered him, certain fabrics irritates him...just weird things. He is very sensitive to sounds, although that didn't become apparent until he was about 4.

All I can say is to just keep being aware. Maybe even keep a journal with what you are noticing. I pray that it is nothing and it is just the usual mommy worry...but if there is something wrong, it would be helpful to you later on to have a record of what you noticed and when you noticed it.

If you feel that something is odd, just keep paying attention. Mommies always know. We have that 6th sense. I'll be keeping you all in my prayers that he is born precious, and beautiful and HEALTHY!!! :)

It did take us so long to get the autism diagnosis, but we knew for a long time that something was wrong. And we went through soooo many wrong diagnosis' before we finally got to this intensive testing place where they could pinpoint exactly what it is. It's not easy, but it's the best for him...We just miss him so much.

(I will be doing a post soon on autism and some facts and statistics on it...) - But hopefully this info isn't something you ever need to know :)

Lindsay Pritchett said...

Hi Stacey,
I just now read about Eli, I don't know what to say, or what you are going through, I don't know how that feels, but what I can tell you is that I will send up his name in my prayers and that you will feel God's presence when your patience is at its end. Much love, Lindsay