Laying yourself down, raising up the broken to life

I just want to say, thank you SO much to everyone that has taken time out of their busy day, to come and read my little blog. Another huge thank you for all of the encouraging and supportive comments and messages that I have received, especially regarding my last post. To have so many people reach out to us has been overwhelming. Again, I say thank you and I wish I could give you all hugs because if you don't know me, I LOVE to give hugs, haha. I am hoping to post a day in the life of Fenix and curate a list of things that has helped him with sharing, cleaning up, and communication. We have learned SO much through his therapies and I would love to share that with you all since everything can be applied to ANY child.

I know, deep within my soul, that God made my son with a purpose. It is a sentiment that I have prayed and echoed since his diagnosis. It gives me comfort and peace on the hard days. I have clung to it with every ounce of strength in me.

But.

Some days are just hard. And I question God.

Why?

Kids can be so cruel, add on a diagnosis that makes it hard for my boy to socialize and communicate and he has a huge target on his back. How will elementary school be? Or Jr. High when everyone becomes that much more self aware and look for someone to take out their insecurities on. Fenix doesn't pick up on things like sarcasm or has the ability to read other people's emotions that well. Will he even know that kids are making fun of him?

 I don't want to think about these things but they keep me up at night. I want to protect my son from all of the ugly in this world, to save him from the hurt. My heart has left my body and is walking around and I can't bare the thought of kids or adults treating him differently or limiting him because of his diagnosis. I won't always be there to advocate and stand up for him.

I want this little blog to be an uplifting place. To show all of the amazing things that God has done and continues to do in our lives. However, I also want it to be an honest portrayal of our journey. Despite all of the good days and grace that is constantly being given, that I have moments of weakness and hurt and pain. I don't always have it together. I wrestle with God and His plan. I am trying so hard to heal the scars that run so deep with His love and compassion and mercy. To let go and to let God.

God had to break me down, strip me away of everything I was holding on to: doubt, pride, control and so much more. After Fenix was diagnosed, I was in the worst type of pain that I have ever experienced. Once I finally dug myself out of that hole, I could truly feel His presence, and I knew that even though it will be at times difficult, that everything was going to be okay. As long as I put all of my hope and faith into Him, that I could climb that mountain that before, seemed impossible.

A few months later, I was baptized at the church that I found God at 11 years before.
It was the same church that I invited a boy that I had only talked to on Myspace and had no idea that I would be meeting my future husband.
The same church that 5 years after that first meeting, we were married.
The same church that 2 years after we were wed, we were dedicating our first born son to the Lord.

I have learned so much about myself because of his diagnosis. That I am stronger than I gave myself credit. That I cannot do this alone and that I need God and a community of people that love and support us. That I need to humble myself and to share our story, the joys and trials, so that it will bring glory to His name.

Isn't he the most beautiful boy you have ever seen? I think so, even though I may be a tad biased.

I will never give up. 

I will always fight for him. 

He will ALWAYS know that he is so loved by us, 

our family, friends but above all, by our God. 

He is a child of God. 

"All these pieces 

Broken and scattered 

In mercy gathered 

Mended and whole 

Empty handed 

But not forsaken 

I've been set free 

I've been set free

Amazing grace 

How sweet the sound 

That saved a wretch like me 

I once was lost 

But now I'm found 

Was blind but now I see

Oh I can see it now 

Oh I can see the love in Your eyes 

Laying yourself down 

Raising up the broken to life 

You take our failure 

You take our weakness 

You set Your treasure 

In jars of clay 

So take this heart, Lord 

I'll be Your vessel 

The world to see 

Your love in me"

When my heart is overwhelmed, lead me to the Rock that is higher than I.

I wanted this post to be about our day to day activities and all the work that Fenix is continuously doing. But something happened a few weeks that I am still very upset about and honestly still processing. Ironically, it was the catalyst that made me want to start the blog, to educate people that know nothing about life on the spectrum.

I have looked forward to VBS (Vacation Bible School- it is during summer and is at most churches. It is a super fun way for kids to learn about the bible) since Fenix was a baby. A lot of my friends had older kids and everything about it sounded amazing. This summer, Fenix is finally old enough to participate! He loves school and church so much and I knew he would absolutely love going to VBS.

A friend told me about a church around the corner from where we live and the dates of their VBS. Fenix has summer school until 7/10 and with it being so close to home and starting after summer school ended, it was a perfect fit. I went by myself to the office to sign him up.

We have been attending our church for years and after Fenix was diagnosed, I did not inform his Sunday school class because honestly, unless you are familiar with autism, you would not know Fenix has it. There have never been any issues at church or school so I felt like, unless an issue were to come up, I do not need to inform them.

When I got to the church office, I filled out an information card and there was an area for medical/comments about your child. I debated whether or not to tell them about Fenix. I decided to write, my son has autism, mainly so that if needed, they would be just a little more patient with him. Once the secretary at the desk saw that, she immediately said that I need to talk to the pastor about Fenix. Once she said that, my cheeks got hot and I started panicking, trying to fight back the tears because I knew this wasn't going to end well. I had a really bad feeling about it.

The pastor came in and basically told me that, they are not equipped to deal with any special needs he has and they don't have extra people to help him. He seemed very uncomfortable and never asked me any questions about my son or how can they help to make this a good experience. I tried to tell him that he is very high functioning, is on the mild end of the spectrum and that he does not need an aid but at that point, I did not feel welcomed. Without him saying it, I knew that they did not want him there. I am a pretty receptive person and I know he was not going to flat out say, he should not attend but actions speak louder than words. I left the office quickly and got into my car and started crying. I called Matt to tell him what happened and he was furious to say the least.

That was my first experience telling a church about our son and that was the reaction I got. It was also my first time feeling discriminated because of my son's diagnosis. I cried hard and for a long time. That interaction released a flood of emotions and questions. This won't be the first time I have to go through something like this. I can toughen up and handle it in the future but there will come a day that I am not there and Fenix will have to go through it by himself.

Then my feelings of sadness turned to anger. My son has every right to be there. Also, with statistics like 1 out of every 68 children, the church should probably look into getting the proper support kids on the spectrum need. Fenix is on the mild end of the spectrum and would not need additional support but what about the other kids on the moderate to severe end. They deserve to be there and to learn about the bible just like everyone else.

My child is not a burden. But that church definitely made him seem like one. They did not take a single moment to ask any questions about my son. They immediately jumped to conclusions, which were they were not equipped to "deal" with Fenix. They never gave him a chance.

It also made me realize that they know nothing about autism. Or perhaps the only experience they may have had is with one or two kids that may or may not be severe. That is not my son. Fenix is completely and 100% unique. Yes he does have some struggles but don't we all? Regardless of what challenges or needs a child has, they should be able to attend any event at a church without feeling like some sort of inconvenience.

If they had asked me to tell them about Fenix, I would have said,

"He loves to learn. About everything and anything. He can name all the planets, he can speak some Russian words, he knows every car model out there, he has hundreds of sight words, he loves geography and can name the corresponding flag to dozens of countries. He says his prayers before eating and at bedtime and always end them with, I love you Jesus. He is sweet, kind, he gives the best hugs and kisses and is becoming more and more adventurous."

But they didn't ask me about my beautiful and smart son. Instead, they heard the word autism and closed the door on having the privilege of meeting our incredible boy. I say that because you better believe that we will not be taking him there for VBS.

They may not have been aware of the impact of their actions but that is the whole point of me coming forward and talking about autism. To bring awareness to people that know little or nothing about it.

This time, Fenix was blissfully unaware of what happened and for that I am thankful. I can only hope and pray that in the future, people will be more accepting and understanding of each other's differences. In the mean time, I have to try my best to build up his confidence and assure him that he is fearfully and wonderfully made. that he was made in His image, and that God has a plan and a purpose for him.

Your love never fails, it never gives up

I just want to say thank you so much for all the support, love and encouragement. Having everyone take time out of their day to read my little blog and send messages, meant the absolute world to me.

When I was pregnant with Fenix, I prayed like I had never prayed before, for a healthy baby. That is all I wanted. Well God answered our prayers indeed! Fenix was most definitely healthy and was a whopping 20 pounds at 6 months. He was the happiest baby ever and our first year with him was utter bliss. I was on cloud nine with this amazing and precious gift. I also fell in love with my husband in a way that I never thought possible. The man of my dreams and a beautiful baby boy, our life was perfect. 

About 2 weeks after his diagnosis, I decided enough is enough. I allowed myself to go through these feelings instead of bottling them up and pretending they weren't there. That would not have been the healthy choice. Quite a few verses spoke to me and this one just resonated deep within my soul, 

"Don’t be afraid, for I am with you. Don’t be discouraged, for I am YOUR God. I will strengthen you and help you. I will hold you up with my victorious right hand." Isaiah 41:10. 

It took a few months of lots and lots of prayer before I could finally see the light at the end of the tunnel. When you are told your son has autism and that they don't know what his future will be like, devastating doesn't even begin to describe that. At first, it seemed like we were about to climb a mountain and we were unsure of how or even where to start.

But, we had HOPE.
Hope in the form of our God and His plan.

Although we had no clue what we were doing yet, we had faith that our God made our son in His image.

Psalm 139:14 says, 

" I praise you because I am fearfully and wonderfully made." 

There is so much comfort and freedom with that knowledge. 

I wanted to start this blog from the beginning. It took a lot of pain and tears to get to where we are today. But through it all, God never left our side. He was there all along, carrying us when we were too weak. 

This is one of my favorite worships songs. I played it over and over as I cried and prayed from the depths of my soul. Through my son's diagnosis it brought me closer to God and taught me to lean on Him and to let go and let God. 

You call me out upon the waters 

The great unknown where feet may fail 

And there I find You in the mystery 

In oceans deep

 My faith will stand 

And I will call upon Your name 

And keep my eyes above the waves 

When oceans rise 

My soul will rest in Your embrace 

For I am YOURS and You are mine 

Your grace abounds in deepest waters 

Your sovereign hand 

Will be my guide 

Where feet may fail and fear surrounds me 

You've never failed and 

You won't START NOW 

So I will call upon Your name 

And keep my eyes above the waves 

When oceans rise 

My soul will rest in Your embrace 

For I am Yours and You are mine

Spirit lead me where my trust is without borders 

Let me walk upon the waters 

Wherever You would call me 

Take me deeper than my feet could ever wander 

And my faith will be made stronger 

In the presence of my Savior 

Oh, Jesus, you're my God! 

I will call upon Your name 

Keep my eyes above the waves 

My soul will rest in Your embrace 

I am Yours and You are mine

Thank you again, to every one that reached out and has supported us. 

I love you all.