I Can Breathe.

We are officially 2 months in to the school year. It's Tayler's 1st year of pre-school. And today was our first parent-teacher conference ever.

When we have meetings with Tayler's teachers like the one we had today, it reaffirms every decision we have ever made for her. I'll admit, I was a nervous wreck walking in to the classroom. Unfortunately, when your child is special needs, most of the time you hear what he/she cannot do. It weighs heavy on a parent when you're bombarded consistently with the fact that your child cannot communicate verbally, has low comprehension skills, does not like spending time with others, etc. 

BUT it was a breath of fresh air in our parent-teacher conference today. The first thing we heard was: We love Tayler so much. *ding, ding* Loving our daughter is the key thing. Loving her ensures that patience will come a little easier. This is why I think there's a special kind of people that become teachers. You have to be packed full of love for kids that are not your own. Kids that will test you every day. Kids that aren't always 'easy' to love. We hit the jackpot with the group of teachers/techs, etc. that work with Tayler every day. 

Next, we heard about how she is developing in her listening skills; how she sits still on the carpet during rest time and plays with toys quietly; how she is making friends; how she knows her alphabet; how she is learning patience. 

We heard what she CAN DO. CAN. Not can't. 

My heart was so full.

But what happened next reassured me that these women are treasures in our life.

One teacher began crying and said, 'God gave us this little girl for a reason and we are grateful for it every day.'

When we were looking at preschool programs for our daughter 6 months ago, this is what we desired and I am so thankful that we found it. It was a long search with some tears, but today made us realize that Tayler is exactly where she's supposed to be. We are exactly where we are supposed to be.

Not only are we in love with the school and staff, but we are also grateful for the tech that has been assigned to her. She goes everywhere with Tayler to ensure that she is safe, following directions, clean, etc. She is one of the most patience, passive people I have met and we are truly blessed to have her caring for our daughter. She is watching videos and learning everything she can about Autism, how to handle it, etc. She is going above and beyond... not because she's paid to... because she loves our daughter. What more could two parents ask for?

Now, I know at the end of the day that we have a ton of progress to make, but to hear that we are making progress when we were told a year ago that Tayler wouldn't retain anymore knowledge means more to us than you'll probably ever know. She won't retain any new knowledge, but she can spell her name, say the alphabet, sing about 25 new songs, open and unlock doors, count to 20. (Hint of sarcasm there, LOL)

I needed today.

So many times I feel so burdened. Tayler is not a burden. But the daily dealings of Autism weigh me down. I just want the best for her. I want her to have the best life she can have with all of the resources possible. I want everyone surrounding her to be believing in her and pushing her. And I feel like we are there.

Today.. I can breathe.

Abandoned.

I know I've been quiet lately, but it's been a pretty low-key Summer. We've spent a lot of time together. Tayler has been in therapy once a week (which she loves.) As soon as we walk in the building, she knows exactly what room to go to now. It's become a great, consistent routine for her.

I recently applied to go back to school for my ABA Certification and I was accepted, so I have slooooowly been working through my first class. It is so much information to take in. Some nights I feel like my head is spinning. Especially with the discussion of positive reinforcement, negative reinforcement, positive punishment, and negative punishment, but I am getting there.. little by little. I just keep telling myself it will be worth it-- especially when I'm able to finally stop doing photography (even though it's my passion) and focus on helping her! I really want to start working with her and applying these new skills, but I feel so burdened down with other things right now. I am ready to have more free time to focus on her...

And in other big news..

We enrolled Tayler in preschool.

And I am a bundle of emotions because of it.

Do you know what it feels like to have your heart walking around outside of your chest?? My kids are each individual heart beats... and do you know how it feels to walk your heart beat to the door and just leave it?

Now, let me be honest, we have an amazing support system. Her teachers, behavior itinerants, etc. are wonderful. They have had nothing but good things to say about the classroom and their routine. They seem positive and upbeat knowing that Tayler is entering their classroom. That isn't the problem. I'm not worried about trust or worried about Tayler's well-being whatsoever.

What I am worried about is how she will do-- plain and simple. Tayler struggles with simple things-- talking, sitting still, following commands, making friends. What happens when she doesn't follow an order? What happens when she has a meltdown? What happens if she refuses to listen? What happens if she doesn't sit still during their class time? What happens when people begin getting frustrated with her? She requires so much patience.

We had a meeting tonight and I just feel a mess after. Everyone is wonderful from the school-- it's my own worries and burdens I can't shake.

I get so angry in these situations.

Not with Tayler.

I get angry with God. And please know that I'm speaking with an open heart here. If you haven't ever been angry with God, I commend you. I'm just raw and honest when it comes with this stuff. I hear my daughter scream through a screening. I watch her struggle to sit still. I watch her get nervous. I watch her obsess over colors. (And note, I'm not saying she's stuck in this 'world' she's in. I'm just saying I am currently observing her actions.) And I get so mad at God. I found myself sitting in the van on the ride home tonight thinking, 'Why? Why on earth would you want a 4-year to struggle? Why would you want to make it hard on her to make friends? Why would you want to make my heart shatter in to a million pieces over and over again? Why would you want to see me cry myself to sleep some nights when I think about the future?"

And I know that there's a reason for everything, but sometimes a mom of a special needs child doesn't need to hear that because quite frankly, it just makes things worse sometimes.

Sometimes I just need to be mad.

It doesn't mean I don't love God. It doesn't mean I don't trust Him.

It just means I'm angry.. frustrated.. and upset with Him.

I'm not a doom-and-gloom person. I hope for the best for Tayler. I pray for it every single day. Every time I look at her. I find myself praying before bed some nights-- 'God, I know I can wake up tomorrow and she's healed...' I know I can. I have that faith. I know He is a miracle worker...

but there's those days I get angry because I think 'why won't He does a miracle for her?'

He knows my heart, so that's why I'm open about this stuff. There's no use hiding my pain.. my sadness.. my frustration. Some days, He knows, I feel abandoned.

Do you know how bad I long to hear 'I love you' from my daughter? Do you know how bad I long to have a conversation with her?

Do you know how much I know He can do it... and it kills me inside that He doesn't?

Everything happens for a reason... all in due time...

but sometimes that doesn't heal this kind of pain.. this kind of hurt.

I love that little girl more than anyone will ever be able to fathom and I will fight until the day I die for her to have a fulfulling life. I will fight through my anger. I will fight with hope. I will fight with faith. I will work my butt off to make sure she knows how much she is loved... how treasured she is.. and I will fight that she always sees her potential.

I love you, sweetheart. I will use every bit of strength I have to fight for you.

And I will keep praying.

And hoping.

And working.

Til He hears.

You Don't Prepare Yourself for That

We have been married for 5 years this year and we have had our fair share of problems and difficult times. I remember times when we would count out change to pay for our gas because Ethan wasn't getting paid for a few more days. I remember weeks where we ate only macaroni cheese and soups because we didn't have the money for a huge grocery bill. I remember having to turn down going out to eat with people because our funds were low. I remember being scared during the labor of our children. I remember Ethan getting hurt on the softball field and being so scared. I remember being on the phone with Ethan, hearing him get in a car accident years ago. We have been through a lot in our 5 years of marriage, but all of those struggles seemed like absolutely nothing yesterday. Now, I am not saying that I lack faith or I believe everything professionals are telling us, but please understand that just hearing words can take your breath away, regardless of whether you have faith or not. Financial struggles, our own medical difficulties.. They all paled in comparison to what a psychologist spoke to us yesterday. We were sitting there, discussing the future of Tayler... And the psychologist spoke the words, 'at the rate Tayler is learning skills, you need to be aware that she will likely need lifelong support. She may have to live with you forever and once you guys aren't able to care for her, it is likely you will have to place her in a group home. I don't foresee a future where Tayler sustains enough skills to live on her own.' (once again, I have faith, but those words are daggers, regardless!) My heart shattered.. And he just kept talking so I was left to pick up the pieces, stop the tears from flowing, and just sit there... Feeling lifeless. Ethan squeezed my hand a few times.. I knew he knew I was struggling. The meeting lasted about 20 more minutes and we left. As we were walking to the car, I realized I couldn't hold the tears back any longer.... They just started pouring. Ethan turned me around to face him and just wrapped his arms around me. I think we stood there for 5 minutes, not saying anything. It was in that moment I realized something. Life is tough. When you choose a lifelong partner.. Someone to build a life with... You know you'll have problems.. They're inevitable. We have had tons. But that moment right there.. You never prepare yourself for that. You never prepare yourself to see your child struggling and you never prepare yourself for your child to be 'special needs.' You never prepare yourself for someone to sit in front of you and discuss nothing but your child's weaknesses. You just don't picture that. But even though we didn't prepare for it, we are here. If you aren't married yet.. And you're trying to picture a life with someone... And you aren't sure if they're the 'one' or not... Vision you and your partner having children.. And a psychologist standing in front of you telling you that your child may never acquire the skills needed to live life on her own.. Do you feel strong next to your partner? Do you feel like you two can overcome this together? Because in that moment last night, I realized this is one of the reasons we get married. Because life is hard sometimes. You get devastating news and predictions... And at those times, sometimes all you need is someone just to hold your hand and say 'Baby, it might not be okay, but I will stand beside of you and our children regardless.' We have had tough times... But nothing compares to last night... And the strength we found in each other. You never prepare yourself for that moment.. But I am so thankful that I have a best friend that will stand beside of me through it.. Hug me.. Let me cry.. Let me yell.. Let me be angry... Tell me we are going to work

Together to show the naysayers what we are made of. Life is tough some days, but if you're lucky, you'll find someone to help you get through it. I married mine 5 years ago and it's comforting that I get to hold his hand forever. 

I Don't Have Time

We recently had an evaluation for our four year old. During this meeting, we were discussing our daughter's future-- school, doctors appointments, Audiology appointments, Optometry appointments, and more. I will not be disclosing where this evaluation took place because the point of this blog is discuss my feelings concerning my child-- not to downgrade a place of employment, one person, a group of people, or a profession.

During this evaluation, a psychologist asked me a question. He said, "What are your concerns for your daughter?" Now, this is a typical question for us during meetings, doctor's appointments, evaluations, and more. But it still stings every single time I answer it.

"What are my concerns? We have little communication with her and little comprehension as well. No matter how many times I see this in her, I ask myself the same questions-- Will she be alright? Will she have friends? Will she go to mainstream school? Will she fall in love? Will she have sleepovers? Will she move out on her own? Will she be happy?"

These thoughts are constant. I think about this every single night. Every single time I watch her sleep. Every single time I look back at her while sitting at a stop light. Every single time she's giggling. Every single time she's throwing a tantrum.

Finishing up my thoughts concerning my concerns for our four-year old, I said, "And last, will we be her caretakers for the rest of her life?"

That one can keep me up all night if I think about it too long.

I'm used to these discussions. I'm used to the doctor, psychologist, pediatrician, geneticist, etc. nodding their head, signaling that they understand my worries. Not this time though. It was different.

The psychologist looked at me straight in the eyes and said, "That's a huge possibility, Mom."

I just sat there, staring. Did he just say what I think he said?

Now please, don't get me wrong. I don't expect doctors to tickle my ears. When they try to beat around the bush about things, I'm usually the one saying, 'Be straight up honest. I can take it." I don't need someone to care about my feelings. I want the truth. I don't expect doctors to speak with an all-knowing voice that 'Yes, your daughter will be in main stream school. Yes, your daughter will have friends." I don't expect someone to be fake...

BUT.

I do expect HOPE.

If you look at my child and you don't see her full potential.... you don't see with hope... you don't see with faith.. I don't want you actively involved in our lives because none of us need that kind of negativity.

Staring at the psychologist, all I could think was--- she's 4. Her life is just beginning. How can you spend 15 minutes with her and judge her immediately? How can the only knowledge you have of her condition  be what we have told you in an hour... And you feel confident enough to say 'That's a huge possibility, Mom?' She's 4. 

I refuse to define her. I refuse to lose hope in my daughter's future because of where she is on the spectrum at 4 years old. I refuse to give up on her and I refuse to listen to negative people that see where she is now, not where she will be in 5 years or 10 years.

I've said it before and I will say it again: 

I am not perfect at this mom thing-- especially this momma of a baby diagnosed with Autism thing. I'm learning. I'm learning about patience and the skills I need to be better. Some days, I struggle. I struggle with fear and regret and uncertainty and a lack of faith. And I'm sorry for that. It's just my human nature coming out. I know I'm not perfect, but I will promise you one thing: you've got me forever. I will fight for you forever. I will be an advocate for you. When the naysayers say things that lack hope for your future, I'll stand up and defend you. I'll be your backbone. I'll be your voice. Baby, you saved my life. And I promise you til my last breath, I will fight to defend yours and give you a life full of promise, hope, and faith. You are my peace. My Serenity. My gift from God. I love you sweet girl.. With every single thing I have in me.

I refuse to keep people in my daughter's life that don't see potential. I refuse to listen to the words 'It is a huge possibility that you will be her care taker for the rest of her life.' I vow to my daughter that I will work hard and try and give her all of the resources I can to help her find independence and live a peaceful, happy life full of hope and faith. I won't give up.. Even when someone things our situation is hopeless. I love you, sweet girl. Daddy and I will always advocate for you because you are worth it. 

I Live in Two Lands

I live in two different lands.

And honestly, both lands are new to me.

I realized this the other day at our now-4-year-old's therapy session. She went back to Speech Therapy and my husband and I sat in the waiting room with our almost-2-year-old and our 5-month old. I'll be honest. I don't know how a 2-year old is 'supposed' to act (I know, I know-- 'normal' is just a setting on a dryer.) But seriously. I don't know what is 'supposed' to be happening. How many words should she know? What should she know mathematically? Should she be able to count higher than 10? Should she know her alphabet? 

So, we were just sitting there having a typical 'conversation' with our 2-year old because she's at the point now where you're pretty much able to do that for the most part. 

A lady was sitting across from us. She had just walked through the door and sent her daughter back with a speech therapist as well. She wasn't there to see our 4-year old walk back with another speech therapist. I'm sure she had no idea why we were sitting in a rehab waiting room. 

As we are sitting there talking to our two-year old, I see her watching in amazement. She says, 'How old is she?' And I say 'She will be '2' in a couple of weeks.' She then said, 'My daughter is almost '2' as well.. And she only says a couple of words. Do you know how lucky you are?'

I just kind of stopped because I've been there. Jealous. Jealous that the child the same age as our oldest daughter was talking up a storm. Embarrassed because I'm not sure if I did something wrong. Scared because someone might talk to her and say, 'Why doesn't she talk?' I've been there. I'm still there. 

But I live in two lands now. 

I live in a land of having one non-verbal child. And I live in a land of having one verbal child. 

And luck has nothing to do with either one.

I'm not 'unlucky' because my 4-year old is non-verbal. And I'm not 'lucky' because my 2-year old is verbal. I have two beautiful children and we are walking down two different paths with both of them. Different is the perfect word for it. 

I looked at the lady in the waiting room.. I knew those eyes. Misty from trying to hold back the tears. Hiding grief. Fear. Frustration. Jealousy. I knew them all too well.

I said, 'I don't know where she picks all of this up at.' And laughed. And then I let her know--- I'm grieving with you.

I then told her this is new territory for us. I explained how our 4-year old is non-verbal and we are working on speech and occupational therapy. She looked at me with a bit of regret. She said, 'I am sorry. I didn't know you were here for another child.' I told her it was fine. I don't get offended easily. 

We left and I sat in the car on the way home thinking about our two lands we live in. And both cause us pain at times. I have pain with our 4-year old because I grieve for what could be. (I am working on it but please know this is new territory for me.) I have pain with our 2-year old because she goes everywhere with us-- rehab, children hospitals. She sits in the waiting room with us.. And with parents who also have 2-year olds that don't say anything at all. And then they look at our 2-year old. And I have empathetic pain for them. For their pain. For their grief.

I live in 2 lands. And I look for the beauty in both. I look for the blessings in both.  And I try to let everyone know I don't consider luck to be a factor in either land.  They're journeys. And we are taking both with as much wisdom and hope as we can. 

Together.

I have my days where I feel helpless, lost, and afraid.

Friday was one of those days. We have moments where I feel as though we are going backwards with our three-year old as opposed to forward. It's difficult because there are constant ups and downs. 

I cried a lot Friday in to Saturday. Some times that's just my way to cope with my feelings. But Saturday morning, I decided I needed to get out of the house, so I loaded all three of my munchkins up in our car and headed in to town to pick up some food and get a fountain vanilla coke. I swear Burger King has the best. 

While driving in I had a huge epiphany. 

I've said over and over again that I feel more anger and frustration than anything most days. I know she is our gift and a blessing, but I can't help but feel angry some days.. Not at anyone in particular. I don't hold a fist up at God and blame Him. It's life-- and I know we all have our fair share of obstacles. But my spirit was just angry because I didn't understand why my baby had to be the one to face this. Why did she have to be the one to struggle to communicate, to make friends. 

I've spent so much time being angry, I couldn't see anything else. 

Everyone knows I've had my struggles with anxiety. There was a time I couldn't even leave the house, but by the love and help of Jesus, I have been able to push past the fear and live a much more fulfilling life.  

Even so, I've still always struggled to do things that everyone else easily does each day. I have to pray and ask God to wrap His arms around me every time I leave the house-- especially when I leave alone (however I didn't leave alone-- before now-- often because I didn't really have to.)

Fast forward to life now-- I leave alone at least 2x a week to take our three-year old to therapy sessions. Once every few months, I drive to take at least one child to the doctor. It wasn't easy for me at first, but over a month in, I feel so much peace in doing things alone. I've even got to the point where I even stop to eat lunch with the kids and run errands-- just us. 

I'm not for one second saying that I'm glad my child was diagnosed with Autism because, although I love every bit of her how she is, I want her to be able to communicate verbally one day. But I am saying that maybe there's a little bit of a silver lining in all of this....

Through taking our three-year old to therapy sessions that are helping her reach her potential... I'm finding mine. Through taking our three-year old to therapy sessions that are helping her find her wings... I'm finding mine. Through taking our three-year old to therapy sessions that are helping her become stronger.. I'm finding strength too.

I think my mom said it best when she said 'You two are growing together..' And I like that. I looked at her in the back seat, smiling out the window, and realized that we are both just finding out way, finding ourself. Together.

Grieving

March 26th will mark one month of therapy sessions for our three- year old. We have been attending one speech therapy session a week and one occupational therapy session a week.

As soon as we get there, our three-year old gets the biggest smile on her face. She jumps around the waiting room. See, she loves people. And she loves when people pay attention to her. So, therapy sessions where everything is one-on-one fits her like a glove.

During her sessions, I sit in the waiting room, right outside of the door to her therapy room. My dad or husband usually goes along with me and we bring our 1 year old and 4 month old to tag along as well. Heck, we call it a family adventure. (Our kids aren't going to know what to do when we go on an actual adventure together haha!) Sitting there allows us to hear all that's going on. We hear the therapist trying to get our three-year old to do something, we hear our three-year old scream 'Yo Gabba Gabba' in a growling voice (for some reason, this is what she screams when she is angry?)... I sometimes cry because I feel bad that she is uncomfortable.. Or scared.. Or frustrated.. Or angry. And some days I hold it together. Our one-year old is typically the protective one, yelling from the waiting room for everyone to leave her sissy alone. 

During these sessions, I have a lot of time to think.. And this week was no different.

You see-- my heart just aches some days. I love our three-year old more than you'll ever comprehend... And that's probably why my heart hurts like it does. 

I hurt some days because I just don't understand how to not be frustrated.... How to not be confused.. How to shut off my brain and feel with my heart. 

Confession time from a mom with a child that was diagnosed with Autism: some days I feel like I can't connect with our three-year old. And it's difficult and challenging. 

Our one-year old (she will be '2' in May) can talk your ear off. She will ask for me to turn on doggie ('Mr. Peabody & Sherman') or no-man ('Frozen') and we will cuddle and talk through the movie. She always points at the same things and says the same things, but it's still a lot of fun. We connect. We spend time together. 

And some days, that hurts. Because  when I try to hang out with our three-year old.. Build Legos or say the alphabet.. She pushes me out of the room or moves her toys to another area. I'll move to where she is and she will push me away. 

I love her. I hope she understands that. And I know she loves me because there are days I get a big smile and a soft rub on my arms. But some days, the pain of not communicating with her verbally.. Not sitting down and watching a new movie with her.. Not hearing her little thoughts.. It runs deep. 

And some days, through her therapy sessions and doctor appointments, I think about it. 

Some will say 'She loves you in her own way' or 'She will speak one day' or 'She has her own way of spending time with you..' And I get that. I do. But that doesn't make the grieving of WANTING to do these things with her any easier. 

So, I sit and write these words with tears rolling down my face because some days, I don't want to hear 'the bright side..' Some days, I just want to cry and have someone hear my fears, my worries, my frustrations, my confusion, my guilt, my heavy chest, my grief, my longing. 

I know she's perfect. I know she's beautiful. She's precious. She has a big heart. She loves smiling. She loves dancing. She loves when people visit. She hates when people leave. I know all of this.. I know she has a future. I know she will live a flourishing life. 

But it doesn't always heal the hurt in my heart. The fear. 

Some days are easier than others.. And then some days, like today, I sit with millions of questions.. Worries.. Wonders.