Wednesday, April 22, 2015

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. 

Saturday, April 11, 2015

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.