Thursday, February 26, 2015

We're in Holland.

I sat down the other night and looked through pictures of our three-year old. I cried during her newborn pictures because I couldn't believe she was that small, once upon a time. 6lbs 3oz, 20" long, as a matter of fact. She was a mere 5lb 12oz when I brought her home from the hospital. I can remember that day like it was yesterday. We had to stay an extra day at the hospital due to her having jaundice and the weather was absolutely crazy. The day I had her, it was 20* outside and snowing. The day I brought her home from the hospital, it was 50* and hailing.

I teared up as I looked over her first year. I had videos of her crawling and walking. Pictures of her trying baby food for the first time. I even have a video of her saying 'Gigi.' I forgot I had that-- proof that she spoke and repeated words years ago.

When I got to her 1st birthday pictures, all of these feelings started rushing back to me. I feel like that was the moment I knew-- I knew something was.. different. I wouldn't admit it then, but looking back now, I had that pit in the bottom of my stomach. She cried the entire time we had her birthday party. 11am-12:30pm. I wrote it off as she was just tired or she was just a baby, but, she was miserable the entire time the 80+ people were in the room.

She eventually fell asleep and woke up an hour later.. after most of the people had left. There were about 15 people sitting around, waiting for her to do her smash cake and she was fine... peaceful. We all kept saying 'The nap did her well...' but even then, I just felt 'off.'

For her 2nd birthday, she melted down as well. Once again, we said, 'It's 1PM.. time for her to sleep' and she did. She slept through her birthday party yet again. Maybe it was some kind of coping mechanism for her? I'm not sure.

But I feel like, looking back, even in those moments so early on...  I knew.

And here we are, almost 4 years later.

4 years since she came in to this world and was the prettiest thing I'd ever seen ( only until her gorgeous sister  was born almost exactly 2 years later.)

I read a poem the other day that someone shared with me called 'Holland.' If you've never read it before, HERE is a link. It's definitely worth the read-- makes you think. So many people say, 'I don't know how you do it' or 'How do you handle all of this' or 'Was this diagnosis hard for you to hear'... And I never really knew what to say. Then I read this and it all made sense.

In this poem, the author writes:

"... everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

This sums it up.

It's been a month and a half since we heard the words that our three-year old is on the Autism Spectrum, but in reality, we have known deep down much longer.

However, since hearing the words, my processing has been different. Where once I looked at my 3-year old, and as terrible as this sounds, I 'analyzed' her.... things are much different now that we have seen a doctor and heard the words.. choked them down.. out loud.

As I always say, when I write all of this... I'm not saying we have accepted defeat or that our world is over. I'm just explaining how my feelings are in this process...

Now, I find myself in a constant battle between feeling a sense of pain when I see a 3 almost 4-year old carrying on an entire conversation with their parent or a stranger and feeling hope that that will be my three-year old one day. I'm in a constant battle between feeling bad that I wish my three-year old could communicate with me and feeling happy that my three-year old is healthy and safe. I'm in a constant battle between not understanding why she has to go through these obstacles to do every-day tasks and feeling strong enough to overcome them.

My mind is in a constant battle and some days I don't know whether to cry, be brave, write a happy blog, or write a blog that displays my raw feelings.

I find myself swimming in this sea of anger... faith... fear... determination...

How is that possible? That I could have faith and be angry all at the same time.

I was raised in church, so trust me when I say, I know His Word like the back of my hand. I know that we aren't supposed to question God and that all things work for good to those that love Him. I know He has everything in His hands and that He doesn't give us more than we can handle. I know that He designs us from the womb and we are crafted perfectly in His hands... I don't doubt any of that and I still believe every word with all of my might.

However... my human side... the side we all display, comes out. Jesus even got angry.

My human side. The side I try to hide from every one.. it shows at times and I find myself crying and feeling upset... hurt.. lost... mad even.

My daughter will go on to live a thriving life because we have such an amazing support system and she is a driven three-year old. HOWEVER, I still look at our situation right now and wonder 'What will 10 years from now look like? Will she talk? Will she comprehend what people say? Will she be able to go to the bathroom on her own? Will she be able to write? Will she be able to use a fork and a spoon? Will she go to school and have friends?' The faith in me screams: YES. Yes she will do all of these things!! But my heart, at times, fails me and I cry inside thinking 'What if she doesn't.?'

When I gave birth to her almost 4 years ago, this thought never even entered my mind. That I would have a child that cannot communicate with speech. That I would have a child that doesn't look me in the eyes or understand simple commands. A child that doesn't yell 'Bye Mommy, I love you' when I walk out the door or welcome me with a hug when I walk through the door.

When you have a baby, you never picture that. You picture them learning new words, having new milestones, potty training, starting kindergarten... all of it working together, flawlessly.

Then life throws you a curve ball and you find yourself going to meeting after meeting to set your child up in a special education preschool... and you're running to speech therapy appointments.. and occupational therapy appointments.. and sometimes driving there, things weigh on you, and you say in your heart, 'I didn't picture it being like this.'

No, I didn't picture this-- I pictured Italy, if we are being honest. I didn't picture Holland once. But, we are in Holland now.... and it's a different world than what I had imagined, but our bags are packed.. and we are ready for the trip.

This might not be what I pictured, but it doesn't change the depths of my love for her or my determination to do whatever I have to for her to flourish in every possible way. I see how smart she is in the little things she does-- the progress we make. She has more persistence than some adults. I knew that the moment she was born...

... We just have a different path to take, a different journey. Not a less beautiful journey. Just different.

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