6/23/2014

Our Daughter Juliet and More Uncomfortable Grace

As you may or may not know, last year on May 10 we took our son Roger into Kindering, a center offering services for kids (ages birth to three) with developmental delays. He was 2 years, 2 months old and wasn't talking.  at his 18 month appointment I was on bed rest in my pregnancy with our daughter Juliet, so when he still wasn't talking at age 2 we took him in for testing.

That was the first day we heard the word "autism" regarding our son; he didn't fit my stereotype of autism so I really did not see it coming. My husband Jason wrote this post, Our Son Roger and Uncomfortable Grace, as our public announcement upon psychological confirmation of Roger's condition. I wrote this post, May 10, last month talking about what we have learned in the last year.

In one of my most raw posts I think I have ever published, I wrote in late August last year (I know the timeline is out of order; it will make sense why in a minute) about the ways I was processing the pain. One thing, upon re-reading the post now, that I find particularly interesting was my deep need to believe ever since May 10, 2013 that Juliet was not autistic. She seemed more aware of Roger than he was aware of other kids at her age. She engaged more and started talking a bit much earlier than Roger and without any therapy. Roger's speech therapist even noted that Juliet mimicked sounds that Roger was learning in his sessions (Juliet and I were always there with him) and she seemed semi-interested in whatever manipulative toy he was using. These are not typical behaviors on the spectrum.

But then, even at 9-10 months old, I started feeling like something was off. No, Juliet wasn't as delayed as Roger, but she also wasn't like her peers. At her 18 month appointment, in the autism screening (I think it's called the m-chat or something like that) they give, we marked over half of the warning signs. And in my gut I just knew that even though she's not like Roger, there's a very good chance Juliet would also be on the spectrum. Roger is a bit more severe of a case (a 6-7 out of 10) while still being moderately high functioning now and, hopefully, very high functioning later in life.

So, then, almost two weeks ago on June 10  I took Juliet into Kindering for her evaluation. I sat in the same room where Roger was evaluated exactly 13 months earlier, and as I answered their questions and watched Juliet be evaluated I just knew. Their preliminary results were that they see many of the markers of autism and that she qualifies for all services. But I knew long before they said anything. And I cried, because it was the same room. Like time just catapulted me back 13 months. I was more prepared than I was with Roger to hear the word autism and yet that didn't really matter.

Two days later we received her psychological evaluation results; because she's under age 2 it's a provisional diagnosis until we retest in about 6 months. But Juliet has autism, is on the spectrum.

We "won" the genetic lottery, in a sense. The statistics for a younger brother of an autistic child also being on the spectrum are 1 in 4, or 25%. For a younger sister they are 1 in 8, or 12.5%, which is to say fairly rare. Yet Juliet is definitely on the spectrum. Much of it is her lack of awareness of other children, her missing of social cues, that she doesn't imitate, her speech is behind--particularly for other girls her age--but both her receptive and expressive language are very, very behind.

It's all real. It's all happening again and it's all real.

What even to say? It is yet another paradigm shift. On the one hand, we have walked this path before and much of it is familiar. On the other hand...it is familiar. Excruciatingly, painfully, heartbreakingly familiar. I didn't even realize how much hope I had that Juliet wouldn't be autistic until that dream ended. Another twist in the road that I didn't see coming, but God did.

People say a lot that they are so glad that we are the parents of Roger and Juliet. Friends, people at church, each of the various therapists and people we have met that are working with both kids thus far, they all say the same thing. I know in part Jesus is speaking to me through them as a balm to my soul, that he has created and nurtured me as a loving Father to be a loving and nurturing mother to our kids. So much of my own painful past has been redeemed by God, and he has tenderly molded me into a mother that I know my kids are blessed to have. This is grace, unspeakable grace.

But then there is...the rest of it. The mixture of loving my kids beyond comprehension yet wishing I knew what it was like to raise a neurotypical, non-special needs child. I don't really wish I had a three year old who knew how to scream, "I hate you!" at me but then I do think that would be worth them being able to spontaneously tell me they love me, too. Roger has started repeating it back to me when I say, "I love you, Roger. Can you say, 'I love you, Mama,'?" It's beautiful and so sweet for right where he is. But it's hard not to ache with wonder at what Roger would be like without the chains of autism on his brain. For what sweet spirited, feisty Juliet would be like free from the bondage of autism.

Then there is the fear that we are genetically predispositioned for all of our children to have autism, including the ones we haven't had, Lord willing, yet. I cleave to Jesus through it, yet I hear the sneaky whisper that Jason and I are cursed and if we choose to have more children we are willfully cursing them. Even though the Holy Spirit is gracious and I don't believe the lie just hearing it is an endless stabbing of my soul.

Not to mention that I just never anticipated being a mother to special needs children. I do not resent this, because I adore Roger and Juliet and truly wouldn't change them if taking away the autism made them different people. This isn't the script I foresaw, though. I thought my difficulty as a mother would be not yelling at my children and constant repentance because I am so impatient and just want to be listened to. And it is that. It's that plus so much more that I never thought would be interwoven throughout the chapters of my book in the category of "motherhood."  I think about the murmurs of sympathy when someone mentions the exhausting grind that it is to raise a special needs child. And then the bewilderment, the, "Oh, wow, how does she even do it? Poor soul," when a mother is said to to have multiple special needs kids. And I think, "Man, that is a hard lot to be called to."

Yet that's meThat's my lot.

I'm just heavy hearted. Grieving yet moving forward. The grind is already in progress--we went from free and relaxing summer to multiple therapies multiple times a week between the two kids. The financial burden of paying for what insurance won't cover is heavy. The planning and organization I have to build into our daily lives, things like visual schedules and planning out activities and the mega-intentionality I have to utilize at every turn just to help with simple skills like drawing or pretend play, etc, is just a lot. I can be uber organized and meticulous, but I don't like it. I like to wake up and go, "What should we do today?" and see which way the wind blows.

Plus the emotional burden on both Jason and me...how to even figure out somehow having alone time for each of us or together-alone time or resting...oy. It's honestly not even on our scope right now. Maybe it should be, but it just isn't. We don't even know where to start and while rest is good trying to figure out how to get it is so much work at this point that it feels like a burden to even think about. I fear that sounds melodramatic, but it's just the truth.

But here is our hope: Jason's and my hope for every individual in our family--now existing and any future additions--rests not in therapies nor my ability to organize and keep it all together. Our hope is in Jesus, because no matter how I feel, the truth is that he loves us. Yes, he willed this. Yes, it is still uncomfortable grace, but it is grace. It is grace that simply reveals how desperately we need him.

If you are like me, your preferred way to know how desperately you need Jesus would come snuggled up with your Bible, a hot drink (a moooooooocha for me. I cannot have them anymore. This, too, brings mourning.), a blanket, and utter quiet as you enjoy Jesus' presence.

Ha.

First of all, I can't remember the last time I sat alone, with quiet and my Bible and time to have prepared a drink beforehand. Like, literally cannot remember. Pretty sure Roger was a baby? I had a coffee date alone once last summer for a bit while a friend watched our kids. Except I ended up people watching at Starbucks because if I'm alone in public then that's what I do (while checking Facebook, let's just keep it real here). But, more importantly, my desperation for Jesus--for the Gospel of his perfect record taking the place of my sin laden one--is always found prominently in living my life. Most poignantly it is found in my need to repent of sin, which I tend to be much more comfortable with, and through suffering as an innocent, which is a consistent theme in my life and yet I am never comfortable with it. Likely this is why it recurs, as Jesus is, again, a good God of uncomfortable grace like that.

This is the scripture that was preached recently that really spoke to my heart. It is yet another balm to my soul to remind me in a fitly spoken word that God is in absolute control and I can trust him:

Now the word of the LORD came to me, saying,
“Before I formed you in the womb I knew you,
and before you were born I consecrated you;
I appointed you a prophet to the nations.”
                      Jeremiah 1:4-5 ESV

Just as God had every detail of Jeremiah's existence orchestrated and divinely willed before he was even in his mother's womb, I know he has the same providential sovereignty over my life, Jason's life, Roger's life, and Juliet's life. I can trust him. He has been faithful and tender to me my entire life, but particularly this last year Jesus has been so sweet to me. So patient and loving. So faithful to place people in my life who love me with a clearer shadow of his love than I have ever before experience. So in him alone I hope.

But let's end with the beautiful little girl that Jesus gave us. She is just the most delightful little girl and being her mother is a gift. I am thankful that when God said it was time to bring her soul into a body, my womb is where she began forming, just as God always predestined it to happen. Juliet is sweet and loves to give hugs and kisses, looooooves to laugh, loves to dance and giggle some more. Her little voice is beyond precious and as she speaks more and more my heart is enraptured with this gorgeous little girl that I am blessed to raise. When my face is near hers and she points to my nose and says, "Noooooousssse," my heart melts just as much as the moment they placed her newly born body onto my waiting chest. She has always fit snugly and perfectly into my arms, a shadow of her perfect filling of the space in my heart, one whose breadth I didn't realize until she settled in. Juliet's my mini-me and I couldn't be more grateful for the daughter Jesus gave me. So now, enjoy some pics of this little lighthouse of our family.

The moment we found out Juliet was a GIRL!!
If you haven't seen it, this is the video of the moment; 2/3 of the views on YouTube are probably me because I have watched it so many times. I LOVED finding out she was a girl.

One of my favorite photos of my pregnancy with her--look at how little Podge was!

My first photo with her. Utter bliss. Perfect fit.

Our first photo as a family of four.

Seahawks!

Juliet's first birthday party and one of  my favorite pics of our whole family!

How cute is she?

From our 5k last week. I love this little family.

The day after her official diagnosis, needing time to keep the diagnosis to ourselves
 for a few days and soak up special snuggles with my precious babe before entering the
litany of therapies that await.

Lastly, because I couldn't choose a fave, here are Juliet's newborn pics. Because sooooo sweet!

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