Tuesday, August 30, 2016

Abby is not the same

"How are you doing?"

Does anyone else ever feel there are too many emotions all jumbled up inside like a huge game of scrabble needing to be put together before answering a question like that?  So... we choose "good" or "fine" and walk away feeling disingenuous. It's as if we desire to have a real conversation, but the words are just too much for us to handle in our own heads, let alone pass out to others? I've felt that way when talking about life these days. I so appreciate those who take the time to ask the question and wait for an answer, but am so disappointed when my words aren't up to the conversation. I want to connect in those difficult moments, but the voiced, aloud words are painstakingly hard to push out in a way that reflects what's going on in side of me.

What do we do when we're having a hard time formulating a word picture of our lives we want to invite others into? We don't mean to isolate but the moments are too heavy for words. We know we're just sad, stuck, insecure, frustrated but cannot connect them to the situation in any kind of semblance of order to make sense out of our own feelings let alone usher someone else into the mess without heightening our insecurity.

How about when the words finally find the right sentiments, but they're delivered onto not-so-ready ears? The listener may not have the framework of your relationship or be in a place to respond appropriately. Her mind may be down the hall chasing a child or back in an ugly early morning conversation.

 It's easy to feel naked and alone in those moments. You finally feel safe enough to let a tear roll down your cheek and the receiver grabs a tissue and shames it away rather than inviting the dam to  ahead and break down. Knowing those words and emotions need to find place in her heart as they come from yours.

Oh! I want to be that person whose heart is open and capable to stop and hear those words when they are spoken. To ask the question and not rush by while it's answered. To have the people in my life know I'm not a machine chugging from one place to another, but real live skin and bones loosely covering an open heart. One that beats just like theirs with joy, pain and all the beauty and sadness a life can absorb. To know my heart can always take more because that's who I am created to be. Knowing I can take infinitely more because I am not just me, but HE in me.

My emotional vomit

I write because I can more easily find the words without a person staring back at me.

I'm stuck in the three weeks of Abby being in the hospital. I've actually chosen to set it aside over the past few months because I need to do other things and remaining there paralyzes me. All the "what ifs" are just too much. I know some need to be thrown away as a bucket of unlikely fears, while others need to logically be dealt with.  I've resisted the emotional ones because "going there" makes it more real.

My fears...                                                                       truth...
Abby could die                                           She will die. Everyone dies.
She might live longer than me                   He's capable of caring for her w/o me
Abby will suffer                                         "His grace is sufficient" for me and Abby
I could no longer care for her                   I need help now and he's provided
I could've done something better              I give my best and trust God to fill in the
     that would've made a difference                 blanks                

One thing I have learned is sorting through the emotional dirty laundry is just as important, and maybe more, then the physical because left too long it will start to stink. The odor can even spill onto other areas of my life. For instance, my fear over my lack of control and the severity in the range of possibilities in Abby's hospital stay has heightened all my general fears. I've become fearful in ways I've never even thought to fear. I fear to the point of resisting new things, even when they could be fun and exciting. Uggg...

Abby's not the same

Abby's different.  Those are hard words to write and even tougher to read. And not just different where she likes green instead of blue, but...
I'm not sure she recognizes and prefers me anymore.
I thought she'd come out of it. I started this post awhile ago, but decided I was being a "Debbie downer" and should give Abby time to come out of it. I also didn't want to get caught up in mourning something that wasn't true or would change. I've also wondered if her emotions have just changed? Maybe she does recognize me, but isn't as happy about it as she used to be? The cynical me wonders if she remembers that pain and sees my face doing nothing beside her? Probably not truth, but the ability I've had for almost sixteen years to calm my girl seems to be gone now. She no longer dances and sings when she sees me in the morning. She no longer seeks me out above a stranger in the room. When she cries I cannot hold her and sing as I feel her body relax beside me. I feel like a caretaker... an advocate, but not the mom.
She didn't really want to get in the water at all. She wanted to sit in her
chair in the hot sun.

Therapy: Aging out

I battle between acceptance and fight. That answer I assume is somewhere in the middle. I need to let myself mourn the changes that are hard, but fight for the ones I still have control of.  I've leaned toward trying to help her communicate, but it's not an easy road. It's brought to light another hard reality about a growing child with special needs... aging out of systems.

Therapeutic services aren't near as accepting or easy to obtain with a fifteen year old like they were for an infant or toddler. In fact, they haven't returned my calls at all. We got put on a wait list, the same list we've been on since we moved here almost three years ago. I had forgotten about it because I got tired of waiting and went somewhere else (30 min away) and hadn't realized we never got a call. Finally got a call from speech therapy and she just referred us to someone else. It may end up being a good referral but it feels discarded today.

There's something I hadn't processed about my teenager with disabilities... it gets harder and the help available is dwindling. Those days of the whole therapeutic practice cheering Abby on as she walked for the first time are probably in our past. We used to have the whole world "ooing and awe-ing" over our special little angel, but now we've joined the "strained pity smile and don't make eye contact" crowd.

Naively, I thought the fight would get easier. I thought the days of attending therapies would be our most challenging days, but not being considered a candidate for therapy is vastly tougher. We have to show she can be rehabilitated, but that's doubtful at best because we don't really know what kind of gains she will have.

It's so hard because I'm not giving up on her, but I am mourning the fact that I'll have to figure it out on my own. I imagine a bigger city would be easier, but there's not guarantee and that's just not where we live... literally. I know God's not surprised, but I'm frustrated.

Step closer

The answer is always to set aside my plan and ask God for his. I cannot do all I think needs to be done. I must block out the big picture sometimes and do just what He's called me to do in each moment. I cannot fix or change the past, but I can choose how I walk into the future. God's answers always begin in the same place...

"Take a step closer"

As school starts for my three big girls, I'm trying to embrace the silence (as much as possible with a two year old). I need to listen in order to heal and heal in order to move forward. I refuse to stay in the same place. I don't know where this next season will take us, but there are four things I do know:

  1. It won't be any easier, so I can stop trying to get back to that imaginary place here on earth and set my sights on Heaven. I can mourn the losses, but ultimately strive to find contentment in the here and now as I continue to move forward. 
  2. I won't have to do it alone because He's always there, and he provides the people in my life to navigate each new season with me.
  3. Although it might not feel good all the time, I can trust He has good things in store for me. I can look with excitement to the future embracing the unknown rather than fearing it. 
  4. If I can be honest with these struggles, then Lord can lead me to the correct balm for each one. Until I'm honest with the thoughts and fears I'm trying to shove down and not deal with, they are just holes in my armor that will leave me more vulnerable later on in life when I am most weak and least expecting. 


  1. Hugz my friend. You have a beautiful grace-filled heart that convicts me. You are a blessing, you share wonderful thoughts and true words.

  2. Oh thank you for taking the time to put your heart into words. I pray that today you sense His presence and that your heart finds safe havens.


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