Thursday, June 30, 2011

To publish or not to publish

That is the question.

I've been sitting on this post for awhile now, mulling it over in my brain and trying to figure out exactly what I want to say. I've been ashamed that I don't want to publish it and then ashamed that I'm ashamed.  There is absolutely no shame in what I'm about to say; yet I'm afraid. I'm afraid to take this leap into a new realm of parenting. In fact, it doesn't feel like leaping. It feels like the rug has been pulled out from under me and instead of leaping, I'm free falling and don't know where my feet will land.

If you know anything about the medical field, you may have already deduced from previous posts, that we are entering the world of special needs. We've been traveling the world of special health needs for two years and that was and is a hard enough journey. And we came up here thinking we were reaching the end of the road. We came up here thinking this is going to be hard as crap, but when we get home, all the doctor appointments will slow down. Well.....not exactly. Fears that were slowly starting to creep into our brains were confirmed last Wednesday. A day that I never hope to relive. I was called back into an unexpected meeting with social workers and a family counselor. After watching Owen and working with him, they think his developmental delays are not just a result of his health issues. They threw a lot of information at me, and I sat there by myself and kept waiting for the punch line. Then I kept waiting to wake up. Then I realized that this was neither a joke nor a dream and I kept waiting for the tears to stop. They didn't stop until around 4:30 that afternoon and then I think they only stopped because there were none left and my eyes were pretty much swollen shut. It was really pretty. They even kicked me out of the hospital to go for a run while Owen napped and I was hunched over on the treadmill holding my stomach and crying while running. Yes - I got some strange looks but at least I burned a few calories.

They told me about the four stages we will go through.
1. Mourning: grieving the loss of the typical.
2. Storming: Researching and learning as much as possible.
3. Performing: Putting together the best team of docs and specialists for your little one.
4. Norming: Accepting that this is your new life and it will be okay.

And it will be okay.

I thought I was moving past grief.
Last night I sat in the aisle of Barnes and Noble and looked at books hoping for comfort and direction and hope. My hands slowly crept back over my stomach as I hunched over and nosedived from storming back to grief. I suppose that's to be expected. Because while the books did have some helpful information; they also had a lot of statistics and scary stories. And I had to pick myself up off the floor and pray to God to remind me that Owen is not a statistic. Owen is not a scary story. He is my son. More importantly, he is God's son and he is exactly who God created him to be. He is a sweetheart who just happens to be wired a little bit differently than the typical child.

We don't yet know the extent of his needs and we won't know until we get a full evaluation from a geneticist and a neural developmental specialist. (Do I still hope somewhere deep down that they'll say these delays are a result of his health needs and lack of proper nutrition? Heck yeah. But I'm also trying to face the reality that there is probably more to this.) We do know that he needs services and interventions more than he needs a label. We do know that we've been told by doctors here and in Raleigh to start researching special needs preschools. We do know that he needs to go five days a week next year. So while I was already sad about sending one boy away to kindergarten; now all three children will be in school next year and I'm not quite ready for that. We do know that we have a lot to learn and so the journey has begun. The research has begun. Trying to learn the many many acronyms that go along with this type of diagnosis has begun. (That in itself is a full time job. Is it really that hard just to say the words?) It's like learning a foreign language while visiting a foreign country. And one that you never really wanted to take a trip to in the first place.

So if there is still so much unknown, why am I writing about this?

For myself. 
It's that simple.

I'm practicing saying the words over and over. Special Needs. Therapies. Early Intervention. Special Education. Developmental Delays. Cognitive Delays. Speech Delays. Feeding Delays. Low Tone. More specialists. Sensory Disorders. Pervasive Developmental Disorders, Geneticists, Etc, etc, etc.

What do I hope to gain by saying these things and telling people these things?

I hope to claw my way out of mourning and into storming.

I hope to sprint to the finish line of Norming. I'm ready to get there. I've never wanted to accept something more in my life. I want to move past the fears and the doubts and the unknowns of the future back into the world of trusting God that my little man is going to be okay - that our family is going to be okay. That this will give Emma Grace and Isaac an empathy for others that they may not have had otherwise. I'm ready to start learning the lessons we're meant to learn and to be able to say these words and acronyms without flinching. I'm ready to advocate for my son and provide him with the best possible future. The future that God already has planned for him.

"For I know the plans I have for you," declares the Lord,
"plans to prosper and not to harm you,
plans to give you hope and a future."
Jeremiah 29:11

God knows His plans for my son.

And that is the biggest comfort of all.


  1. I thank God EVERY day that he chose you and Todd to bring the faith, love, and nurturing Owen needs. There ARE greater plans for Owen to not be harmed and for him to prosper on the path we are all traveling WITH him. You are not alone. We are not alone. Owen will never be alone. Our God is powerful and your witness alone has moved me to new victories within my own life. The love you and Todd are sharing through all this has deepened all our family bonds. The prayers Owen's Chips and Grandma Fish have received from our loving family of faith and friends has been a comfort and encouragement beyond compare.

    I'm sorry I missed your call earlier today. My heart, prayers and love are with all of you.

    Jeff and I are so excited about our days in NJ that are right around the corner. We long to hold Owen and give both of you some precious love and support. We are family. We are all children of God. We are on this journey together with God as our guide to the best medical and educational help for any and all needs Owen has and will have.

    I am VERY proud of you for your leap.....let's all fly together! For 8 years this saying has hung in my living room.....waiting for today! "When you come to the edge of all the light you have known and are about to step out into the darkness, FAITH is knowing one of 2 things will happen....There will be something to stand on or You will be taught how to fly."

  2. You are so strong and such a good mom for Owen. I know this is a tough time and I cannot imagine what you are going through, just know that we are with you and rooting for all of you and will continue to be there for you. I wish I was in NJ with you so we could be smart a**es about something inappropriate. :)

  3. Owen is a lucky kid to have you as his mom. Keep going....

  4. Isn't it wonderful to know you don't have to do this alone. Even better that your Savior knows and feels all that you do. I don't know anyone who would be able to do this as well as you. It must seem so hard right now, the fog will clear soon and the sun will come out. We love you guys, we keep praying!

  5. As I sit here at my computer with tears streaming down my face, I realize that the tears are a mix of sadness and hope. I am sad that sweet, beautiful Owen and his sweet, beautiful family have these challenges to deal with. I hate it. I wanted you to go up there and get a boost of confidence, not a kick in the stomach. But, I am hopeful because I know that if anyone can deal with this, you and Todd can. I won't give you any trite, catchy Sunday School phrases. You know 'em all, anyway. I simply give you a promise to pray for you and love you and help you in any way I can.

  6. Wow, what everyone else said. Ditto, ditto.. Wish I had more eloquent words, or comforting words, but I will just lift you up in prayer to our Father, our Dad, who longs to comfort his children and gives us peace that transcends understands, aka, you WILL have peace in the midst of this crisis. Love you and thinking of you often.

  7. Aw Rachel, ((BIG HUGS)). I love you and I don't know your family but I love them too. You are all in my prayers. Our journey hasn't been exactly the same but Matthew does have PDD--NOS, and so I have traveled a similar road. If there is ANYTHING I can do to help or comfort or listen, please let me know. You are deeply in my heart and prayers.