Tuesday, April 7, 2009

 A different kind of beautiful

In the beginning, when he was only a few months old, I believed what they were telling me. The therapists, the doctors, all of the "good intentioned" medical staff who seemed to pour into our lives after we brought our first baby home. "He needs this therapy, this therapy, and this therapy. In addition to all of the outside therapies you take him to, you must do this list of exercises at home. To have the best shot at a normal life please do A, B, and C for your child." And so, I engaged all of my energies into this "best shot". And I focused on "normal". I admit that for a few years my focus was quite solid. A,B, and C it must be then! Dave saw the energy and where it was focused. He never had the focus I did. His focus was on his boy. His beautiful boy whom God had so generously spared. His boy who could breathe with out the aid of a ventilator. Whose heart beat in normal rhythm. Who was beginning to eat on his own. Finally. He would, ever so gently, try to remind me of these amazing facts. But ultimately he gave me the space I needed to learn the lessons that could only come from God. I had a similar perspective as Dave when we were in the hospital. All those weeks where we earnestly prayed that he would breathe on his own. Where each little victory was a huge milestone. Something changed for me when we brought him home. I became a stay at home mom to a special needs child. No longer were there specially trained nurses by his bedside 24/7. He needed me. He was my world. I had to do every thing possible to help him. Some of the therapies K has received have been stepping stones to many of his most wonderful physical accomplishments. Alot of the energies I invested into him were fine and helpful. When looking back it has been my mindset and particular goals I was hoping for that were less than admirable. Ultimately no part of K's progress can be attributed to any thing other than God's miraculous grace. I am starting - and when I say starting I mean real baby steps ('cause that's how I roll...) - to see the truth. And the beauty. And the gift in the unique. My son, K, will never be like other kids his age. Why is that hard for me? Why even in typing those words, do I get a bit of a lump in my throat. Humanness I suppose. Being drenched in the messages that surround me. Not having guarded myself against something I really am no part of. Not having drenched myself in God's Word. K is amazing. He is brilliant in his own right. There are things that are alot harder for him than most children. He has gone through alot more than most 6 year olds. His brain does not function like most children. He is not most children. He is God's child. He has been given to Dave and I as our child for the present. K will excel greatly at some things. His memory is crazy sharp. He memorizes entire books and DVD's, he brings up things from the past that I hardly even remember. K will struggle greatly with other things. When he underwent 4 hours of neurological psychological testing yesterday he was shown some action pictures and asked what they represent. He shut down. He said he was tired. He got agitated. His vision is extremely poor. And there isn't a whole lot more tweaking that can be done. He also struggles with any thing that is not concrete. He thinks in a very black and white concrete way. When asked to name emotions from pictures he gave a very blank look. He concentrates so hard. He works so hard. He takes a long time to process information that most just take in as they receive it. He needs extra time. He needs extra patience. This is my child. I used to think I had a responsibility to him that included things such as normacly and other kids his age. But do you know what? As much as I still see the value in a few therapies, dr. appointments, and working with him, I see far more value in things like, patience, flexibility, acceptance, appreciation, and recognize the beauty in the unique. My goals are changing. My heart is changing. And I am so glad, because I would miss out on so much if I stayed in the same old normal thought process. I am planning a more informational post that I will be writing soon. To let you all know the purpose behind yesterdays testing, where he is at with eating, school plans, medication, vision, etc. For today, I just wanted to put words to something that has been moving in my heart. Six years ago today we brought our baby home after his 96 day stay in the Neonatal intensive care unit of the hospital. Thank you Lord, for our one of a kind little boy.

18 comments:

Mel said...

I love the heart you show with your posts...having children who are different by other standards is a challenge but the joys are amazing..thanks for sharing

Lindsay said...

This is beautiful. and once again ... your writing makes me stop. think. pray. smile. cry. and know that HE has made everything beautiful!!

Lois Lane II said...

You are such an inspiration, such a joyful mother. K is so lucky to have you and Dave his parents -- God has blessed not only him but you as well. =)

Anthony's Mommy said...

As you know I love when you post about K! It always gives me a look at the future. And I have to say K amazes me! I remember that post where he read you a story! That seems pretty darn smart for a 6 year old. I think I was 7 before I could do that. I read stories of micro preemies doing math and reading words at 3-4 years old! That amazes me because I know I didn't do any of that at that age. Sometimes I think all these therapists put so much fear behind their appointments to keep us coming. They give us this grim picture and its frustrating! Because you don't know if its true or not. Not sure if you've been reading my blog but I have been struggling with the same thing.

Our little boys have been to hell and back and they are stronger then most "normal" children. I guess the question is, how can a miracle ever be "normal"? =-)

Katarina said...

Your transparency is wonderful. This post was beautiful. Thanks so much for the incredible picture of God's Hand working in your K's life.
This post brought tears to my eyes, happy ones, for I can see God working in your life as well.
You and Dave have been blessed with one incredible boy, thatnks for sharing him with us.

jennifer said...

This post is one of the reasons I love your blog so much. Real. Honest. No pretense.

Sara@i.Sass said...

Wendi, you always burst this heart open with your transparent posts.
You bring me out of my box and challenge me to go deeper...

sara said...

Wendi, that was a beautiful post. thank you.

Rachel said...

Wendi, he is so beautiful and so are you! What an amazing post!

Rach@In His Hands said...

Beautiful post, beautiful Mama!

Your sweet son, God's precious child, is most certainly one of a kind! Praising Him for that!

Love to you, Wendi.

Rachel said...

Thank you for letting us get to know your beautiful boy in this way...the way you share your heart is a gift to us and it has truly changed my perspective on so many things. Thanks for being real.

Jules from "The Roost" said...

He is perfect! Ps 139: 13-16 :0)

Sarah M. said...

So glad God entrusted K to our family!

Noah and Ryders Mommy said...

K is "wonderfully and fearfully made," and so lucky to have you two as parents. Beautiful post, Wendi.

Journey to Heaven said...

Your words are so gracefully spread through out your blog. You are a blessed woman of God and your family will be blessed becasue of that.
Continue to hold your head up high and I look forward to many more blogs. Thanks for being a spirtual inspiration to both me and my family.
God Bless

Jackie @ Our Moments Our Memories said...

I love how you talked about what you called "humanness". And yet, our Jesus knows this - He created us, and so I know He understands our feelings, our emotions, our reactions.

I truly believe that K could not have been blessed with better parents - just as you could not have been more blessed with any other little miracle. He's your child, God's child - truly one of a kind. I love hearing you pour out your heart as you walk this journey. Love you, my friend...and hopefully very soon I can give you a big hug in person!

Lisa said...

Beautiful. I love how God is always working in the hearts of those who seek him and you have a beautiful heart.

Angela said...

So beautiful my friend. Your son is such a gift---a marvelous display of God's workmanship---and created just for you and you for him---how wonderful that you know this...embrace this...celebrate this fabulous truth.