Monday, May 19, 2008

Road Map to Holland......

If you have not read this book, you need to get online, or go to your nearest bookstore and buy it. It is simply incredible.

Jennifer has held a dear place in my heart over the last year and a half since I "met" her through her blog Pinwheels. I went to our local library about two weeks ago and requested this book, I figured since we didn't have the money to purchase it, and I knew it would be a great tool for the library to have, it was a win win situation.

When they called me on Friday night and told me the book was in, I was jumping up and down for joy. They had already closed for the night, so I was there first thing Saturday morning to pick up the book.

As I started reading it, the memories came flooding back. Rhett being born early, the NICU, and the diagnosis. As I was reading it I smelled the smells again of the NICU, and heard the sounds. It took me back to the painful day of leaving the hospital without Rhett.

I remember sitting in my room with an empty car seat, looking at it and seeing all of the other moms going home with their car seats full with their new little ones wrapped in blankets of pink and blue.

It also made me realize another thing. These rooms were filled with celebration. There were balloons, and gifts, flowers for the mother's. My room was empty. There were no gifts, there were no cards, or balloons, or flowers. Nobody had come to celebrate our precious new baby. They didn't know what to say. He wasn't in the room for them to come see, he was lying in a warmer a floor above. A whole new world for us and our families and friends, and then there was the suspected diagnosis.

Andy's way of dealing with it was letting everyone know that it was suspected that Rhett had Down syndrome. I think he thought in the back of his mind that he would be able to tell everyone in a big celebration that the test had come back negative, and that we had a perfectly fine baby, who was just small and needed to grow.

I don't think I ever really had the chance to grieve. I was too worried about Andy, and how he was dealing with it. I had to take the diagnosis, and be the optimist. I learned a whole day before Andy did that Rhett did indeed have Down Syndrome. But I couldn't tell him. He didn't want the results to come from me. He wanted to hear it from the Doctors, so if he were to get angry and upset it wouldn't be at me.

So when he came in that night after work, I left to pump. He held Rhett in his arms with the Boppy pillow supporting them and read him his Dr. Seuss book for the night. I told the nurses at the nurses station that he was in there, and they paged the doctor.

As Jennifer describes in the book, when you are pumping you are supposed to be relaxed, and thinking happy thoughts. Needless to say, that time I didn't get much milk, just two ounces, one ounce from each side. I refused to let myself feel anything. I couldn't have any emotions, not at that moment.

I went back, and Andy was holding Rhett, as tightly as he could, considering all of the wires and the fact that he was only a mere 4 lbs. He had tears streaming down his face, but somehow I knew it would be alright.

I remember that I kept asking, "You still love him though, right?"

"Yes, I love him now more than ever" was his response.

Of course my peace didn't last more than two hours, because then the cardiologist came in and told us that Rhett had a heart defect that would require open heart surgery. That was when I lost it. After all, how much can one's life completely change in less than 15 hours without having some type of a breakdown?

After the diagnosis of the heart defect, we didn't think much about the Down syndrome. I was given a blanket and an outdated book, as if that were to somehow help. I read the first 10 pages, then threw it in the trash as I walked out for the night.

MY child was not going to be limited in any of his abilities, and I was simply not going to listen to all of the bad things that could happen, or would happen. All I wanted to hear was that he was going to be okay, and that he had a chance to be the very best that he could be.

That was it, we left the hospital two days later, I called Early Intervention and told them I wanted someone to come to our house as soon as possible. We have never looked back.

Some days, I get knocked down, when I get that look from a stranger. That look of pity as they see me hauling his oxygen and him in his stroller to the Dr.'s office. I want to tell them not to pity us, for I wouldn't have our lives any other way, but I just smile warmly and nod my head.

Then there are the people who refuse to acknowledge that Rhett even exists. For some reason when you add a feeding tube, and oxygen to a kid, it's as if he has sprouted two heads and three rows of eyes.

But for the most part, people are warmed by Rhett's soul. When he says "Hi" to them as he passes, they reach out to him, and tell us how lucky we are to have such a beautiful little boy. Most people simply cannot resist his huge smile, that lights up his whole face and makes his eyes sparkle. I find that old men are the most captivated with him. I don't know what it, is but they go out of their way to say hello to him.

I know that we are truly blessed to have this little boy in our lives. He has touched so many, and there is a reason he is here. He has a mission on this earth, and it's a big one. I just know it.

Road Map to Holland made me think of the emotions that I had pushed deep down inside. The ones that I wouldn't allow myself to feel, or think. It brought them to the surface, and in a way, Jennifer's words, and her experiences healed me, they healed me when I didn't even think I needed to be healed.


Simmons Family: said...

I've followed your blog for a while now and I just wanted to say that post was fantastic! It brings back emotions that I have myself. We knew at our 20 week ultrasound that our little guy would have HLHS and were told things would be aweful if the baby also had Downs. They convinced us to take the amnio to be sure our baby was "worth keeping". It turned out he didn't have an extra chomosome, but looking back I wonder "why would it have mattered?"

Owen has already made it through 2 open heart surgeries in 3 months, NG tubes, Oxygen...the whole shabang.

Rhett is adorable and your strength is inspiring to me!

Hugs from Arizona!

Anonymous said...

Wow. Those pictures of Rhett are incredible. I can not imagine what you all ahve been through. He looked so little. Look at him now! What amazing parents you are!

It is great to read books that let us know we are not alone and others have been where we are.

Heather said...

Rhett is a gift to us all. Your family is a gift to us all. Your post was beautiful and it was a beautiful testament of the unconditional love you have for Rhett. He is so blessed to have you too!

Kyle, Aimee & Ava said...

Pam, I am very inspired by you. You make me want to be a better mother and a better person. This was a great post!

Ann said...

Rhett has captured my heart for sure! I am in school right now studying Education and am considering possibly (if it doesn't put me in school for another 3 years because my husband would flip if it did :)) adding a special education certification to my degree. I never thought I had a heart for special education but Rhett has made me realize something in me I didn't know was there. He is fantastic. Perhaps one day I will have the chance to meet you, him and your family. You are an inspiration

Raising Joey said...

Wonderful post Pam!

Love ya girl!


jkribbit said...

Pam, that was a beautiful post. You are indeed lucky to have that precious little boy. He stole my heart in the five minutes I spent with him at the hospital. Thank you for sharing.

little.birdy said...

Thank you so much for this post. I am studying to be a speech therapist, and in the classroom it can be so easy to reduce a child to nothing but a diagnosis. Of course the diagnosis is important, but what is more important is the ability to see beyond a label and a list of a characteristics and see a darling, huggable little miracle such as your boy. Thank you for sharing your story.

Niksmom said...

Pam, thanks for your beautiful post and the pictures of Rhett. I love that he's signing "I love you" in the second one! LOL

Yes, you were so right to throw out that outdated book they gave you and to decide for yourself that Rhett can do anything. H ecan and he will...on his own terms, too! That is one of the gifts I continue to get from all of our special kids.

RK said...

Well said, Pam, and wonderful pics. I have never heard anyone else say what you did about not caring about the DS after getting the heart diagnosis. I was SO the same way. I did ok with it all until the AV canal diagnosis and they said OHS at 3 months. That's when I lost it. Amazing now to look back. I wish I could have told THAT me that we would come so far in such a short time. :o)

Brent & Jodie said...

You are awesome, as always! And yes, Rhett steals your heart! I think of you guys every day and Rhett is always in our prayers. You are all fighters and much stronger than you realize. And by the way, Tyler gets the same reaction from older men. Funny! Love ya!

Brent & Jodie said...

You are awesome, as always! And yes, Rhett steals your heart! I think of you guys every day and Rhett is always in our prayers. You are all fighters and much stronger than you realize. And by the way, Tyler gets the same reaction from older men. Funny! Love ya!

Becca said...

That was a beautiful post, Pam. Rhett's an amazing little boy, and you're both amazing parents. We want babies, not diagnoses, and we will fight for these babies with everything we have. They deserve it, and they have made our lives so much brighter by being here. The people that can't understand that, the people who ignore children who have fought so hard and brought us so much clarity, those people will just never know, will they? Their loss.

The Bryant Family said...

I hadnt seen those of Rhett when he was born...Tuck looked about the same. We knew before he was born about all the heart defects and the Downs, so we morned him before he was born but quickly got passed it and went on the search for information. I am glad we knew before hand, we could not have been more prepared--his heart defect could have killed him IF we were not close to Mercy and the PDA valve closed and didnt know about it.
I am very touched by you and your family. You do an aweseom job and Rhett couldnt be more blessed to be a part of it. He is such a HAM!!!
Love the post and am going to have to go and get the book from the library as well to read.

Anonymous said...

We too had the NICU stay I knew the minute I saw Wyatt that he had Down syndrome, I could tell that something was wrong while he was in utero!! My husband, the veterinarian, needed to see the final test results before accepting it. The nurses kept saying it could be so much worse. At the time I didn't appreciate that feedback. Reflecting on the past 3 1/2 years I wished I wouldn't have even bothered crying because now here we are in Holland aka Wisconsin! Wyatt is so very blessed with good health so it makes our days happy and bright. He too is an "old guy" magnet. They seem to really take a shine to him along with the high school girls up at the gas station!! He knows more people in this little hick town than I do. I saw a young man at Home Depot last Sunday. He was their employee and was out gathering carts. He wished me a Happy Mother's Day. I turned to my Husband and said did you catch that? Later I saw him(Andy is his name)again, getting ready to punch out-he needed to call a cab for his ride home. That is when I saw a wedding ring so I asked our clerk if his wife has DS and he said yes and she is all he talks about. My older son whispered to me "Mom, that would be Wyatt someday". Yes it sure could...welcome to Holland!!
God Bless from Jayne in WI

The Wiley Family said...

Wow Pam, what an amazing post! You are such an incredible person. Rhett is an amazing little boy and your family is so blessed to have each other!

Sunny said...

What a great post! I have been wanting to read that book for awhile - I'm going to go get it today.

The Bryant Family said...

Pam it is me again, OK so my daughter noticed that Rhett is signing I LOVE YOU in picture #2. take a look. :)

Kitty, Nathanael's Mom said...

Pam? That post gave me chills and took my breathe away. Thank you for sharing those inner most feelings, you are amazing! We love ya all!!! Kitty and clan

Jen P said...

I apologize for being so far behind on you guys! I was in shock to see Chloe in the neck wrap. But it does look like she is doing well based on the beautiful smile!

I love these pictures of Rhett and the story of Rhett's history. You Birds never cease to amaze me with your strength and stamina with everything you have dealt with especially in this past year. I am putting Rhett's button on my blog today. I'm embarrassed I have done it sooner. That baby (he will always be a baby even after he learns to tie his shoes!) has captivated many people hearts including mine.

Lots of thoughts and prayers to you all.

Childlife said...

I just now got over here to read this Pam, and I am just in tears! This is just achingly beautiful -- your heart, your husband's heart, Rhett's. I felt so many of the same things during our NICU experience. You are one amazing lady! Thank you for sharing such lovely and honest thoughts from your heart.