Holland Here I Come

I have the writing by Emily Kingsley hanging on my refrigerator door. If you are a parent of a special needs child, you know the writing I am speaking of. I read it daily as I open the refrigerator door umpteen times. I have come to regard "Welcome To Holland" as our Mission Statement as proud new parents of a special baby girl. If you are not a special needs parent, you probably have no idea what I am speaking of. I invite you to my refrigerator door.

My first encounter with "Welcome To Holland" came from a friend here in Rome (whom is also located in Holland)....since then, I have imagined myself in an airport, boarding a plane to Italy, taking off, getting nervous at the sight of the ground disappearing, watching the ground get closer, then hearing the stewardess say over the intercom, "We are now approaching Holland" and as stewardesses often do.....she starts to describe the weather/temp/and view of Holland - I watch Holland from the window of my plane. Instantly, I begin to panic. I hear Matt (the non-worrier of this couple) say, "Don't worry, everything will be fine. We will work it out". As I exit the plane, the stewardess hands me my copy of "Welcome To Holland".

I then have no choice but to step off of the plane.................

And here we are three months later, still confused, yet happy and finding the beauty in Holland. No, it is not the Italy I have experienced with Knox and Walker and never will be. But, I am lucky because I have the best of both lands. It is now my turn to share.

The weekend we roomed-in at the hospital I came home on Sunday morning to regroup (if possible) then head back to FMC. This was one of the most emotional days of my life. I walked into my home that morning confused, humbled, extremely scared and in denial of my future. Honestly, there were very few "positive" thoughts. I tried to sit down for a moment to look over the newspaper. I love to read to see who was married over the weekend and all of the details. For some reason I scanned over the "Dear Abby" section, to which I never read because it always reads like a Springer episode. And until now, I have only been able to share this with one other person, but it has brought much comfort to me-when no one person could. I left home that Sunday morning a different person-never to be who I was before Ivey's birth. If you are a special needs parent, this is for you.

God was in the newspaper that morning to help me understand

WHY this baby girl was coming home to me.

It was faith meeting fate.

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth

It was time again for another birth.

Said the Angels to the Lord above-

"This special child will need much love.

"Her progress may be very slow

"Accomplishment she may not show.

"And she'll require extra care

"From the folks she meets down there.

"She may not run or laugh or play

"Her thoughts may seem quite far away

"So many times she will be labeled

" 'different', 'helpless' and 'disabled'.

"So, let's be careful where she's sent.

"We want her life to be content.

"Please, Lord, find the parents who

"Will do a special job for you.

"They will not realize right away

"The leading role they are asked to play.

"But with this child sent from above

"Comes stronger faith, and richer love.

"And soon they'll know the privilege given

"In caring for their gift from heaven.

"Their precious charge, so meek and mild

"Is heaven's very special child."

Edna Massimilla

You will find this on my refrigerator door also.

Love, Gwen

The World Through Ivey's Eyes........

I have been sitting and staring at the computer for about 30 minutes now. I can't quite figure out how to start this update. Today has been a day where we have gone through the motions and feel like we are temporarily substituting for the people who are really living this life. Does that make sense? Matt and I drove Ivey to Atl. again today. However, today we met with the Ocularist, he is not at Scottish Rite, but located off of Howell Mill Road. After another night of absolutely no sleep, I have decided I should probably let others in and give them/you the opportunity to walk with us through all of "this".

Ivey is now in the process of preparing the space where her eyes should be for prosthetic eyes. She is wearing enamel conformers in her eyes to help stretch the lids to allow for the synthetic eyes to fit into the socket space. Filling the space where her eyes should be will help encourage the sockets to grow and have a more normal appearance. As Matt and I were driving home, we both decided we should prepare you to see her. Ivey's conformers are clear and have a shell shape; they fit over the tissue where her eyes should be. It is startling to see the clear knobs that protrude out from between her eyelids. She will probably wear the conformers for 18 months and then be able to receive her first pair of eyes. She will wear the conformers every day all day. I would like to think this is normal, but it is not. Every week I will take them out, clean them and replace them.

On our way home today, we stopped for lunch. We have become accustomed to the fact that people will see the baby carrier, walk up and not know how to react to the baby with all of the attachments. We have been able to hold our heads high and explain the feeding tube, the mouth appliance and her eyes. The conformers have taken this to a whole new level. My heart broke as I explained to Knox what the conformers were. If a three year old can get "it", shouldn't everyone else? Thankfully, we have family and friends to help get us through this. I have been very fortunate to have great friends and my mom, who has been my backbone, to pull me through this. I used to think I was a strong person. I am not so sure anymore. How could I ever compare to this tiny baby and all she has overcome and accomplished in her short existence? I can't imagine the courage it takes for Tasha and Miranda to choose to jump into the middle of this with no fear or hesitation. I have heard a lot of talk about God lately and the choices that he made to get me and Ivey to this place. I am not so certain of the idea that God will not give me more than I can handle. Why was I chosen? How was Ivey chosen? Why were you chosen to be touched by this? Maybe I can handle this because I am surrounded by so many other strong friends and family who can "handle" this too.... If you have ever questioned God and why he does things that don't quite make since, just stop and take a close look at yourself. I had stop and look around and here is what I found.....He is there when I look at my husband and babies. He is in the smiles and tears of my family. I hear him in the voices of my friends. Ivey knows him through the compassion and love of people who have never met her. Maybe this his way of keeping us all grounded. Maybe Ivey's inability to see the world through her eyes gives her the greater ability to see the world strictly through her heart.

Matt and I wanted to share one of our favorite moments with all of you. This picture was taken as Ivey arrived home from the hospital. (That is a bow in her hair!) Many of you have heard the story of Knox telling us that he was going to have a baby sister-Matt and I did not know that we were already pregnant with Ivey. He was so excited that his baby sister was finally home. Walker, on-the-other-hand, had no idea that he had a baby sister-until this moment. They are both very observant little boys. Knox informed me one day in the hospital that he was going to tell the doctor that Ivey needed another hole in her nose. (So it is okay to look and ask questions. We will all make since of this in our own way.) Knox and Walker love Ivey very much and they tell her so constantly. Walker loves to peek into her crib. If we are holding Ivey and she is in kissing range, he loves to kiss her. I am sharing this to let you all know that Ivey brings happiness to the boys. Knox and Walker do not know that their life with their baby sister is different from their friends. We want all of you to share all of the wonderful times with us too. There will be many great times. You have all been very gracious to our family. The result can be seen on the faces of these precious babies. G

Special thanks to everyone who has prepared a meal, dropped off a casserole or sent a gift certificate to the Sirmans Family. Gwen has said repeatedly how much she appreciates the meals. We originally scheduled meals through the end of July. We would like to continue to provide hot meals on M,W,F as well as freezer ready casseroles as long as it is helpful to Gwen. If you would like to provide a meal please contact Miranda Styles at mirandastyles@comcast.net. Thanks so much for your love and support!

Hi Everyone-We did travel back to Scottish Rite today to see the pediatric opthamologist, Dr. Pollard. He did confirm what we already know, that Ivey will never have sight. Now we will move on to the next step, but we are not sure of the time frame. Ivey will be able to go through steps to prepare her eyes to eventually have prosthetic eyes... Tomorrow Ivey will travel back to Scottish Rite to visit the Cranio/facial clinic.
As difficult as this is, we are still enjoying our new baby girl. She is wonderful and becoming more content as the days go by. We, family and friends, have started to find a new "normal". We are adjusting to having a nurse in the house to care for Ivey during the nights. I have been very lucky to have my parents here to help with almost anything and everything. For all the heartbreak we are feeling, there is just as much happiness. We have taken on Sundays to be our family day where Knox, Walker and Ivey enjoy our unlimited, undestracted attention.
We are still waiting on the results of Ivey's MRI. The Scottish Rite neurologist has sent the disc to be read by his radiologist. Hopefully, we will have news from this soon. G.