Life's Journey with Down Syndrome


 
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 A Walk With Our Angel

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garn

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Number of posts : 23
Age : 41
Humor : knock knock
Registration date : 2010-10-07

PostSubject: A Walk With Our Angel   Fri Oct 08, 2010 2:21 am

This is my initial post on our blog after having Alea. It sums up her story.

A Walk With Our Angel
As I contemplate the future of this blog, I must admit to be a bit overwhelmed. My daughter Alea May, has Down syndrome. I want this blog to be a window into our lives with our angel, Alea. I have read several parents' blogs, most of the mommy blogs, about their children with Down syndrome. As an FYI, something I did not know until a few days ago, it is Down syndrome, not Down’s Syndrome, Down Syndrome, or Downs. It is written Down syndrome.
Before I discuss how I got to that point in my research, why don't we start with our angel's story? There have been many significant life events that have taken place in our lives the last three years that have prepared us for Alea's arrival. Perhaps these will surface as I document our journey. The first entry on this blog, however, will have one purpose, Alea's Birthday. I must warn you though, I am a dad, and dad's can miss details. Perhaps in the future we can get some guest posts from Mom, but for now, I am the best you got. I hope you enjoy our whole new adventure.
As most know, I am a sports fan. I like watching most sports, but my two favorites are Major League Baseball and College Football. The baseball team I follow is the New York Yankees. What does that have to do with Alea's Birthday? Well, just like Babe Ruth called his shot in the 1932 World Series at Wrigley Field, I called my shot. Our baby was due August 27, 2010, but in mid-July I started telling people she was coming August 14th. That was the day she would come.
I think mentally that moved the due date in Jodi's mind as well. I got home from work on the 13th and sat down to dinner. I was informed by Keena (9) and EC (7) that they had been on a few walks through the neighborhood with Mom. I was also informed by the two of them that right after dinner, we were going to hike to Bridal Veil Falls so that "Mom would go into labor". Well, apparently it worked, because as I went to bed that night, Jodi was starting to have contractions. We called my sister Stacy over so that she could be there with the girls when we had to go to the hospital.
The night came and went, and there was no trip to the hospital. At 8 am, Jodi decided it was time to go. We got there and they took us to the delivery room. Jodi was dilated to a two and 70% e-faced (whatever that means). An hour later the nurse came in and told us that Jodi wasn't progressing, so they would give it an hour more, and then give her something for the pain and send her home. An hour and fifteen minutes later, they came in with something for the pain. I thought I should tell them that once Jodi goes into labor she doesn't take long.
I learned the hard way when Keena was born. In 2001, the Dr. had come into tell me it would be a few more hours. I was fine with that, she had her epidural, and they had brought me dinner to enjoy while watching a documentary on Lavell Edwards. 20 minutes later he came back in and said, oh wow, she is ready to push. I considered asking if I could turn the TV up so I could finish the show but decided better (KIDDING!). I digress.
Anywho, they sent us home and told Jodi to take a nap. I had run a quick errand, and returned to find my sister headed out the door to get to the hospital with Jodi. I grabbed the keys and Jodi and I were off. On the way I remember thinking, "I can't believe it is finally here. Three kids will be so different". Of course I also thought, "and on the 14th to boot. I am such a stud"! Well maybe not the stud part, but I did brag to myself about calling it. We got to the hospital and headed straight to the room. That is when things got a little crazy.
There were a lot of nurses in the room, and Jodi was wanting to push, asking where the epidural was. Poor nurse didn't have the courage to tell her we were kind of past the point of epidurals, and I wasn't stupid enough to break it to Jodi. I felt like such a team with Jodi as we worked together. Actually, she did all the work...maybe, she was the team, and I was the team manager as I cheered her on and fed her Gatorade ice chips. They weren't really Gatorade ice chips ladies, that just fit better with the analogy.
Okay, okay on to the good stuff. Get this, the nursed told Jodi who was dilated to a seven and past any % of e-faced (I think the nurse said plus one), to not push so we could get the Dr. there. He was 15 minutes away. Her exact words, "Scream, yell, cry, whatever! Just don't push". Well, she waited and Dr. Melendez got there. Two minutes and three pushes later, he caught our angel Alea. He told me after I cut the cord, that I could take pictures. Oops, guess who forgot the camera's in the car. I ran and got them and when I got back, there wasn't much crying.
I started to record as they rubbed her back and chest trying to get her to breathe better. I stopped recording, I was feeling worried. After that, I remember taking a picture, them giving Jodi a minute to look at Alea and then taking her right down to the nursery. I made sure Jodi was okay and then I went to the nursery to check on her. I walked in and her back was to me. I can't remember what they were doing, but I remember they rolled her over and I looked right into her eyes. I knew right then that she had what I would soon learn was called, trisomy 21.
"Is everything ok with her?” I asked. They assured me she was fine, they just wanted her to get more oxygen. I felt better, and pushed it to the back of my mind. I went and checked on Jodi and stayed with her for a few minutes. I then went and checked on the baby. The pediatrician came in and started telling me some of his concerns. He then told me he had sent some tests in for trisomy 21, or Down syndrome. He very calmly told me that she had a couple features. He described a flat nose, the eye features and a thicker neck. He said he wouldn't be surprised if she had it, and he wouldn't be surprised if she didn't.
I would be lying if I told you I did not have a pit in my stomach. You tell your face to smile, but there were few moments where I felt pretty concerned. I returned to Jodi and told her the news. The Dr. then came in and reviewed with Jodi what he had told me. I kept telling myself that they sounded more like she wouldn’t have it than that she would have it, which was true, but I kept reminding myself, but why? I already knew, I knew the minute I had looked into her eyes. That is the only period I remember that feeling, even when the diagnosis was confirmed, I felt anger and some worry, but only for those few minutes did I feel that pit in my stomach.
The Bishop came and helped me give her a blessing. I specifically remember telling her in the blessing that she had come to a family who had anxiously waited for her. A family that was ready to love her just the way she came.
They then moved her from the Special Care Nursery to the NICU. One day after leaving the hospital, my 9 year old said, "If Alea hadn't been there, I would have no idea what the NICU was". I felt so sad for our girls. They had waited so long for a baby sibling. EC would tell baby goodnight almost every night while she was in the womb. Now there mom had the baby, and they still couldn't see her. Sibling visits are only allowed on Sundays and then each one only gets 15 minutes with her individually. They have been so good, but they are ready to bring her home.
The days after her move to the NICU are a blur. We anxiously waited for the results of the test. One day, Jodi and my mom came home from the hospital. My mom had that look on her face that something was wrong. I asked what was wrong...she hesitated and then looked at Jodi. Jodi was talking on the phone. I was beyond anxious. I wanted to know what they knew. I remember I kept telling Jodi to get off the phone so she could tell me. Probably 30 seconds passed, but it seemed like 30 minutes.
Jodi got off the phone and told me that she had “Down's”. I told her the tests weren't back, how could she know. She then explained that a nurse had come to her and told her that even though the tests weren't back it was time to accept it and get moving on some things that needed to be done for the sake of Alea's health. Jodi had been caught off guard by the way they informed her, and was very emotional. Then the anger came. I am not even sure what I was angry about; I just know I felt angry. I went up to my room and bawled.
So many things rushed through my head. How will this affect Alea? How will EC and Keena react? How will this change the close relationship Jodi and I had developed over the years? Some of the thoughts I had were so selfish, but they came still the same. Jodi came up, and we talked and I calmed down. Jodi is such a rock and example to me. We then returned to the kitchen as EC walked through the door. She asked what was wrong and we told her that Alea probably had what my cousin Melody has. She shrugged her shoulders and said, "So, I will still love her".
The anger lasted the next few hours as I wondered what else Jodi would be asked to endure. She has been through so much the last 3 years. Slowly the Spirit began to work on me, and I began to move forward. When I look back on those few hours, I feel slightly embarrassed by my thoughts and feelings. I will not lie, I still have fears of the unknown and I have them often. I like the following quote.
“Accept – then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it. Make it your friend and ally, not your enemy. This will miraculously transform your whole life”. Eckhart Tolle
So that is my approach. We love Alea so much! All it takes is 10 minutes of her in your arms to get rid of all concern. Keena and EC are ready to spoil her with their love. As a family we are ready to love her just the way she came. I am sure there will be challenges, I am sure there will be joy, and with that, we are ready to begin our walk with our angel Alea.
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Erin's Mom

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PostSubject: Re: A Walk With Our Angel   Fri Oct 08, 2010 6:15 am

Oh yippee, I get to be the first one to say how much I love your birth story!!! Welcome to the world, beautiful Alea! I am very excited to see how your angel will transform your family over the years. Welcome to the family....it's a little bonus you get when you are blessed with a child with Ds. You will learn more, have an overwhelming amount of pride in your daughter, and love more than you ever dreamed possible. You have been blessed! Your story had me nodding my head (yep, been there), laughing (it's effaced, not e-faced LOL) and feeling so excited all at the same time. Congratulations on your sweet baby girl! Kris
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garn

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Number of posts : 23
Age : 41
Humor : knock knock
Registration date : 2010-10-07

PostSubject: Re: A Walk With Our Angel   Fri Oct 08, 2010 9:30 am

Kris,
Thank you for the wonderful welcome! Erin is a doll!
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