Monday, August 30, 2010

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.

13 comments:

  1. Oh man. You are so kind to share this with the rest of us. I am so thankful to know your thoughts and hear about the rock Jodi is in your family. It is so intimate, but so priceless to hear. I felt so emotional when you said what Elise said in the kitchen. I don't know what to say but thank you.

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  2. Thank you for starting this blog. It is so hard to be so far away - thank you for letting us be a part of another miracle. (and thank you for being human and sharing your feelings, your words alone will bless more lives than you will ever know) We will be anxiously awaiting the next post!

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  3. What a beautiful story about a beautiful family. We love you guys. You are awesome.

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  4. Thanks for sharing Chris. You guys are an inspiration to our family! We love you!

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  5. I can't wait to read more! Such a sweet little baby! Just looking at the pictures makes me want to hold her and protect her; I'm sure you're feeling it much more. Thanks for letting us into your life story via this blog. All my best to the Garn family!

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  6. Wow! Thanks for sharing those tender moments with us. I know she has found a great family!

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  7. My eyes and heart are filled with tears of joy that Alea has been blessed to come to such a miraculously wonderful family and that she is in the home that Heavenly Father had planned for her. Hope to get to see her and hold her this weekend. Thanks for a great story - Chris I always have loved the way you word things, and I love the perception you bring when you write (maybe you should write a book - starting with this blog entry........) - seriously.

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  8. Thank you Chris for sharing this beautiful experience that you and your family have had so far with your baby Alea. What a special spirit to come to such a sweet and deserving family. I hope to meet her someday soon.

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  9. I am so glad you are doing this. Your family's story is amazing and I'm grateful that we get to share in your experiences. I miss you guys and can hardly wait to see little Alea!

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  10. Beautifully written. Your family is intended for greatness. Congratulations on your new daughter, and thanks for sharing her with all of us.

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  11. I so love this post. I definitely relived so many feelings from when Emma was born and understand so much of what you are writing about. Still your story is your story and I can't wait to read more of your walk with your angel......

    p.s. Elise's comment is so priceless, I loved it.

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  12. Chris and Jodi, I'm so grateful that you have written this blog. You are such an inspiration to me..I really look up to you guys. You have such a beautiful family and I know that Alea was sent to your family for a reason and one of those reasons is that the love you guys have for her and for each other can't be matched. Thanks for sharing your honest feelings, you guys are in my prayers!!

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  13. Thank you so much for sharing! I have wondered what this moment would feel like. I am currently pregnant, and just recently passed up the suggested genetic tests. I feel that it will not matter once our baby is here, I will love him no matter what. It is interesting to know that while I know that is true, there is still a process to it. What a sweet little angel you have. She is absolutely beautiful! Congratuations to you and your darling family! What an added blessing to your lives!

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