Friday, April 24, 2009

April 24, 2008

***Today my baby turns one. I am in awe of how much my life has changed and how much he means to me. This is an essay I wrote when Benjamin was about four months old. I am just now sharing it. Thank you to all of you who have been with us through the laughter and the tears.***

April 24, 2008.

That was the most important day of my life. In many ways, it was also the worst day of my life. But it has helped to define me. What I learned on that day has shaped who I am. It has tested my faith, and my faith has been proven.

In late 2007, I was about four months pregnant with my second child. My husband Matthew and I had a wonderful life. An adorable son Andrew who was almost two, a beautiful new house, and the life we always wanted. The life that we wanted was going according to plan. Our plan.

I had an abnormal triple screen blood test that showed a higher risk for Down syndrome, but when we went to have the level-two ultrasound, the high-risk doctor said everything looked normal, he saw no markers for DS, and even said that the baby’s heart looked great. So we opted not to have an amniocentesis. We even cancelled our follow-up appointment because it was so expensive to see the high-risk doctor. We knew we would never abort anyway, and we truly thought it would never happen to us. It wasn’t in our plan. And after we cancelled that appointment, I can truthfully say that it never crossed my mind again. That was in December.

On the morning of April 24, 2008, Benjamin Matthew Amick was born. A healthy 8 pounds, 6 ounces, 20 ½ inches long. We were so full of excitement and just couldn't believe how well everything was going. We didn't find out the gender of either of our babies until they were born, so the excitement of finding out that we had another son was tremendous. About an hour after Benjamin was born, my OB came into the recovery room. My mom and husband were talking a few feet away. I'm pretty sure I was holding Benjamin, but I can't remember. It is kind of all a blur. He approached my bed solemnly and I could just tell that something was horribly wrong. The look on his face said it all. But even then I thought that something was wrong with me. Like something had happened during the C-section and I was going to be unable to have another child; they found a suspicious lump--something. Anything other than what it was. Nothing could have prepared me for his next words. He put his left hand on my right arm, took a deep breath, and said, "I'm 99% sure that Benjamin has Down syndrome." All the clich├ęs you hear are true. ‘It was like the wind had been knocked out of me.’ ‘I was like a deer in the headlights.’ ‘I can divide my life into two sections--before I heard those words and after I heard those words.’ My first thought was, "No. This can't be. This isn't true. This is a bad dream." I vividly remember staring at a specific spot in the upper right-hand corner of the ceiling. Like if I stared at that ceiling tile long enough and hard enough, that my doctor would tell me he was wrong. That the whole scene would play in reverse and he would back up and leave. And I could get back to my normal baby. The one I wanted. The one I planned on having. But he kept talking. I could tell it pained him to have to break this life-altering news to me. I felt bad for him. I had so many questions that I was afraid to ask. It was all so new. I remember thinking, "That's it. We're finished having children. We wanted four, but we're done now. He'll always live with us. He'll be such a burden on us. We'll love him, but he will be dependent on us his whole life." Then I felt trapped. Like I couldn't breathe. I heard my doctor. I nodded my head. But I was silent. Because the things I was thinking you don’t say aloud. You don't say what’s in your heart, deep down. That you don't really want this kind of life. That you love your son but no, thank you, I didn't sign up for this.

My mother and husband could tell that something was wrong, so they came over to the bed. My husband told me later that his first thought was also one of entrapment. I honestly still feel that way sometimes. The doctor went on and pretty much said that there's no way to know how advanced Benjamin will be until later; there's nothing they can test to see how delayed he'll be. My lactation consultant came in after that and helped me to nurse him. She said that a lot of DS babies have trouble nursing because of low muscle tone in their mouths. But Benjamin seemed to do really well, and still does to this day. It's what I prayed for the most when I was pregnant. That he would be a good breastfeeder. My first son was a horrible breastfeeder. It was months of struggle and spit-up; I’ve often said that nursing Andrew was akin to wrestling an alligator. I so desperately wanted it to go well this time. Little did I know that God answered that specific prayer because He knew I needed it.

The next day was the hardest I think. It started to sink in more. By this time, we knew about his heart defects and knew that he'd need surgery. We were able to do a little research on the Internet and were just still in shock. There were a lot of visitors. I was exhausted and confused. In front of everyone, I tried to keep a brave face on, but with my mom and husband, I just broke down. A lot. It was hard. It still is. The things that meant the most to me were the tears of other people. I specifically recall my friends Ginny and Juliet. They came separately, but they each just cried with me. It meant so much. They say that you're not supposed to say ‘I'm sorry,’ but those words meant the most. I was sorry. I am sorry. Maybe one day when he’s older I’ll be more accepting of it. I doubt that I’ll ever be glad that my son has Down syndrome. If I could take it away from him I would. But I can't. And he has it for a reason. And I have him for a reason. I have grown so much as a person through all this and can only imagine that I will continue to.

It was very hard to leave the hospital. We had been there for four days and had been in our little bubble. As we left, the reality of what our life now meant hit me. We looked back at the hospital, and my husband and I both cried. We remembered how greatly we anticipated this event. We got to the hospital at 5 a.m. for my scheduled C-section four days earlier and could not have been more excited. We had a specific outcome in mind. A boy or a girl. A Benjamin or a Katherine. But a healthy one. One without Down syndrome. But that's not what we got. It just seemed so unfair. And the pain was real. It was very heart-wrenching. I think that's the saddest I've ever been in my life. I still cry when I remember it.

People who have heard our story have said that they are impressed with the faith and grace with which we have handled things. I can only say that it must be God because I do not feel strong on my own, and I don't feel like I have things together. I feel lost and sad sometimes. But most of the time now, as I've had about four months to deal with this, I feel okay with it. I know that it is what God wanted for me, and I have a strong faith in Him, so I trust in His infinite wisdom.

It still is hard at times. And it will continue to be, I'm sure. I am more accustomed to the health things by now. Constant doctor's visits (but none out of urgency yet, just necessity) are just a part of life, as are physical therapy sessions. Benjamin will be having open-heart surgery to repair two heart defects at the beginning of October. Just the thought of that would scare most people. But I’m okay with it. God will get us through it.

I’ll be honest. Sometimes it just smacks me in the face and I have to take an evening to be sad and just cry and mourn. Mourn the life I wanted. Mourn the baby I wanted. But then I hold Benjamin and he smiles and coos at me. He needs me. And whether I always realize it or not, I need him.

36 comments:

Courtney said...

So beautiful. One of the greatest gifts Lucy has given me is the ability to sit and read something like this...and get it...on the deepest level...and I treasure that camaraderie.

Happy Day to both of you!

Erica said...

Thank you so much for sharing Angela. I won't even begin to say I know how you feel because I don't but I will say that B has changed my life, he made me realize how precious life is and how it can change so quickly. He is such a sweet boy, his smile melts my heart every time I see it. You do amazing job taking care of him. Hope you all have a wonderful birthday and I look forward to some cake pics!
Big Hugs!

Marci said...

Aww~that was awesome! Happy bday to your son!

Alicia said...

Beautiful Angela! I've checked out your blog before, but I know that I will be coming back more often. Thank you for being real. For being transparent. It encourages my heart. Blessing to your beautiful family! Happy Birthday Benjamin!
Alicia Fox

Shannon said...

oh, angela i just want to give you a big hug. thank you so much for not only writing this, but sharing it with us. you are truely amazing!!!

i hope today your family has a great day celebrating benjamin's first year!

hugs!!!

Christia said...

Angela I always appreciate your willingness to share your story with me (and the others that read your blog.) You and Benjamin have been such an influence in my life, and I am so thankful to 'know' both of you. I truly love you, and B, (and Andrew of course!) and feel blessed to have met you.

Happy Birthday little B!

Lisa said...

Angela...every time I read something from you about your experiences throughout this whole thing, I am moved to tears. I admire your candor and feel like I am inside your head while reading it.

You really are an inspiration to me.

Happy Birthday, Benjamin!! Have a fantastic day.

attorneymama said...

HAPPY BIRTHDAY BENJAMIN!! We Love You.

I should have come and read this before I put my makeup on this morning. I am crying with you as I have cried with you a lot over the last twelve months. In those first few weeks and months after Benjamn was born, I would have done just about anything to take the pain away from you. I remember calling you and just breaking down before I could even leave a 30 second voicemail.

But, you know what? It does not seem nearly as terrible as the scenarios that ran through my head initially. Look at Benjamin. He is so sweet and so smart and so capable. I remember you being so worried about milestones. He is sitting up. He is crawling. He is pulling up. He will be walking before we know it. He is amazing.

Happy Birthday Benjamin, Happy Birthday.

Branton Family said...

Happy Birthday little man! What a year you have had, and we are so proud of you. Keep showing off those muscles of yours and growing strong. Have a great day! The Branton's

Amber said...

I remember the "Benjamin or Katherine?" being the biggest deal of that day, before we knew. I remember Heather telling us to pray.

Someday, I'll remember hearing about Benjamin's many accomplishments that have yet to come. Walking. Talking (and backtalking, lol). Graduating.

I hope we're still in touch to share those things, because I think you're awesome, and I love to hear about B!

Today is truly a bittersweet day for you, I'm sure. But there's SO much to celebrate!

So screw WW, have some cake, and hug that boy since the rest of us won't get to!

Erica said...

"So screw WW, have some cake, and hug that boy since the rest of us won't get to!"

I second Amber!!

Beverly said...

Happy Birthday Benjamin!!!!

Laurie said...

Happy Birthday, Benjamin!

Thank you for sharing that. I can relate SO well to it, to those thoughts and feelings...and it's truly amazing to me how far we've come in our thinking since then.

heidi marie said...

Happy Birthday Benjamin!!

angela, i felt that when henry turned a year old i should have at least gotten a consolation prize for a job well done-you made through the first year sort of thing. your posts brought back so many memories for me. and your right, for me, life is either before ds or after ds. it is such a turning point. but hopefully more and more it will become easier and easier for you and your family. everyone is different! and while i am no longer saddened by henry having ds...there are definately times when it takes me aback and i'm like "wow, my son has ds." it just hits you sometimes. i think you are an amazing mom and i hope you have a wonderful celebration...not just for benjamin but for all of you. you have all been through so much and the road has not been easy. but you made it!!!

Anonymous said...

Angela, that was beautiful, and I am so honored to know you and your family. Thanks for sharing so openly about such a painful subject. Love, your lactation consultant.

Lindsey Erickson said...

Happy Birthday to Benjamin. How amazing to see how God has moved and changed and molded you more into the likeness of His Son in the past year. I am encouraged to know that Benjamin will be an instrument of that molding for many many years to come and to see the woman you will be then. You are amazing now, and I know He will continue to be faithful. God bless all of you.

becky bell said...

Thanks for sharing!

Happy Birthday Benjamin!

The Skinner 3 said...

Happy Birthday Benjamin! What a great essay. It has been so neat to see the Lord's hand on his life the past year. Selena

JILL said...

Happy Birthday, Benjamin! I know all your days are already filled with love - and I sure hope today is even fuller! I am really really looking forward to Mommy posting some photos of you eating your cake!
Angela, Thank you for your honesty and open nature. Cyber space has brought into my life and I can say, I am a better mom for knowing you and your boys.
Now - get those cake pictures up quickly, OK?

The Wood Family said...

Angela,
What an inspiring and honest testimony of God's faithfulness.

Happy Birthday Benjamin.

Caleb's Family said...

Thank you for sharing so sincerely, so openly and so honestly! You have a beautiful baby who is one! Happy Birthday Benjamin! His smile is so infectious- truly a blessing to see.

Karyn said...

Happy birthday Benjamin! Beautiful essay. I am totally right there with you about the sometimes feeling like mourning and then just then looking at my beautiful girl and finding peace.

Juliet said...

Angela,

Happy Birthday to sweet baby Benjamin! I love you and miss you so much! Thank you for all that you teach me. Love, Juliet

Mary Jo said...

1st I 3rd the statement "screw WW and have some cake!"
2nd - thank you for being so honest and open through this process. Really it has touched so many people. Those (obviously from the responses) that can identify with your April 24th and those of us that can only imagine, but have been inspired by your grace, strength, human-ness, faith, vulnerability and even humor through this journey. Benjamin has been a gift to all of us this past year. Thank you for sharing him with us. MJ

Adrienne said...

While I started my journey a little differently than you did and I still have a long way to go, I'll never forget the day I found out about our son. Such raw feelings you can have, you shared yours beautifully. I hope Benjamin has a wonderful birthday!!

grason97 said...

Oh Angela, I don't even know you in real life and I just love you. And I love your sweet baby Benjamin. Happy Birthday Buddy!!

grason97 said...

Oh, BTW...grason97 is me - Grace =)

Lillie's Mommy said...

Angela,
I still come to your blog on a regular basis to check in on your family. I too remember the day we all were waiting not too patiently to hear whether you were getting your Benjamin or Katherine. I remember the fear when we were asked to pray. And I remember the tears when we were told of Benjamin's diagnosis. I have kept up with his progress through your blog. He is a wonderful, strong blessing. God definitely has plans for his life. Thank you sooo much for being honest with all of us through this. It makes me admire you even more. I hope you both had a wonderful day yesterday.

Mom said...

Angela, I can hardly see as I try to type. As your mother, I can't express how proud I am of the strength God has given you as you and Matthew have lived this first year. I am prouder than if you had been elected to a high office, won an Olympic medal, or other wise have become famous or celebrated. To accept what God gives without resentment is the best trait you could possess. How many mothers wish their children could learn the valuable life lesson and be an inspiration to others as well? I feel honored to be part of YOUR family and associated with the Christian character it takes to happily raise Benjamin. He is so fortunate to have you and Matthew!

Little Miss E said...

What an amazing and powerful post! Would your family like to participate in the T21 Traveling Afghan Project? We would love to have you!!

http://thet21travelingafghanproject.blogspot.com

Bethany (LeMaster) Otten said...

Anglea- As I sit here with tears in my eyes and rolling down my cheeks... I can't quite find the words. Thank you for so openly sharing doesn't seem enough. Dave and I have been trying for 5 years for a baby of our own. At 36 I am realizing it may never happen, of allowing me to weep for my big dream of having a baby. Thank you for encouraging me in excepting God's will. Not that I've given up hope, but in my dark days I will remember your strength and courage, my sister in Christ.

Bethany

HomeSpun Threads said...

Angela, I have never read this before. My heart is broken at this moment. You don't have to publish this comment but I wanted you to know I'll keep you in my prayers everyday. I see you often enough online to never forget to pray for you and your family. When I was pregnant with Cooper, we had to go to a high risk doctor for my diabetes. During one visit, the doctor said..."his kidneys look dilated...that's usually a sign of DS." My mouth dropped open and he got up and walked out...for 4 weeks I looked up everything I could and wondered what was going on, was he wrong, what did God have planned? When I went back the following week, a different doctor checked the ultra-sound and I asked her about the comment the other doctor had made and she thought there was nothing wrong and that she thought it was normal for babies of a diabetic mothers to have dilated kidneys...why didn't he just tell me that before? I don't know but after that and a few other incidences with their offices wanted to quit going...Cooper was a preemie because they told me he wouldn't be early and took me off of my meds to keep from having him early. They were wrong...I had a friend who was told her baby would born missing part of her brain by the same doctors, and she wasn't. Are these works of God? Or are the doctors quacks? I don't know really. Only God knows what His plan is. I can't wait for Thomas to get here. I hope he'll be exactly what you expect and pray for! HUGS!

Rhonda said...

Angela, I can't begin to thank you for your story. It hit home so much. Our 2nd son was born on 12/7/09 and we found out on 12/8/09 that he has Downs. The emotions you described are the same ones we experienced and sometimes I feel like I am a bad person for having those feelings, but have to remind myself I am human. This is not what we expected or planned for but it is what God has laid out for us. You hope and expect healthy kids and sometimes we get the curve balls thrown to us. I just wanted to thank you for being so open and sharing your story!

Sherry C said...

I just came across your blog, I have a special girl myself and also and can relate all too well to your feelings. Good luck with your upcoming delivery of number #3 what a blessing

Shawn and Wendy said...

I just came across your blog & its nice to be able to relate to other people on blogspot! Its a really good place for you to know your not alone:) I wish you luck! Wendy

Karen said...

I just came across your blog, and I really appreciate your honesty and true openness to God's plan for your family. I definitely know what it's like to grieve for the baby/family you thought you'd always have. But I also can rejoice with you as I hold my precious baby that has totally changed my life!