The One

April 30, 2012 was the last day of my former life. On May 1st we received a phone call telling us the baby I was carrying had a 1 in 3 chance of having Down syndrome. That meant out of 3 pregnant women with the same prenatal testing results as mine, 1 would have a baby with Down syndrome while the other 2 would not. I was stunned. I was confused. Angry. Scared. Sad. Devastated. Name a negative emotion and it is highly likely I felt that. I cried. A lot. We prayed every day that our baby would not have Down syndrome. That we wouldn’t be the 1.

As you all know, we were the 1. Our baby does have Down syndrome. 365 days ago I thought that meant I was the unlucky one. You know who is unlucky? Those other 2 women who don’t get to experience the overwhelming love I feel when looking into my son’s beautiful almond shaped eyes. Those 2 aren’t lucky enough to be a part of this oh so special club I’m a part of now. They didn’t get the opportunity to “meet” new friends and develop amazing bonds with people who share in a kinship like no other. The other 2 weren’t lucky enough to be shown the world from a totally new perspective. A kinder, gentler, more accepting, less judgmental way of life. The colors that surround my world are more vivid now. My eyes have been opened. I am the lucky one.

I am no longer sad, scared, or angry. Those feelings have been replaced with happy, hopeful, and joyful. This time last year, I was just going through the motions. Now I try to truly live and appreciate this life. My life. The one God has mapped out for me. For us. For my family. Sure, it hasn’t been all peaches and cream. Eli has not had an easy start. But his strength inspires me on a daily basis. I witness his perseverance. He amazes me. I have learned so much from him yet he is only 6 months old. I am so excited for the road ahead of us. Yes, it is the road less traveled – but I am one of the fortunate few who get to go on this journey. Yep, I am the lucky one. 20130502-010916.jpg

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Being old isn’t the “cause”

Over the weekend I was taking a walk through our neighborhood. I ran into a gal that also has a toddler. We were talking about our kids and then she asked when I was due. Somehow the fact that she was a special education teacher prior to her having her child came up. Because of this, I felt comfortable telling her that my baby has Down syndrome. Her response wasn’t what I had expected from a former special educator. Those that I have told in the past have acted almost like I told them my child will have red hair – no biggie. She, on the other hand, gave me a sympathetic smile followed by an “oh, how old are you?”. Um, excuse me? The question caught me off guard so I actually fumbled over my words when I responded with, “36 at delivery, 35 at conception”. She then went on to tell me that her and her husband are trying for their second child and because she’s 37, Down syndrome is a big concern. I informed her that anyone can have a baby with
Down syndrome but the odds are always in your favor to not. I wished her luck and continued on with my walk.

Quite honestly, that conversation pissed me off. I hate having the misconception that because I’m of “advanced maternal age” I caused our baby to have Down syndrome. I feel like people might think it’s my fault and that I was just lucky with my first – I shouldn’t have pushed the envelope. That we “deserve this” because we’re “old”. The whole thing really upsets me. To think that there was anything that I could’ve done to “cause” Eli to have Down syndrome devastates me. People have actually asked me if there was any way we could’ve “prevented this”. Uh ok. That question usually doesn’t even get a response. What do you say to complete ignorance? (That reminds me, I need to come up with a witty response to that question!) 😉

I do want to help spread the word that Down syndrome doesn’t just happen to babies of “old” parents. (I keep putting that word in quotes because I don’t think 36 is old and I certainly don’t feel old!) Ask the gal who at 18 is due with her first baby girl, who has Down syndrome. Or the 25 year old mom who just had her third boy, who happens to have Down syndrome. Or the 27 year old mom who underwent fertility treatments before becoming pregnant with a baby who also has that extra 21st chromosome. There’s many other stories out there like that. One of my fears for the future has been the stares my baby will receive and then the look up at me to see if I’m an old lady who was out of place having a family at this “advanced maternal age”.

Here is some information I pulled from the March of Dimes website:
At age 25, the risk of having a baby with Down syndrome is 1 in 1,250.
At age 30, the risk is 1 in 1,000.
At age 35, the risk is 1 in 400.
At age 40, the risk is 1 in 100.
At age 45, the risk is 1 in 30.

Even though the risk is greater as the mother’s age increases, about 80 percent of babies with Down syndrome are born to women under age 35. This is because younger women have more babies than older women.

When I first was given odds (before any blood tests or ultrasounds) they were 1 in 800, just based on my age and previous healthy pregnancy. Even though my risk went up with age, I’d bet those odds in Vegas – as would most people. When our odds went way up to 1 in 3 (after the prenatal testing) I still would’ve taken those odds. There was a 66% percent chance our baby would not have Down syndrome.

Down syndrome can affect any family. 1 out of every 800 babies born in the US has Down syndrome. That’s 3,400 babies a year. That number would obviously be higher if less people chose medical termination when faced with the prenatal diagnosis. Come October, our family will be blessed with one of those 3,400. When you meet me out on a walk/at the store/playing in the park with my two beautiful boys, please don’t ask my age. Please don’t ask what I did to “cause” this. I ask you not to judge my child and I beg you not to judge me.

Having faith

The day we received the news that we had a 1 in 3 chance of our baby having Down syndrome we went to see a genetic counselor. On the way home, we passed a small country church. On the sign of the church is a small reader board that they change with different quotes, bibles verses, or community events. On that particular day, the quote spoke directly to us and our situation. It said, ‘FAITH: Confident in hope and certainty in the unseen.’ Those words got us through the endless wait to find out the results of the blood test. Back then, I took it to mean that if we just had faith our baby would be ok. Eight days later, on the way home from the appointment where we discussed the phone call that confirmed we were the 1 in 3, I saw the quote and burst into tears. Were we not filled with enough faith? Didn’t we have plenty of hope? Was this our fault?

I passed that sign the other day coming home from the park with Cody. Two and a half months later it is still the same quote on the reader board. This time, I looked at it and smiled. We do have enough faith and we are ‘confident in hope’. That is why Eli was chosen for us. That quote speaks more to me today then it did then. We have ‘certainty in the unseen’. We are certain for our love for our child and we have faith in our future as a family.

No Judgement

Please don’t judge me. I have been sent on a journey that I pray others will never have to go on (but I know some will).

Something this experience has taught me is to judge less. I’ve always been a pretty judgmental person. Although, in talking to others, I’ve realized most people tend to be pretty judgmental too. I guess that’s just the way society is. I’m hoping to change and live my life in a less judgmental, more accepting way from this point forward.

When we first started the process for prenatal testing we honestly did it just to get the better ultrasound to find out the gender (you do all the prenatal testing at a specialist office that has fancier ultrasound equipment). At our first ultrasound appointment with Dr. Case (our amazing Radiologist) he mentioned that our baby’s nuchal translucency fold at the back of his/her neck (we didn’t know he was a he yet) was measuring “a little high but not out of the normal range” (it was 2.6 – up to 3.0 is considered “normal”). That put my odds of having a baby with Down Syndrome at 1 in 220. He said they’ll know more after the blood work but that he was sure it was fine. We mentioned that it didn’t matter to us either way as we’d keep our baby regardless.

Fast forward a week or two (at this point, timeframes are a bit of a blur) to May 1. We received a call from the genetic counselor saying that the blood work came back abnormal and that the odds of our baby having Down Syndrome were now 1 in 3! Um, what?!?! I didn’t expect to hear that. I was hysterical. Chuck came home from work and we made an appointment with the genetic counselor right away. She informed us that 90% of Down syndrome pregnancies end in medical termination. 90%?!?! What?! I honestly didn’t think it’d be that high. We stated that we would not be choosing that path but then again we did not have a positive diagnosis as of yet.

We wanted the opportunity to prepare if our child did in fact have Down syndrome, so we opted for further testing. We decided to do the new MaterniT21 blood test. It’s a less invasive alternative to an amniocentesis with the same accuracy. We waited 8 very long days for the phone call from the genetic counselor telling us the test was positive. We set a meeting with her for the next day so we’d have a day to process the positive results. I honestly don’t remember what we discussed at that appointment besides the “decision we were facing”. I wish I could say that we were still as adamant about loving and keeping our baby regardless of diagnosis but as you may have read in the previous post, we were devastated and grief stricken. I was hung up on that 90% number. I asked every doctor we met with why it was such a high number. Each had different answers. One said it was based on geographic location. Another said it was based on ethnicity. One said it wasn’t that high, maybe only 60%. Honestly, I don’t think the study that put out that 90% number is very accurate, but I personally haven’t taken any polls.

My point in all of this rambling is that you cannot, and should not, make judgements unless you’ve walked in someone’s shoes. The decision to keep our baby was the hardest decision I hope we ever have to make (but I’m guessing it won’t be the last of hard decisions we will have to make). We had to think about the quality of life for our baby, for our older son, for our family as a whole. We had to think of the financial aspects and whether or not we were emotionally capable of caring for a child with special needs. Our choice was one in the minority. We know this child was sent to us because, even if we don’t have faith in ourselves, God has faith in us. We have accepted the challenge, but many people do not. And regardless of your stance on abortion (pro choice or pro life) those people should not be judged or looked down upon. Just like we shouldn’t be celebrated for choosing the opposite. For parents, who are in the midst of a planned and wanted pregnancy, having to make a decision like this is cruel and unfair. We spent many sleepless nights wondering, thinking, worrying, debating – as I’m sure most parents who are faced with the same decision do. Many people know right away what they’ll do. Many people think they know what they’ll do. We knew, but we had to go to the depth of our souls for confirmation.

We are grateful for our little boy, extra chromosome and all. We can care for our son and provide for him. We know that our family will be whole with him. Will we face challenges? Most definitely. But we will face those challenges the same way we’ve faced other challenges in our lives – together.

Acceptance

May 8, 2012 at 1:15pm our world changed forever. We got the call from the genetic counselor that we had been dreading. The baby I have been carrying for 15 weeks, is not healthy. He/she has Down Syndrome. What?! How can this be? I’ve done everything right. I don’t drink, smoke, take medicine, eat foods I’m not supposed to. Why me? Why us? Cause I’m old? But I’m not old! I’m only 36. What will this do to our family? I’ve gotten mad, sad, anxious, confused. Will I be able to love this baby? What does their future hold? Bullying, dependence, frustration? What does Cody’s future hold? Constant defending? Other peoples intolerance? Jealousy? What does our future hold??? I can’t even go there right now. Everyone assures us that they’ll love the baby regardless and that they’ll always be there to support us. Will they? Will we? Can we? I have felt thoughts that I never thought I could feel about my unborn baby. Those thoughts make me angry, sad, and feel very un-mommy like. I’ve prayed for forgiveness of those feelings. Can I handle this? Can Chuck? Will our marriage survive? Is it worth risking? Right now, I don’t know the answer to those questions. I pray for clarity, for love, and for acceptance. I pray for peace. I pray that everything will just be alright.

I wrote that journal entry a few days after we found out that our baby has Down syndrome. It makes me sad to read it now. I felt so out of control. So desperately trying to understand what was happening. I’d go to sleep and wake up not remembering if it was a dream or real. I would pray it was a dream then remember it was not. We cried a lot. We stopped praying. We felt betrayed by God. We worried and worried and worried. We grieved for the child we thought we were having and didn’t know if we could ever come to terms with the child we were given.

After three long, insufferably challenging weeks my eyes were finally opened when my OB doctor (of all people!) quoted the bible during an appointment. Jeremiah 1:5 “Before I formed thee in the belly I knew thee;…”. All of a sudden, it all made sense to me. We were chosen by God to be this child’s parents. He knows we are capable of loving this child unconditionally. He picked us for him and him for us. I walked out of that appointment knowing everything would be ok. There was a feeling of calmness and acceptance that was such a new, welcomed feeling for me. Chuck still wasn’t there. He was still depressed. I feared he may never get to a point of acceptance like me. What if he never did?

A few days later we named our son. Eli Michael. There is a lot of meaning to his name that I won’t go into right now. But now our baby, our son, had a name. He was real. No longer just a scary diagnosis to us. He became ours.

We spent the following weekend on the Washington coast. If there’s a wonderful place to reflect and gain insight, it’s the beach. We were surrounded by peace. We were filled with love. As we took pictures of the three of us on the beach I had an overwhelming feeling that our family was going to be what it was meant to be. The four of us. Me, Chuck, Cody, and Eli. A family that was chosen. I took a picture of Cody playing on the beach. When I looked at the image on my camera I could not explain what I saw. Instead of one shadow standing with Cody, there were two. I just knew it was Eli. I just knew we’d be ok. That weekend was the best weekend of our lives (so far). We both accepted the child we were given. Not only accepted, but embraced.

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