If I knew then what I know now…

Yesterday (May 8) marks the one year anniversary of the day we got “the call”. The call that confirmed our unborn baby has Down syndrome. Our Down syndrome day. The day our lives were forever changed. One year ago we thought it was the worst day of our lives – the ending of our life as we knew it. Truth be told, it was just the beginning. The beginning of actually living life. A second chance to appreciate the world and all that is in it. My eyes were opened (and looking quite scared I’m sure) that day in May. My heart was opened October 25 when our little boy was born. Oh we are so blessed. So, so blessed.

Please note, our lives are not perfect. Not even close. Although I try to remain upbeat and positive in this blog, we struggle just as any family does. But, our challenges are not because Eli has Down syndrome. We have more bills than we have money. Our car is in the shop. Our toddler decided to throw an embarrassing tantrum in the middle of the waiting room at the doctor’s office. I’m sure those “problems” are probably similar to half the population. It’s called life.

We went to the beach this past weekend. The same beach that we went to last year that helped cleanse our souls and pointed us in the direction towards acceptance. To read about that trip (and the sad, overwhelming few weeks leading up to it) check out my very first blog post – ACCEPTANCE. This trip, I spent a lot of time reflecting. I thought about the scared woman who cried so many tears after receiving that phone call. The husband who physically and emotionally checked out for a week. The friends and family members who offered their condolences. The baby that was growing inside me, completely unaware that we were all so devastated. It seems like a lifetime ago. Yet I remember it like it was yesterday.

If I only knew then what I know now, I wouldn’t have wasted so much time grieving. I should have been celebrating. Rejoicing in the blessing that was being bestowed upon us.

If I only knew…
We are good enough parents to “handle” this. We can do more than we ever expected (and do it well!).

If I only knew…
I would be fortunate enough to meet a whole group of new friends, some who have become like a sister to me (and reconnect with many old friends throughout this whole process!).

If I only knew…
My baby will be cute. Quite possibly cuter than typical babies. 😊

If I only knew…
I will find strength in myself that I never knew existed. But, that strength will never compare to the strength I see from my child.

If I only knew…
Cody will be ok – even through four hospital stays, a host of health issues, doctor visits, and therapy all for his brother. He still goes to bed each night telling me he loves me and that I am his best friend.

If I only knew…
Eli will do things at an “age appropriate” level. And when he does fall behind on occasion, it is not the end of the world. (By the way – He rolled over for the first time this past weekend. He sat unassisted for the first time today!!!).

If I only knew…
Dreaming about his future is ok. He will have a future.

If I only knew…
Super heroes are real. My son proves it.

If I only knew…
I will love this child with every fiber of my being. I love him just as much as his brother (I really was once afraid I wouldn’t love him as much!).

If I only knew…
I will eventually forgive myself for the feelings I once had.

I took a bunch of pictures at the beach. Some of Cody, some of Eli. When Cody’s shadow joined him in a picture, there was only one. (I am referencing an amazing picture I posted in ACCEPTANCE). That shadow joined him in the flesh this time. I am still certain that extra shadow was his brother.

One year later I can tell you life certainly is ok. It is more than ok! Through our challenges and subsequent triumphs we, as a family, have made it through stronger, tougher, and more appreciative. Life is different. It is actually better than I could have ever imagined.
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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

An interesting day

Well yesterday was an interesting day. I went in for my weekly non stress test (NST). The reason I receive weekly ultrasounds and non stress tests is to monitor the baby and make sure he’s not under any distress in the womb. For whatever reason, it is believed that babies with Down syndrome are at a higher risk for late term loss or even stillbirth. That is one of the major benefits of getting a prenatal diagnosis – extra monitoring. Prior to yesterday’s appointment we had undergone two ultrasounds and one NST. In all of those Eli was a rock star. Yesterday, he was more like a rock star with a bad hangover.

For an NST they put two bands around your belly – one to measure the heartbeat and one to measure movement. His heartbeat was steady but he just wasn’t moving. They give you a little button to push every time you feel the baby move – I didn’t push it for at least a half hour. As I watched the monitor readout printing out I was becoming increasingly worried. There were no peaks and valleys, only valleys. (Picture a lie detector graph – the peaks represent movement, the valleys represent rest). They want to see periods of movement and periods of rest. These peaks and valleys show that his activity level is “normal”. The nurse came in and checked the monitor and decided it was time for baby Eli to have some sugar to see if that gets him active. If that didn’t work I’d have to go for an ultrasound immediately. Thankfully, the cookies and apple juice did the trick. After a few minutes he was rocking and rolling again. I pushed the button six times in one minute! The nurse and nurse practitioner (my OB is on vacation in the holy land celebrating his anniversary with his wife) were happy with his activity level but noted that I was having a lot of contractions (which I wasn’t feeling). She pointed out when I had one and my reply was, “Oh, I thought that was the baby moving – I’ve felt that for a couple of days.” Since I never went into labor with my first baby I had no idea what a contraction felt like. Oops. She decided it’d be a good idea to check my cervix and make sure it hadn’t started dilating. Luckily it was not. Her instructions to me where to go home, put up my feet, and relax. She must’ve not heard me earlier when I mentioned my very active 2 year old! As “luck” would have it though, Cody came down with a cold the night before and was not feeling well at all. He had a 101 degree temperature so he just wanted to snuggle and watch movies. My wonderful husband was home to take care of both of us.

Later in the evening I started cramping pretty bad. The nurse practitioner had said that if I experienced cramping that could not be relieved by laying on my side and drinking water, that I should call the dr. on call or go into the hospital for another NST. So I called the
OB on call. He said I had two options. Try to rest more and see if they subsided overnight, or come into the hospital. He did say that if I was to go into the hospital and was truly having contractions, he “would not take any heroic measures to stop them”. I explained to him that my baby has Down syndrome and a heart defect and his reply was “a 35 weeker is a 35 weeker” and that he would be strong enough to be delivered this early. I hung up the phone and told Chuck we would be staying put as I did not agree with that OB’s philosophy. Our baby needs to grow and gain strength as long as he can. He already faces challenges being born with DS and a heart defect. He does not need to add prematurity to the list! Chuck rubbed my back and eventually I fell asleep. I woke up cramp free and relieved (during one of my many trips to the restroom!).

Today I have felt a few contractions and a little cramping but nothing too alarming and it all eventually subsides. Eli has been active, in fact he’s kicking like a soccer pro as I type this! My OB does not return until October 12. He has been by our side throughout this entire journey. I need him there to welcome our very special son into this world. Prayers and good thoughts for Eli are requested! We are very excited and anxious to meet him but not until October 25th!

Feeling blue

If you read my blog because you like the inspiring, uplifting things I write about you may want to stop reading this post. Today is not one of those entries. Today I am depressed. I don’t know why. I’m feeling stressed and sad. I found the journal I kept for Cody when he was growing in my belly. I haven’t kept a journal for Eli. I started one, and then when we found out he had Down syndrome, I stopped. I was afraid he’d read it one day and think I didn’t love him. Actually, I was afraid he’d never learn to read or comprehend my words to him. I was looking back at what I wrote to Cody when I was 29 weeks (that’s how far along I am now with Eli). I wrote how I was so excited to meet him and couldn’t wait to hold him. I loved him so much already. Those words really hit me. In fact, they made me cry. I do love Eli. Very much. But I am afraid. I am excited to meet him and hold him. But I am scared. I am so fearful of what he will look like, what he’ll be like. Will he have complications because of his heart? Truthfully, I am worried. What if I give birth to him and love him so deeply and then God takes him from me? I am afraid to bond with him and I am afraid not to bond with him.

Last night, I got really sick. Scary sick. I thought something was wrong with the baby. But once I got in bed and settled in, Eli started kicking up a storm to let me know he was ok. I was thankful for that. I know I love him. Actually, I feel a deep love for him. I’m just so, so scared.

Everybody keeps saying how babies with Down syndrome are babies first. I have completely embraced that concept and sometimes I actually forget about the DS. But then I think about his heart. The most important organ in his body is broken. Yes, it can be fixed – with open heart surgery. My little fragile baby will have his body cut open so they can stop, and then repair, his heart. Ugh. Not fair. So is my baby with Down syndrome and a heart defect still a baby first? Or will his heart defect be the primary focus those first few months. Will we be afraid to love him with every ounce of our souls because we’re afraid he’ll be taken from us? I want to just love him and cuddle him and teach him and guide him. I don’t want to worry about all this other crap. I just wanted a healthy baby. But, I was given Eli. And I know I will see the blessing in that. I know we will fall head over heels in love. I pray that we will never feel the loss of a child and that that fear will not hold us back.

I saw a quote early on in our diagnosis that has been inspiring to me. It says, “I never knew I wanted a child with Down syndrome until I had one”. I hope in a couple of months to feel the same way. Until then, I pray that days like today are fewer and farther between. Please keep both Chuck and I in your prayers and good thoughts. I have a feeling the next 10 weeks may be filled with many emotions for both of us. Thank you. xoxo

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.

The meaning in a name

Many people have asked us if there is meaning behind Eli’s name. There is! When we first found out he was a boy we already knew he had Down syndrome. We knew he would be a special boy so he’d need an extra special name. We tossed around some names and then I counter referenced their meanings and if they were in the
Bible. Because we believe that God chose our son especially for us, it was important that our son’s name had a biblical meaning (if possible). The list we compiled was short. All were in the Bible but one jumped out at us. When I looked up Eli in the Bible I found that he was the priest who raised Samuel. When Samuel’s mother approached Eli she told him, ‘For this child I prayed;…’ (I Samuel 1:27). That one line screamed at us. I actually fell to my knees in tears. We DID pray for this child. God gave him to us with Down syndrome. He answered our prayers, we had to accept His gift, just the way he is.

In the baby name books Eli means ‘ascended’, ‘uplifted’, ‘elevation’, ‘high’, or ‘my god’ (apparently the baby books don’t agree on exact meanings!). We felt those were all words that would describe our boy. We will hold him up to God. He will uplift many.

If our baby had been a girl, she would have received my mom’s middle name as her middle name – Elizabeth. After we found out we were not having a girl, we still really wanted to be able to honor my mom in some way. ELI is the first three letters of Elizabeth (it’s the best we could do)! His middle name, Michael, is after my dad. Our firstborn son, Cody Charles, has Chuck’s dad’s middle name as his middle name (Leland Charles, he went by ‘Chuck’) so we always knew if we had a second son, he would be named after my dad in some way. Both men are/were very important and influential in our lives. Chuck’s dad taught him how to be an amazing husband and father. My dad modeled what to look for in a husband and father (Luckily, I found someone who is close to perfect at both in Chuck! 😉).

So there you have it. The meaning behind Eli Michael’s very beautiful name. The two people he’s named after, my parents, are wonderful people. I know our son will be just as wonderful. He’ll have their resilience, perseverance, and faithfulness. I know their grandson will constantly make them proud. In fact, I think he already has.

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Papa and Nana with Cody

Public awareness

Since our prenatal diagnosis, I have realized that people (myself included) aren’t familiar with the correct way to talk about people with a disability. We all know the ‘R word’ is not an acceptable way to describe anybody, even though it was once accepted in the medical field as proper terminology (and some old school doctors may still use it). Sadly, that word has been used by a generation of children and adults oftentimes to describe themselves when they’ve acted silly or made a mistake. I am guilty of using that word in that context in the past. Now, given the fact that we have a child whom this word once described, I find that word offensive and repulsive. It hurts my heart when I hear someone say it. Please remember that words do hurt, and many times you don’t know who you may be offending with those words.

A common term I’ve heard since starting this journey is “people first language”. That is the accepted way of describing someone with a disability. Put the person before the disability. For example; We are having a baby with Down syndrome, not a Down syndrome baby. Because I was unaware of this prior to our Eli’s diagnosis, I am sure many of you are as well. Here is something I found from the National Down Syndrome Congress website (www.ndsccenter.org) that I thought may be helpful:

LANGUAGE GUIDELINES

The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The “s” in syndrome is not capitalized (syndrome).
An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.
Encourage people to use people-first language. “The person with Down syndrome”, not “the Down syndrome person.” A person with Down syndrome is not “a Downs”.
Words can create barriers. Recognize that a child is “a child with Down syndrome,” or that an adult is “an adult with Down syndrome.” Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults.
It is important to use the correct terminology. A person “has” Down syndrome, rather than “suffers from,” “is a victim of,” “is diseased with” or “afflicted by.”
Each person has his/her own unique strengths, capabilities and talents. Try not to use the clichés that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that “all people with Down syndrome are the same.”

Here are some basic guidelines for using People First Language:

Put people first, not their disability
•A “person with a disability”, not a “disabled person”
•A “child with autism”, not an “autistic child”
Use emotionally neutral expressions
•A person “with” cerebral palsy, not “afflicted with” cerebral palsy
•An individual who had a stroke, not a stroke “victim”
•A person “has” Down syndrome, not “suffers from” Down syndrome
Emphasize abilities, not limitations
•A person “uses a wheelchair”, not “wheelchair-bound”
•A child “receives special education services”, not “in special ed”
Adopt preferred language
•A “cognitive disability” or “intellectual disability” is preferred over “mentally retarded”
•“Typically developing” or “typical” is preferred over “normal”
•“Accessible” parking space or hotel room is preferred over “handicapped”

Please don’t worry if you’ve used the “wrong word” or terminology around me. As I stated before, I am guilty of this as well. I am just grateful to know now and am hoping you will be too. I will be an advocate for my sons so that hopefully they won’t be subjected to hurtful words in the future.

Please don’t make me cry!

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Friendships

Wow. I am amazed, awed, and inspired by the outpouring of love and support my family has received. I recently posted this blog on my Facebook page. I was nervous because it was my first public acknowledgment of Eli’s diagnosis (besides on the Baby Center ‘Down Syndrome Pregnancy’ board). I wasn’t worried that people would be hurtful or rude. I was worried that people would feel sorry for us or be sad that our baby wasn’t going to be “perfect” (although I now believe our baby is perfectly what God intended him to be!). I didn’t want people’s comments to take me back to that overwhelming sadness we felt in the first moments/month after the diagnosis. I shouldn’t have fretted. I should have known better. The people I’m friends with on Facebook are friends from elementary school, junior high, high school, my one year of college. Friends that I’ve met through other friends, former co-workers, neighbors, family, and new people that I’ve connected with through this journey. Some friends I talk to daily, others I haven’t talked to in 20 years. The thing about it is, a true friend should always be a friend. A true friend is there to offer encouragement or a kind word when times are tough. No doubt about it, times are tough. My life has hit a bit of a rough patch. But, with supportive friends, family, and acquaintances, I will not travel down this road alone.

I have had the rare opportunity to gain perspective on some of my friendships. I am so lucky to have remained close to my same group of friends for 20+ years. Most in that group have rallied around me with offers of prayers, love, and support. Others have virtually disappeared. No phone call, text, email – nothing. At first I thought it was maybe because they didn’t know what to say to me. Then I realized that couldn’t be it. If you’re friends with someone for that long, you don’t need to know what to say. You are just there. To offer a hug. Say a prayer. Give a damn. I have been given a glimpse into the future. I have an idea who will still be my friends in 20 more years and who may not be. It’s sad, but it also may be a blessing.

I take it personally. I feel like my child is being rejected. The mama bear in me says that’s not ok. The last words I’ve spoken to a few of my friends was, “our baby has Down syndrome”. I never heard from them again. It’s been two months. I’m sorry to have turned this into a bit of a rant. I just saw such an outpouring of love and kindness from people I haven’t talked to in many, many years (as well as a couple of complete strangers!) that it became unacceptable and totally heartbreaking to me that a couple of “friends” have disappeared in all this. People keep telling me how many great new friends I’ll make on this journey. I didn’t realize I’d lose a couple of old friends along the way.

My son may have an extra chromosome than those of ‘typical’ children. That does not make him a monster. It may take him longer to walk and talk and throw a ball but he WILL do these things. And me and my friends will be there every step of the way encouraging him on to his next achievement.

To end this I’ll quote the classic tv show, Golden Girls: “Thank you for being a friend, traveled down the road and back again. Your heart is true, you’re a pal and a confidant”.

Thank you friends, new and old. Walk by my side and I’ll never leave yours. xoxo

Everything will be ok

So I’ve been struggling the last few days. I have this overwhelming feeling to pack up my little family and run – run far, far away. That obviously won’t fix anything since I’m pregnant and my worries are all about my baby growing inside me. I feel like I’ve been in denial. Like I’ve just been saying how accepting we are of this whole thing because that’s what everybody wants to hear. I want everyone to see how ok I am with all of this. And most of the time I am. But all of a sudden I’m filled with anxiety and fear again. What if we don’t have all the support we thought we were going to have? What if we can’t afford to provide all the care needed for our baby with special needs? What if…

On the beach last month Chuck and I promised to stay in the moment and not worry about the future so much. In theory, that’s a wonderful idea (and it’s worked thus far), but you can only ignore your fears for the future for so long. At first our fears were centered around the very distant future – Would our son live with us forever? Could he get a job? Get a high school diploma? Go to college? But then we realized we didn’t know anything about our Eli besides the fact that he has Down syndrome. Why worry about things we have no way to predict? We’ll do everything we can for Eli so he has the best possible life, and future. But now my worries are more centered around the next few years. Will he walk? Talk? Be able to feed himself? Will I have a
“toddler” for the next 5+ years??? I adore my oldest son, Cody, but we’re only at the beginning of the toddler stage and it’s challenging! I don’t know if I can do this for a few extra years, or worst yet, forever. I worry about how different our lives are going to be. I like our life now. I don’t want it to change drastically. What will that do to Cody? Will I be able to give him even half the amount of attention he gets now? I want to focus my energy on getting my baby well (he has a suspected heart defect – an ultrasound will either confirm that suspicion or give us great news on July 3rd). How can I focus on one child without taking my focus off the other? I’m sure this is a concern of many moms facing the birth of their second child. And I know it’s normal and obvious that the first child will not get all the attention of the parents anymore. But our case is different than most. What if Eli needs to spend extended time in the NICU at birth? How do we spend time bonding with Eli and keep Cody feeling secure and comforted? We are a very attached family. He’s never spent the night away from us. He’s only been with a babysitter (his Nana or his Grandma) a few times for a few hours. Everyone says how unhealthy that is for all of us but we just like being together. Now I’m scared that he will feel abandoned when Eli arrives.

I remember the overwhelming fear that hit me the night before my scheduled c-section with Cody. We were cuddling with our two dogs and I said to Chuck, “I don’t want our lives to change. I like it the way it is!”. I laugh thinking back to that night because our lives are so much better now! That next morning my heart exploded with love for my new baby. I have never experienced a love so great. I keep trying to remember that. I was fearful of change before Cody’s arrival. I’m fearful of the change that will occur with Eli’s arrival. Will it be different? Of course. But my heart has room for more love.

I’ve heard it said that once you receive this diagnosis for your child you go through a mourning period, grieving the loss of the child you thought you were having. Sadly, I am all too familiar with grief. I know it goes through stages. I know it comes and goes. I will not beat up on myself for going backwards in my grief. I know tomorrow, or next week, or next month my feelings will once again be different. I am so thankful we received Eli’s diagnosis prenatally. Many people have to deal with this roller coaster of emotions all while trying to bond with and care for their baby when they find out at birth that their child has Down syndrome. I can only imagine how difficult that must be. So, I am grateful to be able to go through this now, when Eli is completely unaware. I pray that when he arrives my heart will once again be exploding with love and everything will truly be ok.

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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