Why we chose to tell the world about the health of our baby even while it was still yet to be known if he has Down Syndrome or not.
Walking into the specialist’s office we weren’t sure what to expect. Already we were convinced that whether or not this baby has Down Syndrome (or another anomaly) everything was going to be okay.
In saying that, we also accept the fact that we’re not afforded the luxury in life of always knowing exactly how “okay” will be defined.
If we’re honest, we’d all admit that we want “okay” to mean what we want it to mean – perfectly healthy (in our case), rich, successful, popular, beautiful, the deal going through, the trip not canceled, the relationship mended… and the list goes on.
And yet we all know that that’s not always the case.
Sometimes “okay” means that a peace comes despite the storm, despite job loss, despite the heartache, despite things falling through, despite sickness or disease, despite unfaithfulness, betrayal, or broken promises. Sometimes “okay” means that we find strength and comfort, joy and blessings in the little things and in the unexpected places that serve as a much-needed oasis in our desert.
With that in mind, we headed to our follow-up appointment knowing things would be okay.
We didn’t know what kind of news the doctor would deliver, but we did know that we’d be okay with whatever he said. We had to be.
The ultra sound technician took a long time re-doing all of our scans. She meticulously looked over every bone and every organ, paying special attention to the brain, heart, and kidneys – the areas identified as problem areas just four weeks before.
She talked us through it all pointing out things of note and explaining what she was looking at, taking special care when looking at the heart. She was incredibly professional – not indicating concern or relief or any sense of emotion that would sway us one direction or another.
Once her examination was finished she took the results to the specialist, Dr. Watson, who also looked them over before coming to see us.
When Dr. Watson arrived (who had in a mere four weeks become infamous to us after being so highly spoken of among his peers) he greeted us and asked if he could do more scans.
Again he camped out around baby’s heart.
Over and over he looked and prodded and studied every valve, every ventricle, every little “inch” of our baby boy’s thumbnail-sized heart. Ryan and I looked at each other not knowing what his attention may indicate.
He soon told us that the concerns about baby’s brain and kidneys had disappeared but the marker on the heart remained. Then he went on to explain that even despite the marker still being there, the heart structure itself looked perfect and healthy and the flow and blood to and from the baby was as normal as could be.
He was very happy with how everything looked and we all breathed a huge sigh of relief.
Over the next several minutes he explained to us what it all meant and the possibility that our baby may still have Down Syndrome… or that he may be perfectly “normal”, setting our chances at 1 in 50 for DS. He also encouraged us with the fact that he’s seen these markers on babies several times when they haven’t led to such an outcome.
Next he offered us the option of an amniocentesis and left Ryan and I to discuss our next step.
Having one now would enable us to have the complete reassurance that baby is perfectly healthy… or allow us to hear a DS diagnosis ahead of time giving us some time to adjust and prepare ourselves mentally and emotionally before he arrives. But in addition to that, having an amnio now would also mean a 1-2% of miscarriage. If the membrane was to rupture at this point in the pregnancy the baby could not survive outside the womb. (I am now only 23 weeks along.)
The decision to have an amnio or not is a very personal one. Every family is different and there is no blanket answer for these sorts of decisions. As much as we’d love to be prepared in every way possible if something was indeed abnormal, for us the risk of loss – albeit low – is not worth the knowledge gained. If we were looking at something more serious (such as one of the fatal chromosomal anomalies) then our decision may have been different. But with DS being our “worst case scenario” at this point… we decided we just can’t bring ourselves to take that sliver of a risk.
We left Dr. Watson’s office that day the same as we came in – knowing that everything would be okay.
In reality, we don’t know much more about this baby than we did when we first went in. We don’t know if he will be born with an extra chromosome or not. But we do know that two of the three reasons for concern (the brain and the kidneys) have now dissipated.
We probably won’t ever know this side of heaven if that was just the natural course of life and development for the baby or if it was a miracle fueled by the grace released through hundreds and hundreds of prayers of both loved ones and strangers alike.
Some things aren’t necessary to understand in order to appreciate them… and this is one of those instances.
We thank God for every bit of good news we receive… regardless of how it came about.
Although no one has specifically asked, I’m sure some have wondered: Why would we share such personal news and struggle with the world… especially when we still don’t know anything definitively?
The answer to that is a simple one for us: We believe in the power of community, love, and prayer.
Too many people go through life suffering in silence. Too many people feel alone in their struggles. Too many people cover up problems for fear of appearing weak. Too many people tell themselves that their problems are “no big deal” when in actuality they’re dying on the inside.
Ryan and I feel that’s a tragedy.
Life is meant to be lived and shared and experienced. If we are real and transparent with one another, it gives others permission to be real with us (and one another) in return.
This has been evidenced countless times over the last few weeks as emails have poured in from friends and strangers around the world, not only sharing their support and encouragement, but also sharing their deepest struggles and heartaches with me.
These emails – your struggles – are as precious to me as my own.
Because in my own weakness I’m made so much more aware of the reality of others’ pain… and because we’re all in this together.
That, my friends, is called life. We need each other.
Vulnerability and openness within your own life invites vulnerability and openness in others. Everyone wants to be known for who they are… it’s just that sometimes people need a little encouragement to come out of themselves. There’s just nothing like making yourself vulnerable that opens the door for others to follow suit.
I’m not saying we should all air our dirty laundry for the world to see, or spend our days rambling on about problem after problem. But I am saying that to take the risk of opening your heart and baring your soul when it’s appropriate may just be the road to healing for many… often reaching far beyond your own self.
Because life is bigger than what we can see around us.
Because the world is a tiny, tiny place… and much more friendly than we often recognize.
And because choosing the perspective that the glass is half full always leads to being hopeful. (Which is a very nice way to live.)
So my family and I will continue to be open with our joys and struggles to the degree that we believe is appropriate. We are not superhuman – we are strong and fragile all at once. We need encouragement and we offer encouragement.
Life is meant to be lived together in community – and in our perspective that can include both people near and far, both known and unknown.
Life is also meant to be celebrated. Ryan and I share our journey because we want our precious son to be celebrated… whether he’s born with an extra chromosome or not. We love him and accept him and cherish him… and we want the world to do the same. But we’re also aware that sometimes a little time to process and pray can help people to accept challenging situations and free them up to celebrate along with us.
Because celebrate we will.
And celebrate we already do.
Dear friends, how are you living your life? Do you allow less-than-ideal circumstances to drive you into hiding? Or do you let them propel you toward the much-needed support of others?
Unashamedly seeking support,
Miranda12 June 2011 at 7:43 pm
Absolutely beautiful post. My prayers are with you and your little family, although I too believe like you that either way everything will be ok. Thank you for sharing this.
Joey12 June 2011 at 8:06 pm
We’ve been through (and still going through, to an extent) a difficult situation, although not as gut-wrenching as yours. Change of jobs and a big move (to an impoverished area) and leaving a church that I’ve been a part of for 15 years. It has been incredibly isolating.
God has been teaching us 2 big things:
1. Community IS important, as you say. Though we often have to work hard at it, and find it in different ways. (http://differentway4kids.blogspot.com/2011/02/two-ordinary-joes-at-lunch.html)
2. Even if all else (and everyone else) fails me, I need to draw near to God. When I’ve felt the most alone is when I sought my Savior the most.
What a great perspective you have, that no matter what season you are in, that you are able to both receive and give encouragement. “We are not superhuman – we are strong and fragile all at once. We need encouragement and we offer encouragement.”
Adriel14 June 2011 at 10:43 pm
I so know where you’re coming from. I got married, moved across the country, switched jobs (ministry), moved to a small town (from a big city which I love) and to a climate which is… less than desirable. New, new, new… hard, hard, hard. I’m normally a person that makes friends easily, adjust easily, etc. but this last move (over three years ago now) was the hardest one I’ve yet had. It was such a difficult time and I too felt very alone. My husband and my faith were my absolute saving grace!! I had to work hard at making community – around me and also more recently through this blog – and it has made such a difference. And yes, your number two is a given. A must. A life-line!!
Eleanor12 June 2011 at 9:24 pm
I just wrote a reply and it didn’t send…and I don’t remember exactly what I wrote!
But this post was perfect, I felt like you had read my mind!
So important to be vulnerable, open and honest – which can be so scary. Thank you for your honesty and openness and sharing your heart….you challenge me, encourage me, give me hope that things will be ok. That I can survive through the problems and not give up or run away (which I have been trying to do!!).
Adriel I will continue to pray for you and your family, have an amazing time in Sydney. x
Adriel14 June 2011 at 10:44 pm
Thank you lovely girl. I’m glad you are encouraged. But more importantly…
You are stronger than you think. x
Elina12 June 2011 at 9:43 pm
Thank you for being so honest. I agree with you. You’ll be in my thoughts and prayers
Amanda12 June 2011 at 11:15 pm
This is a most beautiful post. I have shared it in a link on my site. More people need to read this because it is oh so true. You will be okay. No matter what that okay is, it will be okay. And the most important part, is your little boy is healthy. His heart is good and that is awesome. You are an awesome mama <3
Rachel12 June 2011 at 11:52 pm
So many people (including myself) need to be given permission to be vulnerable. Thanks for allowing that.
Cari13 June 2011 at 12:07 am
Your post was beautiful. It brought tears to my eyes. AND YES, YES! If we are not here to support one another, pray for each other, love one another; what is the point so to speak. I have been following your journey, keeping your family in my prayers.
I have a 4 year old son with Autism, and I have found in my journey that parents of special needs children are the ones who can most allow themselves to be vulnerable and ask for help. They are the ones who can be strong enough to advocate for their child and give them unconditional love.
In having a child with a disability, it has made me slow down, breathe life in one moment at a time and be thankful. It has filled my heart beyond measure, and I’d do it again in a heart beat. It has been more of a gift and blessing, despite the hurdles.
Stay strong, lean on friends, family, and your bloggy friends too:)
Adriel14 June 2011 at 10:46 pm
Yes Cari, it can be so hard to learn to ask for help. It’s been a journey for me over the years to the point were it comes fairly naturally now. But it certainly hasn’t always been that way!! I can only imagine how having a child with special needs would force you to fast track in that process!!
Nicole13 June 2011 at 12:31 am
What a beautiful post. Your words are so very true. I love your honesty and how you embrace life. I’m a glass half full type of girl myself. No matter what the end result you will be okay. You will have a beautiful baby boy whom you will love. You already have the strength and support to get through anything.
Im so glad I just found you blog. We have a very similar outlook on life and similiar blogs. I cant believe it. I actually just recently started working on a project to get childbirth kits to mothers in Uganda.
You are in my thoughts and wish you and your family well!
Adriel14 June 2011 at 10:49 pm
That’s wonderful Nicole! Amazing how something so simple can help change lives. Love that you’re working to get birth kits to Uganda. Beautiful Africa needs healthy mamas and babes!! Yay for using our resources to make a difference where we can. x
Cameron13 June 2011 at 2:42 am
I just think this baby is so blessed to have two really wonderful parents. No matter what, it will all be okay because your family is clearly very strong. With your community, love and prayer, you can make it through whatever is going to come. I’ll keep praying for you all!
Ashley13 June 2011 at 3:36 am
Thanks for the post Adriel, that was beautiful. xo
Hillary13 June 2011 at 4:46 am
This post has me near tears – so beautiful, and so humbling. Your little boy is as precious as they come and is so incredibly BLESSED to have amazing parents that can take a step back and see the whole picture. I’m praying for you all and thinking about your sweet little one.
Laura13 June 2011 at 9:28 am
Adriel, this post was so wonderful. It’s so true – the more we open up to those around us in our time of need, the more love and prayer and support we allow others to help provide us.
Though I try to live life in an open-book sort of way, I’ve found that some of my deepest struggles I’m more closed-mouthed about. I’m not really sure why; maybe because admitting those out loud make them more real or more serious. Or because they’re hot topics where everyone has an opinion. But I have my one BFF with whom I share everything, and she provides that support without judgement or opinion.
Adriel14 June 2011 at 10:53 pm
Yes Laura. I think we all have to learn how to be open and vulnerable, but that doesn’t mean we should throw wisdom and discretion out the window! The challenge is discerning when and what to share isn’t it? I’m so glad you have a BFF that you can trust with your deepest darkest. Everyone needs those like that to turn to. And yes, I do think getting things out in the open make them more real… but I also think that making them more real – though painful – also makes them more addressable, copeable (yes, I made up that word), and more overcomeable (yes, another made up word). 🙂
Jill13 June 2011 at 10:42 am
Your baby is truely blessed to be coming into a strong and loving family such as yours. You will take things in stride and know that your family is loved and happy. This was a wonderful post and you have a wonderful family. I will be sending more prayers your way.
Wendy13 June 2011 at 11:39 pm
You have handled everything with such grace and strong faith. I admire you for it all. Thank you for being so honest with this delicate situation. Praying for you!
Courtney @ The Mommy Matters14 June 2011 at 2:00 am
I am so thankful to hear that you were able to get SOME sort of relief after your latest appointment. The odds seem to be in your favor, and that’s so amazing. Rest assure that you guys are all still in our prayers, and that we will continue to pray without ceasing for you and your growing little baby. I do have to admit, that I would have probably made the same decision about the amnio that you did. That risk is 1-2% too high for me. Plus, I think that knowing what one of the possibilities is, you will still be prepared if that is the outcome when your baby is born. You and your husband are fantastic parents, and your kids are lucky to have you. 🙂
Stephanie14 June 2011 at 3:07 am
Thank you again for your honest words, and your tender sweet heart. Praying for you and your boys, may you know, feel, and breathe HIS deep peace.
Micheline14 June 2011 at 4:22 am
Yes, thank you for sharing your experience here and for reaching out. I too believe in the power of community and not enough people reach out when a little extra help is needed. It’s refreshing. I know that this baby boy has been blessed to enter your family. He is so lucky.
Jill14 June 2011 at 12:11 pm
So beautifully put Adriel. Thank you for sharing such a personal struggle with us; may all of our blessings flow to you and your little family.
Katie15 June 2011 at 7:07 am
I read your previous post and was just blown away by your openness and honesty in this difficult situation. I admire your and your husband’s acceptance of things you can’t chance and your reliance on and trust in God that everything will be okay, even if it’s not our definition of “okay.”
Thank you for sharing and encouraging others to share struggles. So often we feel alone in our situation only to later discover so many others who went through the same thing. We could have had the support, prayers, and encouragement from others, but were too afraid to share what we were experiencing, whether from embarrassment, shame, or fear. You’ve inspired me to write more openly, particularly about those more personal life experiences!
My prayers are with you and your family and your growing little baby boy!
Adriel16 June 2011 at 4:49 pm
Yay Katie. 🙂
Jessica15 June 2011 at 11:08 am
Love this post and am so happy to hear the good news! Approaching this and any other struggle in life with the idea that “no matter what, I will be okay” is key. I made it through a lot in the past few years of my life, a lot of heartache, a lot of stress that I survived because I knew that no matter what, so long as God has given me another breath to breathe, I will be okay. I will get through this and anything else. I try to live my life as openly as possible because I have seen the devastation that comes when trying to hide one’s pain from the rest of the world. I have learned so much from others’ vulnerability and hope that others can learn from mine. We are all human, we are all in this together. By letting our guards down and speaking to each other, we gain so much from each other, see so much in each other, I think. I’ve gone on long enough, so I’ll stop here, and end with saying again that I’m happy to hear that you and your family are doing okay.
Adriel16 June 2011 at 4:54 pm
Well said Jessica. Truly.
TVs Take15 June 2011 at 11:05 pm
Wow, so sorry to hear about all your going through. Yay for the good news you received and hope that your baby is born perfectly healthy. Sounds like you guys have the right frame of mind, what a gift for that baby. Sometimes I think oh I just need to get pregnant one more time, then I’m reminded that pregnancy can be just as hard as getting pregnant. Best of luck!!!
Laura15 June 2011 at 11:45 pm
There is so much I want to comment here. I want to say how beautiful this post was written. I want to confirm that everything WILL be okay. I want to share our story of pain, fear, and relief when we encountered the same markers on the heart in our ultrasound.
Instead, I will thank you for writing this, for encouraging community and support, and I will let you know that I am praying for you.
Adriel16 June 2011 at 5:01 pm
Thanks so much Laura. I’m so glad that everything with your baby was ok. 🙂
Angel15 June 2011 at 11:47 pm
I read your first post about the news you received and felt my heart squeeze for you. I wanted very much to comment, but couldn’t find words. I didn’t want to say sorry, because it really wasn’t a sorry situation. A baby, any baby, is a gift. Your outlook on this whole thing has been beautiful, and so amazingly grounded. Thank you so much for sharing. You and your wonderful blog have a special place in my heart. I absolutely love seeing your little guy grow through your pictures, and reading about the happiness you have found, it gives me hope. I don’t comment as often as I would like, my own toddler keeps me running, but I always visit. You and your husband are very special people, the work that you do is truly inspiring. I think any child would be lucky to have you both as parents. Thank you again for sharing.
Adriel16 June 2011 at 5:38 pm
Thank you Angel, for your kind words. You are so sweet and I am very blessed to have such supportive and wonderful readers! Thanks for your encouragement. xx
casey26 June 2011 at 11:55 pm
beautiful beautiful post. Vulnerability def. allows us to be able to reach people who we might otherwise miss the opportunity to connect with. God has allowed my hubby and I to reach people in this long season of health battles, and mental illness that we never would have if we stayed silent like many prefer to. Your openness is a blessing to me. Your words are going to give others strength and will encourage so many!! Praying for your little man in your tummy. Praying for your awesome family! xo
An update on our precious baby boy « the bookers in missions9 July 2011 at 11:01 am
[…] Strong and fragile, we will be okay: Why we chose to tell the world about our baby’s health while it was still yet to be know if he has Down Syndrome or not (This is the follow-up post after our visit with the specialist.) […]
MarieElizabeth22 July 2011 at 12:52 pm
So beautifully written, that baby is so lucky to have you for his family. Prayers coming your way that everything continues to be okay, because it will be.
Warren Baldwin29 July 2011 at 1:42 am
Linked here from Amy’s where she had a link posted of this article. She wrote that you weren’t afraid to tackle difficult issues, and she was right! I appreciate what you had to share. Also esp liked your comments about suffering in silence, and how we don’t need to do that. In the Christian community we have others who care and can/will help.
And praying for your baby.
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