Email 2: A (Big) Tiny Update (Clever title brought to you by David!)

Over the last few months, we have been sending emails out about Tiny to our family and friends. We decided now to post them on this blog as well. That way, this space can become a bit of a time capsule of the story God has written in our lives over the past few months. 

Below you will find the second email that was sent.

Written November 10, 2015:

Dear ones,

I'm sorry I've kept you all in waiting for the next update. I had plans to write this email Friday evening, but then my Dad ended up back in the hospital with some complications from his surgery (earlier in October he had a quading accident and sustained internal injuries which they had to repair with surgery a few weeks ago). He ended up in emergency over the weekend and getting admitted so they could keep an eye on a few things, which fortunately sorted themselves out. So needless to say, not much about the past few days has gone according to plan for us or for my side of the family. You can add my sweet Momma and resilient Daddy to your prayers. It's mind boggling to me how family emergencies like this just wipe you out... If pregnancy alone doesn't make you feel like a walking zombie, all this 'extra' has only added to it and I'm oh so tired. Not dangerously tired yet... But definitely monitoring myself for it. We have mostly good news about Tiny, but this emotional and spiritual journey, the appointments, the explaining to strangers, etc.... It all just takes its toll. So I'll just start by saying that you can please pray for me, for David, for Tiny, and for my Mom, Dad, brothers, and extended family too, as we all navigate recovering from October with all of this uncertainty and trips to the hospital and moments where we all just need a big ol' hug. We're all going through our own stuff based on the past few weeks and it's been rough. Dad went home from the hospital Monday afternoon and hopefully things will be a bit more stable going forward.

Now... Here's the part you've been waiting for. The first prayer God answered when we saw the doctors on Wednesday morning was that the nuchal fluid at the back of Tiny's neck has not grown. YES!! I believe that is a miracle in itself since all the doctors told us it was not likely to decrease. However the doctor we saw most recently said that it has gone down compared to the size of the baby. This means there is a much smaller chance we could lose the baby before our next appointment at 18 weeks. We were of course thrilled to hear this!!

The second prayer God answered begins with a young girl around the age of 13 or 14. This young gal was at home alone one day watching TV. Out of the blue, a commercial promoting Down's syndrome awareness came on and all of a sudden she found herself crying, unexpectedly drawn towards what she was seeing with more than just sympathy or compassion... but with submission. Doesn't that seem such a funny word for such an occasion?! But yes, submission. She hadn't really had many encounters with people like this, but she knew about Down's syndrome and some of its characteristics. However seeing this commercial, she knew something had shifted in her, something that couldn't be unseen. She was being pulled towards this, but there was willingness.  It was heartbreaking at her tender age but it was beautiful; and I believe it was God's special way of preparing this young girl for what might lie ahead.

You may have guessed by now, but that young lady... Well, it was me. Some might speculate and say that was just a coincidence or a projection I was making in a hormonal teenage moment, but I believe that it was the Holy Spirit. The best way I can describe it to you is that I felt God gently place a burden, a willingness, a desire even, to be a mother to a special child with Down's syndrome one day. It felt like He was preparing my heart for a journey I wouldn't walk for quite some time, but He planted a seed--a dream really--and I've hung onto it in the back of my mind ever since.  I remember feeling terrified, excited, confused, and blessed all at once. It was just a special moment between me and God and I didn't tell a soul at the time because I sensed it was to be protected from the well-meaning rationalism of adults. It was too precious to be shared and potentially shattered. David was the first and only person I ever told before our journey with Tiny, and that was years ago. But now that our circumstances seem to illuminate the revelation I received that day, I believe it's time for the story to be shared.

So, back to the news we got. The context for what we were told at our ultrasound last Wednesday is that, at our first appointment where they told us about the issues with Tiny, Down's syndrome was the least likely issue they mentioned because our baby has a pronounced nose bone (which babies with Down's often do not). We were told that it was more likely to be a different chromosomal issue, and these other ones are typically fatal--even if the baby is born, it will often only live for a couple weeks at most. So that is what we were preparing ourselves for. But deep down, my most deep-seated prayer, birthed in the willingness God had planted years earlier, was for our child to have Down's syndrome and not something fatal.

On Wednesday, they took a preliminary look at Tiny's heart and the doctor told us that they detected signs of a large atrial ventricular septal defect (AVSD) which is most often consistent with Down's syndrome. It was the absolute earliest they could take a look at the baby's heart, so there are no guarantees, but we will have a full morning of appointments with an ultrasound, heart echo, and visit with a cardiologist on Wednesday, December 2.

When the doctor told us that it is looking like our baby has Down's syndrome at this point, I loved that my wonderful husband exclaimed "Awesome". I think that's kind of difficult for some people to understand, but when you're preparing yourself for death, and you are told that life is more likely instead, it's truly quite the feeling. We sobbed happy tears of relief that afternoon and felt blessed beyond belief that God had answered those hard, weird prayers for Down's syndrome. Now, it is not for sure Down's syndrome (there is still the possibility of other chromosomal abnormalities), and we might not know for sure until the baby is born, but we feel grateful God has given us this hope to hang on to until we know more.

So in terms of the news, we are doing really well. We're really really excited about Tiny, albeit nervous too, as this heart defect would require surgery/surgeries once the baby is born to repair its heart. These are fairly common procedures for babies with this defect, but as we have learned this past month, we know that all the hospital time and waiting and wondering will be difficult. And we're once again trying to find that balance between preparing ourselves for different expectations for life with Tiny, and still keeping all our hopes and dreams for this little one alive. What we do know is that, Down's syndrome or not, Tiny is going to change our lives for the better. In fact, Tiny has already affected so many people in big and small ways, and we are amazed at how this little life has already changed the world we know without even trying. But we are excited, thrilled, and honoured that if things keep down this track, God might have chosen us to be the parents to someone so special. I love that although people with Down's syndrome have challenges, just like the rest of us (only theirs are a little different), God allows these little ones to survive. Even with that extra genetic material, God allows them to live and enjoy life and bring the sweetest gift of their simplicity to those of us who get to know them... You know, the normal risk for someone my age of having a baby with Down's syndrome is 1 in 1000. I count myself blessed that the possibility of something so precious and rare might be growing inside of me.

The things that have been hard lately include the following: 1) Eating out a bunch (which we don't really have $ for) or eating not so healthily and on the fly because we're just too plain wiped to cook or we've been rushing to the hospital after work or just needing to be away from our house which is often a disaster zone more frequently these days. 2) One of my very best friends in the whole world is in Thailand right now, and if I had a fairy godmother, 100% my first wish would be for even 1 hour to hug, cry, and drink tea with this dear woman who is such a kindred spirit to me (you know who you are, and boy do I miss you). What's a girl to do when life is just crazy and your bestie is a million miles away? Thankfully she is as intentional as ever (huge part of why I love her so much) in reaching out and letting me know she's there but it's still really, really hard to walk through a personal crisis without your favourite girlfriend there to laugh, cry, and be puzzled and frustrated about life with, all in the sequence of an evening. 3) It's sucked that once in a while, people who we try to be real with about what we're going through, skip the listening and go straight to blabbing on and on about how "doctors don't know what they're talking about"  and "don't you know everything's going to be fine" and (though perhaps unintentionally) totally just shame us for not being zealous optimists. 4) Getting up and out the door has been hard for both of us lately. We're in this weird place of both being excited about things that are happening in our lives at work and with friends, but when push comes to shove, it feels like there's barely enough energy to get from the house to the train station in the morning, never mind having the energy to fully engage in executing our parts in these new and exciting developments. That feels super discouraging and frustrating. We're asking ourselves if we need to take time away from our responsibilities and so far there's not a lot of clarity cause gosh darnit, we can't just fly to Hawaii to pretend life isn't as exhausting as it is while sitting on a warm beach. What would we even do if we took a couple weeks to just press pause? Would it even be helpful, how do we carefully construct a plan for an actual healthy break, or would we default to watching Netflix, sleeping on the couch, eating junk, and then feeling absolutely miserable afterwards. So that's the other big prayer request, for clarity around this weird question that's constantly on our minds: do we need to take a break from life and if so, what does that look like?

Then there are wonderful things, songs that speak to us and quiet times in the morning where we receive a verse to carry us through the day, or we get to hang out with some of the people who just make our lives better. There are people who are wonderful, who email us, message us, call us, send us home with lasagna, or who give a warm blanket and a cozy chair to sit in and vent. We thank God for you people. We need you, now more than ever before. Please, oh please, keep at it.

You see, the last thing we want to include in this email is the part that we really need you to hear: Please keep reaching out. We may not have responded to your emails or texts, but we can tell you they meant the world to us that you sent them. We may not take your call cause we're eating dinner or in the middle of taking a moment for self care, but we need you to keep calling, keep emailing, keep texting, keep offering for us to join you for dinner or spend time with you. Please, please, don't stop. If we don't answer immediately, we might be in the middle of something and will call you back or return your email when we're ready. But please don't worry or fret about whether or not we actually want to hear from you... We do. We really, really do. <3

We love you all and appreciate you following along with us and Tiny!

XOXO,

Davelynn + Tiny

Email 1: An Update on Baby Robertson

Over the last few months, we have been sending emails out about Tiny to our family and friends. We decided now to post them on this blog as well. That way, this space can become a bit of a time capsule of the story God has written in our lives over the past few months. 

Below you will find the first email we sent out to our family and friends when we first got the news that something was amiss with Tiny. 

Written October 25, 2015:

Hello to our special loved ones,

By now you have all shared in our excitement that we have been given an incredible miracle of life and you know that a little baby is growing inside of me (who we have affectionately called Tiny)! Although it came as a bit of a surprise, we love this child so much already and are so thankful for all the love and prayers that have surrounded its little life so far.

On Thursday, we went for our 12 weeks ultrasound, and were pretty shocked when the nurse sat us down and with care in her eyes, told us they have some concerns. Our baby's nuchal translucency was measured at over twice what it should be for its stage of development. This is a pocket of fluid that builds up at the back of the neck, usually when something is not quite right with baby's chromosomes, heart, or other developmental problems that have occurred. And overall, its skin is filled with more fluid than normal (it looks puffy), which also concerns them. Combined with my bloodwork, this is usually an indication for some kind of chromosomal issue which can also lead to other problems with baby's organs. We were given a bunch of numbers and a bunch of options for different tests that can tell us with a bit more certainty what is wrong (if anything; there is still the possibility that our baby is doing just fine). Some of the tests are invasive, and increase the likelihood for miscarriage. We'll likely wait until our next ultrasound in 5 weeks and see if the fluid has gone down or continued to build up.  At that point, if still recommended, we will likely have a procedure done to tell us with more precision what is wrong (again, if anything). We are hopeful for a miracle that everything will turn out OK, but the numbers have shown that if things continue to look abnormal, there is less than a 15% chance that our baby will survive to term.

Over the next few weeks, there will be lots of waiting, big decisions to make, appointments to go to... Tears to shed, hugs to share, hope to blossom, and love needed. We are so thankful to have an amazing community of people in our lives who love us. Thank you to each of you for the role you continue to play in our lives.

We do, however, want to set a few boundaries in place. We know things like this can be difficult to handle... You might be wondering: What do I say? What can I do? Should I say or do anything? So we thought it would be helpful if we told you exactly what we'd love to see from you as we walk this journey.

1. Please listen. We don't need you tell us about the likelihood that nothing is wrong. Of course we are hoping for that and reminding ourselves of this, constantly. But Dave and I also need to take the time to prepare ourselves for the possibility that this pregnancy will not end how any of us had imagined. Just listening to where we're at is a huge gift you can give us.

2. What we really need is your empathy. What we really don't need is for you to add your own fears to the many we are already carrying ourselves. We know that this will affect each of you in different ways, and because we love you, we wish you didn't have to go through any pain either... We know so many of you are especially thrilled to be a _______ in relation to our baby for the first time, and so we hope you can find your people you can talk to in whatever way you process best. But when you talk with us, please remember that we can only carry so much. We are the ones most significantly affected by this, so we just ask that you keep that in mind as you respond to us with your own emotions.

3. That being said, please don't go away. We promise we'll tell you if we really don't want to talk about it. Otherwise, we've adopted what my Mom & Dad always said to me and Dylan as kids... We can talk about anything. I also promise you won't offend us by bringing it up; we'll feel relieved that you did and we didn't have to pretend everything is okay. And it's okay to ask us questions! If you want more details about what we know and what we're feeling, please ask. It helps us to process, too.

4. Lastly, please pray us through this. We know that your prayers have the power to help carry us in our moments of human weakness and worry. We believe miracles are possible and just want the Lord's will to be done for our little family, whatever that may be. We are grateful he counted us worthy of going through this experience, whether it turns out amazing or terrible. We so appreciate your prayers for us and for our little Tiny. 

Specifically right now, you can pray for peace in our hearts as we wait for more news. We have an appointment on Thursday afternoon with a genetics clinic who will give us more information on the specifics of their findings and the next steps to take. We also need prayer for guidance as we make plans... We don't want to stop making plans for Tiny to arrive, but we also know we have to plan for the other possibilities. Finding a proper balance in this confusing time has already been difficult and will likely continue to be.

We know that through this all, God has our best in mind, and so we look forward to what he is going to do in our lives.

Thank you again for being there for us through all of this. We don't expect a response from you, but also want you to know that we're happy to hear from you.

Big love to you all,

Katelynn & David

Happy World Down Syndrome Day 2016!

Hi everyone,

We want to wish you a most happy World Down Snydrome Day!! Since people with Down Syndrome have 3 copies of the 21st chromosome (whereas others have 2 copies), March 21 (3/21) has been chosen as a day to celebrate the wonderful people with Down Syndrome who grace our world. So happy celebrating from us and Tiny to you!

Last week, our brother-in-law who is quite the outdoors-man astutely illustrated the beauty and uniqueness we see in Tiny not in spite of, but because of, the fact that he/she has Down Syndrome... Here you see a photo of a serving platter made out of what he recognized as Western Curly Maple. It just so happened that the taco appetizer we shared at dinner last week was served on a platter made from this kind of wood, but it turns out there was something even more special about it! If you look to the bottom right of the ringed part, you will see there is a part of the wood that stands out and looks like sunlight radiating through water. Doug explained to us that this is called chatoyance, and it is an irregularity in the wood for which there is no known cause. Although it is irregular, it is this quality that makes the piece of wood so beautiful, valuable, and full of a particularly special kind of life.  Without the chatoyance, it would just be another ol' piece of wood. And so it is with Tiny; Down Syndrome, while an irregularity that often has no known cause, is not a deficiency in Tiny's life, but in reality only makes this little person all the more beautiful and special. For us, we see Down Syndrome as one small part of what makes our baby fearfully and wonderfully made and we rejoice in it! We hope you will join us, today and every day, in celebrating Down Syndrome and advocating for the amazing people on this earth who are gifted with it!

Fun fact about Tiny and Down Syndrome: Tiny actually has a more rare form of Down Syndrome known as "Isochrome Down Syndrome". This means that the third copy of the 21st chromosome didn't actually split off on its own, and so our little one still has 2 pairs of chromosome 21, but one of the chromosomes is extra long and contains extra genetic material. This makes no difference in terms of the outcome for Tiny and how he/she will look or act compared to babies with the regular form of Down Syndrome. It is just an extra bit of chatoyance that makes our baby so special. 

It's hard to believe that in 3 weeks we'll be moved up to Edmonton, and 3 weeks after that, Tiny should be making his/her arrival. We can hardly wait!!!

In love and celebration,

Katelynn, David & Tiny

P.S. Here are some of our favourite videos about Down Snydrome. We highly recommend you take a few minutes to watch them!

1) "Dear Future Mom" from World Down Syndrome Day 2015 (Grab Kleenex!)

2) "How Do You See Me?" from World Down Syndrome Day 2016

3) "Two Conversations That Changed My Life" TED Talk with Tamara Taggart, CTV News Anchor in Vancouver & Mother of a Child with Down Syndrome (I watch this video every few weeks because it is just brilliant)

Why This Blog? or, A Song for Someone

Hello, internet.

You might be curious as to why I decided to add one more voice to the cacophony of narratives we already wade through in the inter-web universe.

I can probably narrow the answer down to two reasons.

1) Someone tiny is changing our world as-we-know-it in a really, really big way. My husband, David, and I are (at the time of this writing) almost 6 months pregnant and anticipating a little person coming into the world who has several challenges it will face. We recently found out for sure that our baby has Down's syndrome, which doesn't change our love for our baby one iota. However, we know this will create some extra hurdles, as our baby is also faced with several heart defects that require surgery, and possible additional issues with its brain development. There are a lot of complex things happening in this one little person, so we are waiting to see how things grow and develop and whether the doctors think our wee one will be able to handle the surgery it requires or not. We are hopeful for miracles, healing, successful surgeries, and all the joys and struggles of adjusting to life with a new baby. And yet, we are mindful that our baby may not live very long if surgery is not an option. Whatever lies ahead, we are choosing to celebrate this little life while it is still with us, however long or short that may be.

So far, doing that has been an extremely painful, heart-wrenching and yet heart-filling journey. It is taking all we have, but we are doing our best to love our little baby we've nicknamed Tiny with all we've got, even though this doesn't make it any easier to face the reality of losing our baby. This fairly weird approach is not one we have been able to travel well without the aid of a loving God and a supportive crew of family & friends who are standing with us through it.

Personally, I find my greatest reflections come when I write them out. I do think I have some rather interesting thoughts from day to day, but  I am (generally) a terrible verbalizer when asked to say my thoughts out loud. To put pen to paper comes naturally to me and so, while I'm processing this journey myself through my writing, I know it has been helpful to some who have been in our inner circle so far to have insight into what we are thinking and feeling. We've been sending out emails after each doctor's visit to keep our dearest ones in the loop with what's been going on. I plan for these emails to soon be published on this blog space as well, which brings me to the second reason...

2) We wanna be real. Social media is an incredible tool at our disposal, but it's also a deceiving mask we can don to hide the truth of the painful, gritty lives we all live. I don't aspire to mill about pretending my life is any better than it actually is. We live in a great country, we have fantastic people rooting for us, and we serve a really big God who amazes us all the time. We are truly and richly blessed. BUT, we are not immune to suffering and I'd hate to add to the perception that, as some have wrongfully assured us, "good people like us shouldn't go through bad things like this". Well, that's a lovely thought... But it straight up just ain't true. Fantastic people, faithful people, passionate people go through struggles all. the. time. And I suspect that what usually makes these people so fantastic is their honesty about what it's like to go through the tough things.

So yes, part of the goal here is just to say: yes, we are going through yucky stuff, but we are also gripping onto the truth that good things can and will come from this.

One of the things that helps me see through the misery of going through this is that perhaps in some way, we can bring hope to others. For the first few weeks, we were completely shocked that two 23 year-olds could be receiving news that our first baby was likely not to survive. I wrongly assumed that this kind of news is only given to women who have babies later in life. I hope that in some small way, I can openly and unashamedly bring light to the fact that these kinds of complications can happen to anyone. It can be isolating to feel like you are the only one going through something like this, but that just isn't true... There are so many women who have come out of the woodwork and told me of the babies they were told wouldn't make it, or the babies who are waiting for their parents up in heaven.

It bothers me that words like miscarriage are still used today (seriously, why is there not a less shame-inducing word for it out there yet?). It bothers me that so many women deal with their losses related to pregnancy alone, and I don't think there are enough truly safe spaces for conversation about the reality that this happens to a lot of ladies in our world. And it bothers me that these things are so rarely talked about that a lot of people have no clue how to respond when news like ours is shared with them.

So with that in mind, blogging felt like a good avenue to pursue to help keep our friends and family in the loop, but also possibly reach somebody out there who needs to hear that they are not alone.

So, follow along as much or as little as you like. Who knows how long I will continue to write specific to this journey and what comes from it, or where this tiny blog will go. I'm just trusting my instinct and the Holy Spirit to take this wherever and to whomever it needs to go.

This is my song for someone.

(I leave you with a favourite from "The Rockstar" as my Auntie Lu affectionately calls our beloved Bono).