Where to begin...? Miscarriage is one of those things that you just don't know what to say, and that's ok. Even now, a few days beyond my very own, I still struggle to find words. It is something that is so very intimate, completely heart breaking and physically, emotionally and mentally taxing that... what do you say? Where do you begin? At this point, I don't know, so I'll start here:
Hi, my name is Nikki and I had a miscarriage. My baby should be entering its last week of the first trimester tomorrow, and instead it has been washed down the toilet... Literally. There was no going in after it, even though I did consider shoving my hand in for a moment. That was the most difficult flush of my life. I just kept saying, "I'm sorry, I'm sorry" over and over again as I forced myself to push that stupid little button. That was the last time I would have any physical, tangible connection to this being that never was.
You see, this baby never really "took off," if you will. While the scan (ultrasound) was unclear, the fetus most likely did not progress beyond just a few weeks gestation. Either that or something was so terribly malformed that it was incompatible with life. Whatever the cause, I knew in my soul from conception that the pregnancy just didn't feel right. Hearing doctors and midwives tell us something truly was wrong made it so much more real, though. Up until that point, I think hubby and I had held onto some little glimmer of hope that our instincts were wrong - and, the pure fact that we had made it to 10 weeks gave us more hope each day.
Week 10 began with absolutely no symptoms whatsoever. Pregnancy seemed a feeling of the past. No more morning sickness, sore boobs; I had energy again and wasn't my grumpy self like before. It was refreshing, although slightly concerning. But, I figured I would just appreciate the reprieve. 4 days later, I started spotting. Apprehension began to set in, as my body never ever spots... I told myself that plenty of women have spotting during pregnancy. It's probably nothing to worry about. But 36 hours later, when it wasn't getting any lighter, we booked a scan (ultrasound) to take a peak and make sure everything was alright. It wasn't. The picture was difficult to discern what was what, but one thing was for sure - things didn't look right. And, there was no heartbeat.
"Well, here we go," was what I thought to myself. "The day I have always dreaded is here." I've always felt/ feared that I would endure a miscarriage for some reason. So, there I was, living my nightmare.
Even though the news wasn't all that shocking, it still hurt. We couldn't handle our overwhelming emotions in the place where all of our responsibilities live, so we fled 2.5 hours north for the afternoon. Sometime during that drive, numbness set in. We were laughing, joking, not talking or thinking at all about the baby we were losing. It was weird. But good. I think that short escape helped prepare us for the mental, emotional and physical marathon we were about to embark upon. It took another 4.5 days of worrying, wondering, waiting for our babe to pass. We didn't know how to act, what to say, what to do... It was agonizing.
In a strange way, I felt relieved once the babe passed. There was no more worrying, wondering or waiting. It was done. I was free to grieve and accept that we would never hold this baby. One day we will meet in Heaven, but until that day, all I have to hold is a small, hand-carved lamb that called out to us in our favorite café the day we learned what was happening. For now, it will do, but I feel so empty. My body is returning rapidly to its pre-pregnant state and I can't stop it. Part of me wants to hold onto any remnant of this baby that I can, even if it's a couple extra pounds; but I know we need to move on in order to heal.
Right now, we own the grief when it comes, but we have this peace that I believe can only come from a higher being. It makes no sense for us to feel calm and peace just a few days after we lost a baby, unless you believe that there is a God. And, we do. We have seen His hand in every step of this heart breaking process. For example, Layna was quite sick last week, which meant that she just wanted to sleep and couldn't have cared less that we were in the car for over 5 hours the day we got the news. And, while her illness did add stress to our week, it gave us an "out" of things that we just weren't up for tackling, but also weren't ready to divulge the real reason. Her ever-evolving virus also brought up very necessary conversations at my work that may not have happened otherwise. The day of the scan, we heard that the owner of the house we rent had decided to reduce our rent by a significant amount, out of the goodness of her heart (she had no idea what we were going through). Just a few hours after our babe passed, hubby received his new work visa, meaning that he can now stay in NZ for the next year. And, most notably, the worst part of the miscarriage happened on a Sunday night, after Layna had gone to bed. Hubby was home and it was a night of the week when we had no obligations, so no one was asking why we weren't at this or that. We could just lay on the sofa together and let it happen.
The pain was so intense. There was so much blood. When babe passed, it was a bit traumatic the way it happened, as everything came at once. And, yet, I have smiled today. Not all day long, but I have smiled. Because my God is good and He works for the good of those who love him. He has provided me with invaluable friendships and family that carried me through this dark, confusing time. They picked me up when I could go no more on my own, gave me advice, treats, flowers and so much support. I wouldn't have made it through this in one piece without them and He knew that. He knows that. I worship a God who is all mighty, all powerful, all knowing. And, He will make good come from this horrible thing. I anticipate seeing how He uses this for His glory in the future.
Just to be clear, not feeling at peace or calm and more like a total mess when going through a miscarriage is ok. In fact, I think most would say it is normal. Grief and healing take on many forms, so there is no shame in not being "okay." If you're reading this and experiencing the loss of your unborn child, know you are not alone. I'm here for you. You can do this. It sucks. So bad. So, focus on what you can control and cling to those around you, because not going it alone is key. I send my love and hugs to you, friend.
Wednesday, August 17, 2016
Wednesday, October 28, 2015
My Child is Better off Dead
Doctors. Smart, well-educated people who take care of our bodies when they need it most. They help us feel better and can guide us in directions to better our health overall.
Today, though, I am angry. My hands shake and tears sit in the corners of my eyes because of a huge injustice that has been committed. An innocent, beautiful life has been lost due to doctors and nurses painting a hopeless picture of the future for this precious child. They failed completely to provide any positive knowledge or support or actual accounts regarding what a Down Syndrome diagnosis looks like in a person living with it today. At this couple's most vulnerable time, these people who are supposed to look out for us have only caused agony, regret and turmoil in the facets of mind, body and soul.
This cannot be undone. These parents will never know just how amazing their child could have been. They will never see their baby become a beautiful adult and achieve his/her full potential. They will never celebrate as their toddler reaches each milestone just like his/her brothers and sisters. Their living children will never know the joy and fullness that growing up with a child with special needs can bring. What a tragedy.
They are not the first to experience this injustice, and it happens every. single. day.
Doctors and nurses, I plead with you! Before you urge a parent to terminate a pregnancy with any kind of diagnosis, do your research! Paint a truly fair picture of what life might look like if they want to continue on with it. Also, offer support! Provide resources for the parents to contact agencies who advocate for people with special needs and who provide early intervention. Lastly, LEAVE THE DECISION UP TO THE PARENTS! This is not your decision to make. This is not your child to keep or abort. You will go home tonight to your own family and these parents' choice will not really affect much of your life beyond the short time you spend with them in your office. However, the outcome of the situation will have lifelong effects for the family. So, take the pressure off. Offer well-rounded information to help them sort out what they want to do, then sit back and let them work it out on their own.
People of the medical field, PLEASE realize how you might be causing parents who are already hurting even more agony and turmoil. By presenting one-sided, hopeless information and urging them to terminate without helping them understand ALL of their options, you might encourage them to make a decision they will regret for the rest of their lives.
Parents, if you are experiencing this very pressure and picture of a bleak, black future, know that there is another side to the story. Just briefly, I'll tell you that children with Down Syndrome can walk, talk, play, learn and socialize just like everyone else. Beyond that, they bring so much light to the darkness of the world that I have only ever seen in people with special needs. Our lives have been vastly enriched by our little Layna and we feel incredibly blessed by her presence. I encourage you to talk to someone else about what you are feeling in this situation. It can be a very lonely, confusing time, so talking about it can help straighten the jumbled mess of thoughts swimming around in your head. I, for one, would be more than happy to hear everything you have to say and open up to you and tell you how it is from my point of view - the good, the bad, the ugly and the beautiful. You won't feel any pressure from me, I promise.
In a time of ever-increasing acceptance and understanding of special needs, it pains and infuriates me that health professionals seem to remain in the Dark Ages when it comes to information on the quality of life of extra special people. Telling parents that their babies are better off dead is a lie. It's time to tell them the truth. It's time to change.
If you have any questions or have a situation you would like to discuss privately, my email is always open at mlitsblog@gmail.com :)
Today, though, I am angry. My hands shake and tears sit in the corners of my eyes because of a huge injustice that has been committed. An innocent, beautiful life has been lost due to doctors and nurses painting a hopeless picture of the future for this precious child. They failed completely to provide any positive knowledge or support or actual accounts regarding what a Down Syndrome diagnosis looks like in a person living with it today. At this couple's most vulnerable time, these people who are supposed to look out for us have only caused agony, regret and turmoil in the facets of mind, body and soul.
This cannot be undone. These parents will never know just how amazing their child could have been. They will never see their baby become a beautiful adult and achieve his/her full potential. They will never celebrate as their toddler reaches each milestone just like his/her brothers and sisters. Their living children will never know the joy and fullness that growing up with a child with special needs can bring. What a tragedy.
They are not the first to experience this injustice, and it happens every. single. day.
Doctors and nurses, I plead with you! Before you urge a parent to terminate a pregnancy with any kind of diagnosis, do your research! Paint a truly fair picture of what life might look like if they want to continue on with it. Also, offer support! Provide resources for the parents to contact agencies who advocate for people with special needs and who provide early intervention. Lastly, LEAVE THE DECISION UP TO THE PARENTS! This is not your decision to make. This is not your child to keep or abort. You will go home tonight to your own family and these parents' choice will not really affect much of your life beyond the short time you spend with them in your office. However, the outcome of the situation will have lifelong effects for the family. So, take the pressure off. Offer well-rounded information to help them sort out what they want to do, then sit back and let them work it out on their own.
People of the medical field, PLEASE realize how you might be causing parents who are already hurting even more agony and turmoil. By presenting one-sided, hopeless information and urging them to terminate without helping them understand ALL of their options, you might encourage them to make a decision they will regret for the rest of their lives.
Parents, if you are experiencing this very pressure and picture of a bleak, black future, know that there is another side to the story. Just briefly, I'll tell you that children with Down Syndrome can walk, talk, play, learn and socialize just like everyone else. Beyond that, they bring so much light to the darkness of the world that I have only ever seen in people with special needs. Our lives have been vastly enriched by our little Layna and we feel incredibly blessed by her presence. I encourage you to talk to someone else about what you are feeling in this situation. It can be a very lonely, confusing time, so talking about it can help straighten the jumbled mess of thoughts swimming around in your head. I, for one, would be more than happy to hear everything you have to say and open up to you and tell you how it is from my point of view - the good, the bad, the ugly and the beautiful. You won't feel any pressure from me, I promise.
In a time of ever-increasing acceptance and understanding of special needs, it pains and infuriates me that health professionals seem to remain in the Dark Ages when it comes to information on the quality of life of extra special people. Telling parents that their babies are better off dead is a lie. It's time to tell them the truth. It's time to change.
Wednesday, August 12, 2015
Culture Shock
So, we've been in New Zealand for a little over 4 months now and are really starting to notice the subtle differences between our new home and our home land. Here are a few we like to poke fun at:
From the first moment you set out on the streets of Christchurch, these will appear out of nowhere to ruin your day. Think you know where you're going? Think you can take the same way home? Hah! Try again, 'cause this road is CLOSED!
See those white things painted on the road? They're merely guidelines...
Watch out for cars zooming down the aisle of the car park, because even if you are this far out of your spot, they will not stop!
Why do these even exist?
These show up in unlikely places, like the supermarket.
Sometimes, these cost extra.
This is tea (or brekkie).
This is tea..
This is tea...
This is tea (or pudding)....
This is..... TEA!
These are capsicums.
These are coruguettes.
This is a pram.
This is petrol.
These are scones (pronounced skahns).
These are biscuits (I know, right)...
This is a place that shields you from the winter wind, where one room is heated somewhat consistently, but the rest remains frigid, unless you have a space heater (but, even then...)
This is what happens to your windows in winter. Squeegee, Squeegee, Squeegee!
Learn to love them!
Thursday, December 11, 2014
The Blanket Scare
Well, I just had one of those moment as a mom that scare you so much you can't even fully wrap your mind around it.
I had just gotten home from purchasing supplies to make Layna a Christmas poodle skirt (oh, yeah!) and went to sneak into her room to grab one of her current skirts to use to measure. She was stirring as I opened the door, so I froze and waited for her to be still. As she calmed down, she reached up and pulled the muslin blanket off of the side of her crib and let it fall right onto her face.
Now, we have done many a test to make sure she is quite capable of removing blankets from her head before we even let one near her in her crib. So, I felt confident that she would swat it off and carry on slumbering peacefully without any commotion. I slowly shut the door to give her a second to carry out my expectations only to re-open it and find her sound asleep with it wrapped around her face.
I actually had to tug at it to get it free. Which, of course, woke her up. I gladly picked her up, held her and rocked her back to sleep. I needed to hug her!
We only allow breathable material in her crib just in case of an instance like this. But, I am so thankful we did not have to find out for sure whether or not she would have been able to receive enough oxygen underneath the layers of muslin. Most likely, had I not been there to witness this, she would have rolled over and pulled it off herself at some point. But, I don't want to think about what else could have happened.
This could have ended so differently. If I had not been there to see this, I can't imagine what would have come of it. It may have been nothing, but the "what if" of any alternative scares me to the core. If that had been a heavier or fuzzier blanket, it could have caused unthinkable damage or even death to our precious little girl.
Health officials don't warn us about these things for no reason... they are real threats and we should take them seriously. Layna is old enough and capable enough to handle sleeping with a blanket, but even she experienced a potentially dangerous situation.
Those cute little baby "comforters" that come with that perfect little bedding set? Keep it on the rocking chair or hang it on the wall or fold it and save it for much later. It's just not worth the risk. Nor is any blanket, for that matter!
Sleep sacks are amazing!! We love them, still! Please, please think twice before you allow your child to sleep with a blanket of any kind. And, especially don't EVER leave one draped over the side of the crib!
I had just gotten home from purchasing supplies to make Layna a Christmas poodle skirt (oh, yeah!) and went to sneak into her room to grab one of her current skirts to use to measure. She was stirring as I opened the door, so I froze and waited for her to be still. As she calmed down, she reached up and pulled the muslin blanket off of the side of her crib and let it fall right onto her face.
Now, we have done many a test to make sure she is quite capable of removing blankets from her head before we even let one near her in her crib. So, I felt confident that she would swat it off and carry on slumbering peacefully without any commotion. I slowly shut the door to give her a second to carry out my expectations only to re-open it and find her sound asleep with it wrapped around her face.
I actually had to tug at it to get it free. Which, of course, woke her up. I gladly picked her up, held her and rocked her back to sleep. I needed to hug her!
We only allow breathable material in her crib just in case of an instance like this. But, I am so thankful we did not have to find out for sure whether or not she would have been able to receive enough oxygen underneath the layers of muslin. Most likely, had I not been there to witness this, she would have rolled over and pulled it off herself at some point. But, I don't want to think about what else could have happened.
This could have ended so differently. If I had not been there to see this, I can't imagine what would have come of it. It may have been nothing, but the "what if" of any alternative scares me to the core. If that had been a heavier or fuzzier blanket, it could have caused unthinkable damage or even death to our precious little girl.
Health officials don't warn us about these things for no reason... they are real threats and we should take them seriously. Layna is old enough and capable enough to handle sleeping with a blanket, but even she experienced a potentially dangerous situation.
Those cute little baby "comforters" that come with that perfect little bedding set? Keep it on the rocking chair or hang it on the wall or fold it and save it for much later. It's just not worth the risk. Nor is any blanket, for that matter!
Sleep sacks are amazing!! We love them, still! Please, please think twice before you allow your child to sleep with a blanket of any kind. And, especially don't EVER leave one draped over the side of the crib!
Tuesday, November 18, 2014
Layna: A Birth Story
As our sweet little girl's second birthday rounds the corner, I feel compelled to share her story. I'm going to breeze over the birth story because, frankly, it was terrible. The nurses were rude, the midwife on call stole my joy before I was really even contracting, and nothing went the way I had wanted. But, once we left Labor and Delivery, everything changed... and I mean EVERYTHING!
6:00 am Sunday, November 18, 2012: I'm peeing in the bed!!! Oh, wait... My water broke! No contractions yet, so we are told to just hang out at home until it's time to go in to the hospital. We are so excited, we can't contain ourselves! So, we call John's family and they hit the road as soon as they can. My mom has been on vacation in Colorado for all of 12 hours, so we call her to catch the next plane home. We clean the entire house in preparation for their and baby girl's arrival. I paint her changing table. I bounce on an exercise ball. We go for a walk. We try to nap. Still no contractions. So, we have to go on to the hospital, since it's been more than 12 hours since my water broke. After a quick stop at Kroger on the way to grab some snacks and a pretty scarf, we are on our way to have a baby!
We get checked in and they load me up with Pitocin in hopes of getting me going so I can still have the water birth I desire.
It hurts so bad! We've passed the time frame allowed to get into the tub, so I request an epidural. Ain't puttin' up with that Pitocin pain for any longer. We finally sleep.
9:45 am Monday, November 19: I'm awakened by the feeling that I'm holding something back... We call in our midwife, who made it to the hospital just in time for the big moment. It's time to push!
10:28 am: Layna Marie Leland enters the world! She is 6 pounds, 9 ounces and 19 inches long! As the midwife lays her on my belly, she looks kind of blue and floppy... the nurse to my left says in a low voice, "ookaay," and whisks her away for the next 45 minutes. I need just a few stitches, but it shouldn't take this long, right? Where is my baby? We are supposed to be breastfeeding and bonding! We only get 2 hours in this room following birth! Everyone is walking back and forth, in and out of the room. The midwife has another mom to tend to. She says, "congratulations," and gives me the saddest hug I could ever imagine in a labor and delivery room that has a living baby in it. I'm so confused, but I blame it on the meds. The nurse finally hands me my perfect little angel. John looks at her, then at me and and asks, "Do you think she has Down Syndrome?"
"No! She's perfect. Look at her!" And she was perfect. We try to get her to latch onto the breast, but it doesn't work so well. It feels like a minute and it's time to move to our recovery room. I lay her in the clear bassinet and load myself into the wheel chair, and we head out to begin our new life as parents.
Our families are waiting for us in the hallway. They are mesmerized by the tiny little human staring back at them. Wanting to join in, I exclaim, "She has no eyebrows!" I think this is completely adorable and perfect for our newborn, but, I guess that is my ticket out of the hallway and into the recovery room faster than you can say, "WAIT!" So, I sit with my back to the door with the nurse who wheeled me in there, staring. It is awkward to say the least. Finally, John enters the room to say he is going with Layna to the nursery. I'm settled into my bed and we had agreed beforehand that she would not leave his sight for a while, so I bid him farewell. He's not gone too long and returns without her. They will bring her in just a little bit. We wait for what seems like ages until the pediatrician comes in.
He keeps it short. "We think your child might have Down Syndrome. She has many of the physical features that we look for. We have sent tests out for verification." He waits for a response. I whip my head around to give John the look of, "how did you know?" and all I can muster is a soft, "Okay." He looks us in the eyes, half-bows, whispers, "I'm sorry," and ducks out of the room.
My face is on fire. My head is swirling. The room feels like it's in a lava lamp, all goopy and moving all around itself. John joins me in my bed and we cling to each other, staring at the wall. I can't even muster one tear, I'm so stunned. He finds the strength to let some fall. We begin the many hours to come of wondering how it could be, what this means for her and our family, what her life will look like, if she will even be able to DO anything...
My phone keeps buzzing... We have family members who need to leave soon, but we have no baby for them to meet. Where is she? John tells me when they took Layna to the nursery, they went straight to the NICU, instead of the regular nursery. I don't understand why, but at this point, I don't really care as long as I get to hold her soon. It's been well over an hour since we moved into this new room and I am just so ready to hold my baby. Down Syndrome or not, she is my child and I want to hug her and tell her how much I love her.
FINALLY, a NICU nurse wheels Layna into our room. She tells us that our little girl has fairly severe jaundice and an infection of some sort, so she will need to remain under the watchful eye of the NICU. We will be able to care for her just about as much as we are able to, though. We call in our family.
My heart is racing. My hands are clammy. I tremble as I hand Layna to my aunt. She moves from aunts and uncles to cousins to grandparents to friends. Nobody even looks twice. Today, we can just love our baby and work on our own grief as we heal. Everyone else can wait until another day to hear the news.
Parenthood hits us hard. Her lack of tone makes breastfeeding nearly impossible. It is frustrating and heart-breaking. Lactation consultants come and go, with only slight progress. I'm having to pump and feed her with the bottle, which I'm ok with. I just want her to get that liquid gold! We sleep when we can, but between all the nurses coming in constantly and our own racing minds, rest evades us.
While we're busy not sleeping, we are falling head over heals in love with this tiny little human we made. She is perfect! We love taking care of her. The NICU nurses keep telling us that we should take advantage of their care more frequently so we can rest, but we just can't send her away. We are so excited to be parents!
She has to spend hours every day as a little glowworm, underneath a lighted blanket that helps with her jaundice. We just stand over her bassinet, oohing and ahhing. The first time she poops in our care is under one of these blankets. It scares us! We think something has exploded...turns out it is just the diaper! Hah!
A couple of days go by and we are getting more comfortable in our new role as parents and feeling more confident in our little family. Now that we have seen that our little girl is just a baby after all; that she just needs love and care like any other newborn; and that the world did not, in fact, crumble all around us due to a potential diagnosis, we feel more secure. We stare at her and go back and forth saying, "she looks like she has it right now..." and then, "I don't think she has it..." Until we hear the results of her Karyotype tests from the doctor, we can only speculate.
Wednesday, November 21: Now that we are feeling better, we start craving food other than what is served at the hospital. John and I decide that it will be good for everyone if he gets out for a bit to get some fresh air and fast food. I assure him I will be fine.
15 minutes later, the phone rings. It's the pediatrician and he has the results. It is positive for Trisomy 21. Our baby girl has Down Syndrome.
I repeat it back to him, just to make sure I heard correctly. I ask him if he's sure. He is, so I say, "thank you" and hang up. I hold my baby and crumble. Now that there is no possibility that she does not have the diagnosis, it becomes real. Until that moment, I had survived on the hope that the result would be negative and we could just carry on our "normal" life and laugh about all that crazy worrying later down the road. That will never be my reality, now. I have not cried this hard in many, many years. The sobs fall uncontrollably and heavily. I have to focus on not dropping Layna because I'm crying so hard that I'm losing muscle control in my arms and legs. There's a knock at the door.
Gail. My saving grace. Just the person I need at that very moment, since my counterpart is away and oblivious to the events taking place in his absence. She asks if I am ok and I tell her about the call I had just received. She hugs me for real. The kind of hug that releases all the tension in your body, even if just for a fleeting moment. I blubber all of my fears to her and she doesn't really know what to say. But, she tells me that Layna is a baby first, our daughter first, before any diagnosis. She tells me that the Lord put her in our lives for a reason and we are going to give her a wonderful life. She promises to bring me some pamphlets of information to help ease some of the concerns in the forefront of my mind. John returns with delicious-smelling food, but it just makes me feel nauseous and I no longer have an appetite. He looks surprised and concerned as he notices my red, puffy face all raw from sobbing. I break the news to him. He nods in understanding, not nearly as shocked as I.
We hold each other for a while. Tonight, I feel completely deflated; like I've been run over by a truck. I need sleep. Layna will stay in the NICU tonight.
November 22: Today is Thanksgiving! We have so very much to be thankful for this year. We made a human! And she is perfect and we love her more than life itself. So, yeah, we're pretty thankful. We learn that Layna has a tiny hole in her heart called a VSD. A pediatric cardiologist will be able to tell us how serious it is, but it doesn't appear to be too much of a threat at this point.
Elaine, the NICU nurse arrives at our door with our beautiful little bundle. She can't stop GUSHING about our child! She tells us we must be special people to have been given such a wonderful blessing. She believes God must have big plans for us and has 100% faith that we are the perfect parents to raise her. She hands over some folders and pamphlets of information regarding Down Syndrome and options available to us as far as early intervention. All we need is a car seat test and we can hopefully go home!
It takes TWO HOURS! Yeesh! It feels like forever, but, we head out and make it just in time for Thanksgiving dinner. The whole family is waiting to welcome Layna. What a special evening! Good food, time with those we love and, best of all, our sweet little girl is there to join us.
Once everything is tidied up and just our immediate families remain, we gather everyone around and tell them that Layna has Trisomy 21. I promise myself I won't cry, but I do any way. We tell them that we are grieving the typical child we lost and that they should feel no guilt or shame in feeling sad. But, that we aren't sorry about her diagnosis and that we even feel honored that God would entrust us with such a special child. Someone prays over us and Layna and we part ways to absorb the shock in our own ways. Everyone is so supportive. They have all fallen in love with her, too, and know deep down that nothing will shake that love.
That love only continues to grow exponentially as Layna shows us her spunky, sweet, sassy, loving personality. She has proven over and over again that she is capable of accomplishing everything a typical child can, even if it's in her own time. Two years ago, I never could have imagined how much we don't focus on the fact that she has Down Syndrome. Just like in those first few days, she is our daughter first who just needs love and guidance, like any other child. Sure, we do life a little differently than most, but we wouldn't change it for anything.
What joy our sweet little girl has brought to our lives! We are so happy and proud to be her parents. We love our little Layna Bug!
6:00 am Sunday, November 18, 2012: I'm peeing in the bed!!! Oh, wait... My water broke! No contractions yet, so we are told to just hang out at home until it's time to go in to the hospital. We are so excited, we can't contain ourselves! So, we call John's family and they hit the road as soon as they can. My mom has been on vacation in Colorado for all of 12 hours, so we call her to catch the next plane home. We clean the entire house in preparation for their and baby girl's arrival. I paint her changing table. I bounce on an exercise ball. We go for a walk. We try to nap. Still no contractions. So, we have to go on to the hospital, since it's been more than 12 hours since my water broke. After a quick stop at Kroger on the way to grab some snacks and a pretty scarf, we are on our way to have a baby!
We get checked in and they load me up with Pitocin in hopes of getting me going so I can still have the water birth I desire.
It hurts so bad! We've passed the time frame allowed to get into the tub, so I request an epidural. Ain't puttin' up with that Pitocin pain for any longer. We finally sleep.
9:45 am Monday, November 19: I'm awakened by the feeling that I'm holding something back... We call in our midwife, who made it to the hospital just in time for the big moment. It's time to push!
10:28 am: Layna Marie Leland enters the world! She is 6 pounds, 9 ounces and 19 inches long! As the midwife lays her on my belly, she looks kind of blue and floppy... the nurse to my left says in a low voice, "ookaay," and whisks her away for the next 45 minutes. I need just a few stitches, but it shouldn't take this long, right? Where is my baby? We are supposed to be breastfeeding and bonding! We only get 2 hours in this room following birth! Everyone is walking back and forth, in and out of the room. The midwife has another mom to tend to. She says, "congratulations," and gives me the saddest hug I could ever imagine in a labor and delivery room that has a living baby in it. I'm so confused, but I blame it on the meds. The nurse finally hands me my perfect little angel. John looks at her, then at me and and asks, "Do you think she has Down Syndrome?"
"No! She's perfect. Look at her!" And she was perfect. We try to get her to latch onto the breast, but it doesn't work so well. It feels like a minute and it's time to move to our recovery room. I lay her in the clear bassinet and load myself into the wheel chair, and we head out to begin our new life as parents.
Our families are waiting for us in the hallway. They are mesmerized by the tiny little human staring back at them. Wanting to join in, I exclaim, "She has no eyebrows!" I think this is completely adorable and perfect for our newborn, but, I guess that is my ticket out of the hallway and into the recovery room faster than you can say, "WAIT!" So, I sit with my back to the door with the nurse who wheeled me in there, staring. It is awkward to say the least. Finally, John enters the room to say he is going with Layna to the nursery. I'm settled into my bed and we had agreed beforehand that she would not leave his sight for a while, so I bid him farewell. He's not gone too long and returns without her. They will bring her in just a little bit. We wait for what seems like ages until the pediatrician comes in.
He keeps it short. "We think your child might have Down Syndrome. She has many of the physical features that we look for. We have sent tests out for verification." He waits for a response. I whip my head around to give John the look of, "how did you know?" and all I can muster is a soft, "Okay." He looks us in the eyes, half-bows, whispers, "I'm sorry," and ducks out of the room.
My face is on fire. My head is swirling. The room feels like it's in a lava lamp, all goopy and moving all around itself. John joins me in my bed and we cling to each other, staring at the wall. I can't even muster one tear, I'm so stunned. He finds the strength to let some fall. We begin the many hours to come of wondering how it could be, what this means for her and our family, what her life will look like, if she will even be able to DO anything...
My phone keeps buzzing... We have family members who need to leave soon, but we have no baby for them to meet. Where is she? John tells me when they took Layna to the nursery, they went straight to the NICU, instead of the regular nursery. I don't understand why, but at this point, I don't really care as long as I get to hold her soon. It's been well over an hour since we moved into this new room and I am just so ready to hold my baby. Down Syndrome or not, she is my child and I want to hug her and tell her how much I love her.
FINALLY, a NICU nurse wheels Layna into our room. She tells us that our little girl has fairly severe jaundice and an infection of some sort, so she will need to remain under the watchful eye of the NICU. We will be able to care for her just about as much as we are able to, though. We call in our family.
My heart is racing. My hands are clammy. I tremble as I hand Layna to my aunt. She moves from aunts and uncles to cousins to grandparents to friends. Nobody even looks twice. Today, we can just love our baby and work on our own grief as we heal. Everyone else can wait until another day to hear the news.
Parenthood hits us hard. Her lack of tone makes breastfeeding nearly impossible. It is frustrating and heart-breaking. Lactation consultants come and go, with only slight progress. I'm having to pump and feed her with the bottle, which I'm ok with. I just want her to get that liquid gold! We sleep when we can, but between all the nurses coming in constantly and our own racing minds, rest evades us.
While we're busy not sleeping, we are falling head over heals in love with this tiny little human we made. She is perfect! We love taking care of her. The NICU nurses keep telling us that we should take advantage of their care more frequently so we can rest, but we just can't send her away. We are so excited to be parents!
She has to spend hours every day as a little glowworm, underneath a lighted blanket that helps with her jaundice. We just stand over her bassinet, oohing and ahhing. The first time she poops in our care is under one of these blankets. It scares us! We think something has exploded...turns out it is just the diaper! Hah!
A couple of days go by and we are getting more comfortable in our new role as parents and feeling more confident in our little family. Now that we have seen that our little girl is just a baby after all; that she just needs love and care like any other newborn; and that the world did not, in fact, crumble all around us due to a potential diagnosis, we feel more secure. We stare at her and go back and forth saying, "she looks like she has it right now..." and then, "I don't think she has it..." Until we hear the results of her Karyotype tests from the doctor, we can only speculate.
Wednesday, November 21: Now that we are feeling better, we start craving food other than what is served at the hospital. John and I decide that it will be good for everyone if he gets out for a bit to get some fresh air and fast food. I assure him I will be fine.
15 minutes later, the phone rings. It's the pediatrician and he has the results. It is positive for Trisomy 21. Our baby girl has Down Syndrome.
I repeat it back to him, just to make sure I heard correctly. I ask him if he's sure. He is, so I say, "thank you" and hang up. I hold my baby and crumble. Now that there is no possibility that she does not have the diagnosis, it becomes real. Until that moment, I had survived on the hope that the result would be negative and we could just carry on our "normal" life and laugh about all that crazy worrying later down the road. That will never be my reality, now. I have not cried this hard in many, many years. The sobs fall uncontrollably and heavily. I have to focus on not dropping Layna because I'm crying so hard that I'm losing muscle control in my arms and legs. There's a knock at the door.
Gail. My saving grace. Just the person I need at that very moment, since my counterpart is away and oblivious to the events taking place in his absence. She asks if I am ok and I tell her about the call I had just received. She hugs me for real. The kind of hug that releases all the tension in your body, even if just for a fleeting moment. I blubber all of my fears to her and she doesn't really know what to say. But, she tells me that Layna is a baby first, our daughter first, before any diagnosis. She tells me that the Lord put her in our lives for a reason and we are going to give her a wonderful life. She promises to bring me some pamphlets of information to help ease some of the concerns in the forefront of my mind. John returns with delicious-smelling food, but it just makes me feel nauseous and I no longer have an appetite. He looks surprised and concerned as he notices my red, puffy face all raw from sobbing. I break the news to him. He nods in understanding, not nearly as shocked as I.
We hold each other for a while. Tonight, I feel completely deflated; like I've been run over by a truck. I need sleep. Layna will stay in the NICU tonight.
November 22: Today is Thanksgiving! We have so very much to be thankful for this year. We made a human! And she is perfect and we love her more than life itself. So, yeah, we're pretty thankful. We learn that Layna has a tiny hole in her heart called a VSD. A pediatric cardiologist will be able to tell us how serious it is, but it doesn't appear to be too much of a threat at this point.
Elaine, the NICU nurse arrives at our door with our beautiful little bundle. She can't stop GUSHING about our child! She tells us we must be special people to have been given such a wonderful blessing. She believes God must have big plans for us and has 100% faith that we are the perfect parents to raise her. She hands over some folders and pamphlets of information regarding Down Syndrome and options available to us as far as early intervention. All we need is a car seat test and we can hopefully go home!
It takes TWO HOURS! Yeesh! It feels like forever, but, we head out and make it just in time for Thanksgiving dinner. The whole family is waiting to welcome Layna. What a special evening! Good food, time with those we love and, best of all, our sweet little girl is there to join us.
Once everything is tidied up and just our immediate families remain, we gather everyone around and tell them that Layna has Trisomy 21. I promise myself I won't cry, but I do any way. We tell them that we are grieving the typical child we lost and that they should feel no guilt or shame in feeling sad. But, that we aren't sorry about her diagnosis and that we even feel honored that God would entrust us with such a special child. Someone prays over us and Layna and we part ways to absorb the shock in our own ways. Everyone is so supportive. They have all fallen in love with her, too, and know deep down that nothing will shake that love.
That love only continues to grow exponentially as Layna shows us her spunky, sweet, sassy, loving personality. She has proven over and over again that she is capable of accomplishing everything a typical child can, even if it's in her own time. Two years ago, I never could have imagined how much we don't focus on the fact that she has Down Syndrome. Just like in those first few days, she is our daughter first who just needs love and guidance, like any other child. Sure, we do life a little differently than most, but we wouldn't change it for anything.
What joy our sweet little girl has brought to our lives! We are so happy and proud to be her parents. We love our little Layna Bug!
Tuesday, May 20, 2014
"You are blessed. You know that, right?"
While meandering through the grocery store here at the beach, hubby, baby, and I were stopped by a nice lady asking if we wanted to try her bbq salmon and mushroom/ corn succotash. Of course we did! I grabbed a plate and took a bite. It was delicious! Before I could even finish chewing to give her my raving review, the lady gazed at baby, looked at me and hubby, and said,
"You are blessed. You know that, right?"
"Really? I'm so happy you said that! I've been wondering, but now I'm convinced that our beautiful, sweet, intelligent child is in fact a blessing and not a curse."
Ok, that's not what I actually said. However, it sure was passing through my mind as I incredulously declared, "of course!"
I understand that this lady just didn't know what to say once she noticed the obvious detail of our child having Down Syndrome. I'm sure she had the best of intentions, as do all of the people who make uncomfortable comments to us. This is why I'm writing this post. I hope to help diffuse some of the "awkward" when interacting with families with special needs. Below is a list of comments to avoid.
1.Using words like blessed, lucky, etc.
You are correct! We ARE blessed to have such a sweet, loving, happy child. She would probably have these same characteristics had she not been born with Down Syndrome, however. So someone telling us that we are blessed just because she has an extra chromosome makes us feel weird. It's like she is put on a pedestal and while acceptance is wonderful, let's not take it to the other extreme, either. Yes, she enriches our lives so immensely; but so would a typical child. They all bless us, it's just in different ways. This also makes us feel like you are trying to convince us that this child is lovable, when we already love her as much as we possibly can. There is no more room in our hearts to love her any more than we already do!
2. "God must think you are strong because he gave you this child."
This is so deceiving, because it seems like a compliment on the outside, but it really just makes us revisit why were given this child and feel uneasy again. We have already been over and over why this happened to us and our baby. So, hearing that we "must" be strong only makes us wonder if we really are equipped to handle all that this life will throw at us. Also, just having our little star doesn't make us heroes. We are normal people who struggle with sleep deprivation and the demands of an independent, opinionated toddler. This does not make us any "stronger" than any other parent out there.
3. "I couldn't handle having a child with special needs."
You don't know that! We might have said the same thing 18 months ago, and to be honest, sometimes we struggle. But, we DO handle it and this is our life now. It only feels different when our days mix with those who don't deal with special needs. Those families have their struggles, too, though. So don't sell yourself short! You never know how you will react to a situation until you actually experience it. Who knows? You might be the most amazing parent to a child who needs extra care.
4. "Is she (insert developmental milestone)-ing yet?"
I think this actually applies to ALL children, but it especially does to those with special needs. It is heart-wrenching when, after answering the question of how old my daughter is, to have to say, "no, she's not doing that age-appropriate thing yet. We're working on it (so hard, every day), though." Instead, just ask how or what she is doing now. This leaves it open for us to gush about all of the amazing progress our precious baby has made and actually leaves us feeling proud instead of defeated!
5. Using the diagnosis to label the child
What I mean is saying, "the Down Syndrome child" instead of, "the child with Down Syndrome." It just sounds better when you put my child before her diagnosis. After all she is Layna, not Down Syndrome. She HAS a genetic disorder, just like she HAS blue eyes and brownish-blonde hair. What's something you were born with and you have to deal with every day, but doesn't DEFINE you? Skin color, for example? Yes, this might play a huge role in who you are as a person, but it doesn't make up you as a whole. I don't like describing people by their skin color or anything else that goes beyond the surface. It's too personal to label a person by something like that. So, when describing a child with special needs, put him/ her FIRST, followed by the disability (i.e. child with Down Syndrome/ Autism/ blindness/ in a wheelchair/ etc).
So, how do you go about interacting with a family that has special needs? It's easy! Just TALK to us! We are just like every other family, so treat us like you would anybody else you see meandering through the grocery store. If you want to say something, but just can't think of anything, tell us how pretty/ handsome our little one is. We love to hear that! MOST (and, I say most because I can't speak for everyone) of us love it when people come up and strike up conversations about the diagnosis we face. Advocating is a favorite past-time of us special needs parents, so if you have a question, ask! Maybe not, "what's wrong with her?" but you get the idea. And resist the urge to cLaM uP. Just remember, we are normal human beings who can handle any standard stranger-to-stranger conversation. If all you can muster is a, "hi," then you did great!
I hope all of this make sense and is somewhat helpful. Please don't hesitate to leave questions in the comments! Also, if you are a special needs parent and you have more to add, please do so!
Let's get rid of the awkward and get to know each other!
"You are blessed. You know that, right?"
"Really? I'm so happy you said that! I've been wondering, but now I'm convinced that our beautiful, sweet, intelligent child is in fact a blessing and not a curse."
Ok, that's not what I actually said. However, it sure was passing through my mind as I incredulously declared, "of course!"
I understand that this lady just didn't know what to say once she noticed the obvious detail of our child having Down Syndrome. I'm sure she had the best of intentions, as do all of the people who make uncomfortable comments to us. This is why I'm writing this post. I hope to help diffuse some of the "awkward" when interacting with families with special needs. Below is a list of comments to avoid.
1.Using words like blessed, lucky, etc.
You are correct! We ARE blessed to have such a sweet, loving, happy child. She would probably have these same characteristics had she not been born with Down Syndrome, however. So someone telling us that we are blessed just because she has an extra chromosome makes us feel weird. It's like she is put on a pedestal and while acceptance is wonderful, let's not take it to the other extreme, either. Yes, she enriches our lives so immensely; but so would a typical child. They all bless us, it's just in different ways. This also makes us feel like you are trying to convince us that this child is lovable, when we already love her as much as we possibly can. There is no more room in our hearts to love her any more than we already do!
2. "God must think you are strong because he gave you this child."
This is so deceiving, because it seems like a compliment on the outside, but it really just makes us revisit why were given this child and feel uneasy again. We have already been over and over why this happened to us and our baby. So, hearing that we "must" be strong only makes us wonder if we really are equipped to handle all that this life will throw at us. Also, just having our little star doesn't make us heroes. We are normal people who struggle with sleep deprivation and the demands of an independent, opinionated toddler. This does not make us any "stronger" than any other parent out there.
3. "I couldn't handle having a child with special needs."
You don't know that! We might have said the same thing 18 months ago, and to be honest, sometimes we struggle. But, we DO handle it and this is our life now. It only feels different when our days mix with those who don't deal with special needs. Those families have their struggles, too, though. So don't sell yourself short! You never know how you will react to a situation until you actually experience it. Who knows? You might be the most amazing parent to a child who needs extra care.
4. "Is she (insert developmental milestone)-ing yet?"
I think this actually applies to ALL children, but it especially does to those with special needs. It is heart-wrenching when, after answering the question of how old my daughter is, to have to say, "no, she's not doing that age-appropriate thing yet. We're working on it (so hard, every day), though." Instead, just ask how or what she is doing now. This leaves it open for us to gush about all of the amazing progress our precious baby has made and actually leaves us feeling proud instead of defeated!
5. Using the diagnosis to label the child
What I mean is saying, "the Down Syndrome child" instead of, "the child with Down Syndrome." It just sounds better when you put my child before her diagnosis. After all she is Layna, not Down Syndrome. She HAS a genetic disorder, just like she HAS blue eyes and brownish-blonde hair. What's something you were born with and you have to deal with every day, but doesn't DEFINE you? Skin color, for example? Yes, this might play a huge role in who you are as a person, but it doesn't make up you as a whole. I don't like describing people by their skin color or anything else that goes beyond the surface. It's too personal to label a person by something like that. So, when describing a child with special needs, put him/ her FIRST, followed by the disability (i.e. child with Down Syndrome/ Autism/ blindness/ in a wheelchair/ etc).
So, how do you go about interacting with a family that has special needs? It's easy! Just TALK to us! We are just like every other family, so treat us like you would anybody else you see meandering through the grocery store. If you want to say something, but just can't think of anything, tell us how pretty/ handsome our little one is. We love to hear that! MOST (and, I say most because I can't speak for everyone) of us love it when people come up and strike up conversations about the diagnosis we face. Advocating is a favorite past-time of us special needs parents, so if you have a question, ask! Maybe not, "what's wrong with her?" but you get the idea. And resist the urge to cLaM uP. Just remember, we are normal human beings who can handle any standard stranger-to-stranger conversation. If all you can muster is a, "hi," then you did great!
I hope all of this make sense and is somewhat helpful. Please don't hesitate to leave questions in the comments! Also, if you are a special needs parent and you have more to add, please do so!
Let's get rid of the awkward and get to know each other!
Tuesday, April 29, 2014
She's Sinking, Mate!
There's a song out right now called, "I Wanna Get Better." It's by a band called Bleachers, and the chorus has been playing over and over in my mind all evening. If you want to listen, click here! It's catchy, right? It won't get outta my head! I think there might be a reason for that, though.
I, Nikki, want to get better.
Ever since college, I have battled depression; and becoming a mommy has only made it more difficult. Add sleeplessness, crazy hormones, learning to care for a new baby, and special needs to an already fragile mental frame, and you get an unhappy lady! This one is sneaky, though. I'm so focused on my child and my life that I don't notice it creeping in until I look in the mirror one day and see Medusa staring back at me. Yikes! Then, I have to hunker down, let the dishes and laundry pile up (and whatever else needs done), and focus on myself until I feel well enough to get off the couch and run myself ragged again...and again...and again... Where does the cycle end?
For anyone who has not ever experienced depression, imagine yourself in the middle of the ocean, during a storm, without a life jacket, clawing to stay above the surface to catch just one more life-saving breath. And with each colossal wave that overcomes your body, your energy and resolve to keep your head above water dissipates to nothing. It's torture. To stay afloat simply becomes too much to bear and you find yourself thinking, "She's sinking, mate!"
That cliche' phrase, "stay afloat".... People use it daily, but it has such a deeper meaning when you have experienced emotional drowning. It's impossible to go through every single day being told that you are too fat, too thin.. awkward... stupid....WORTHLESS. Where do these beliefs come from? Your own mind. At least, that's what you tell yourself.
The truth is that in such a vulnerable state anything, even if untrue, seems legitimate and Satan does a happy dance when he succeeds in making you believe such things. It's not your brain or my brain betraying us. It's Satan doing what he does best - DECEIVE. "...Whenever he speaks a lie, he speaks from his own nature, for he is a liar and the father of lies." - John 8:44.
Ahhh, it feels good to be reminded that I am not in fact crazy, fragile, or doomed to be sad for the rest of my life. None of this burden falls on my shoulders. I can't help it that I get down...anybody would with an enemy constantly feeding them sneaky lies that seem like truth! Some of us struggle more than others, and that is ok. Some even need medication to get them through, and that is ok, too. Being depressed does not mean that we are weak. In fact, deciding to get help shows just how strong we are, because it takes courage to admit that we prideful humans can't do it on our own. The good news is that joy always triumphs! As is written in 1 Corinthians 10:13, the Lord provides "a way out" when things become too much to bear; thank goodness!
If you feel this way, know that you are not alone. Even just earlier this evening, I was afraid that I was slipping back into it. Writing this post, however, has helped remind me that the Lord is good and there is so much TRUTH to battle any size lie that is thrown at me. If nothing else, even if you don't believe it at the time, tell yourself (out loud) that you are loved. No matter how alone you are on the earth, there is a Father sitting right next to you with His arms open wide, ready for you to reciprocate His embrace.
I, Nikki, want to get better.
Ever since college, I have battled depression; and becoming a mommy has only made it more difficult. Add sleeplessness, crazy hormones, learning to care for a new baby, and special needs to an already fragile mental frame, and you get an unhappy lady! This one is sneaky, though. I'm so focused on my child and my life that I don't notice it creeping in until I look in the mirror one day and see Medusa staring back at me. Yikes! Then, I have to hunker down, let the dishes and laundry pile up (and whatever else needs done), and focus on myself until I feel well enough to get off the couch and run myself ragged again...and again...and again... Where does the cycle end?
For anyone who has not ever experienced depression, imagine yourself in the middle of the ocean, during a storm, without a life jacket, clawing to stay above the surface to catch just one more life-saving breath. And with each colossal wave that overcomes your body, your energy and resolve to keep your head above water dissipates to nothing. It's torture. To stay afloat simply becomes too much to bear and you find yourself thinking, "She's sinking, mate!"
That cliche' phrase, "stay afloat".... People use it daily, but it has such a deeper meaning when you have experienced emotional drowning. It's impossible to go through every single day being told that you are too fat, too thin.. awkward... stupid....WORTHLESS. Where do these beliefs come from? Your own mind. At least, that's what you tell yourself.
The truth is that in such a vulnerable state anything, even if untrue, seems legitimate and Satan does a happy dance when he succeeds in making you believe such things. It's not your brain or my brain betraying us. It's Satan doing what he does best - DECEIVE. "...Whenever he speaks a lie, he speaks from his own nature, for he is a liar and the father of lies." - John 8:44.
Ahhh, it feels good to be reminded that I am not in fact crazy, fragile, or doomed to be sad for the rest of my life. None of this burden falls on my shoulders. I can't help it that I get down...anybody would with an enemy constantly feeding them sneaky lies that seem like truth! Some of us struggle more than others, and that is ok. Some even need medication to get them through, and that is ok, too. Being depressed does not mean that we are weak. In fact, deciding to get help shows just how strong we are, because it takes courage to admit that we prideful humans can't do it on our own. The good news is that joy always triumphs! As is written in 1 Corinthians 10:13, the Lord provides "a way out" when things become too much to bear; thank goodness!
If you feel this way, know that you are not alone. Even just earlier this evening, I was afraid that I was slipping back into it. Writing this post, however, has helped remind me that the Lord is good and there is so much TRUTH to battle any size lie that is thrown at me. If nothing else, even if you don't believe it at the time, tell yourself (out loud) that you are loved. No matter how alone you are on the earth, there is a Father sitting right next to you with His arms open wide, ready for you to reciprocate His embrace.
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