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!
Thursday, December 11, 2014
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.
Sunday, April 27, 2014
Getting to Know You
Let's start simply. My name is Nikki. I'm a (mostly) stay-at-home-mom to a beautiful little girl, piano teacher, and preschool aide at my church. As a new mommy, I have gotten to experience the high peaks of joy and the low valleys of depression that such a wonderful life event can bring. It's bizarre... Only after finding myself in this new role have I encountered both of these states of emotion all at once! But seriously, with all those hormones making you feel crazy, combined with sleeplessness, it's hard not to feel sad sometimes; while at the very same moment you get to gaze into the steely blue eyes of the most precious thing you have ever seen, much less created yourself! What delight that brings!
As I ponder the various scenarios that bring me joy and it's foe, I begin to realize that my little family and I don't truly belong to any culture or society, as far as Christianity, parenting, and food go. We are Christians, but not what most people immediately think of when they hear that word. We strive to live in a way that looks similar to Christ and advocate for TRUTH whenever possible. This certainly does not mean we are perfect. Only Jesus himself was the only perfect human. We just try as hard as we can to be a reflection of HIM on this earth. As parents, we also pave our own path away from mainstream society. For example, our beautiful little girl is graced with designer genes. She has Down Syndrome. This provides us with many more challenges (but, also blessings) than your average mom or dad. We also cloth diaper, parent in a way that does not put her in the center of our world, and make her food from scratch. Similarly, with the way we feed ourselves, we don't follow the herd. Inside our house there is not allowed processed food (for the most part). That means no soda, no tv dinners, nothing made with white flour or refined sugar, etc. In addition, we strive to eat as organically as possible. Sounds crazy to some, but it's just how we live!
So, because I don't truly belong anywhere, I named this blog "My Life in the Seam." I am always on the edge of something, but frequently binding things together. At 24, I'm still trying to figure out what defines me in all of this. So far, I have faith, family, and food. That's what this blog will focus on. Maybe I'll even have a little "fun" while I'm at it. Sorry...couldn't resist an opportunity for continued alliteration!
As I ponder the various scenarios that bring me joy and it's foe, I begin to realize that my little family and I don't truly belong to any culture or society, as far as Christianity, parenting, and food go. We are Christians, but not what most people immediately think of when they hear that word. We strive to live in a way that looks similar to Christ and advocate for TRUTH whenever possible. This certainly does not mean we are perfect. Only Jesus himself was the only perfect human. We just try as hard as we can to be a reflection of HIM on this earth. As parents, we also pave our own path away from mainstream society. For example, our beautiful little girl is graced with designer genes. She has Down Syndrome. This provides us with many more challenges (but, also blessings) than your average mom or dad. We also cloth diaper, parent in a way that does not put her in the center of our world, and make her food from scratch. Similarly, with the way we feed ourselves, we don't follow the herd. Inside our house there is not allowed processed food (for the most part). That means no soda, no tv dinners, nothing made with white flour or refined sugar, etc. In addition, we strive to eat as organically as possible. Sounds crazy to some, but it's just how we live!
So, because I don't truly belong anywhere, I named this blog "My Life in the Seam." I am always on the edge of something, but frequently binding things together. At 24, I'm still trying to figure out what defines me in all of this. So far, I have faith, family, and food. That's what this blog will focus on. Maybe I'll even have a little "fun" while I'm at it. Sorry...couldn't resist an opportunity for continued alliteration!
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