Monday, December 21, 2015

When I faced my biggest fear

A few nights ago Cash woke up in the middle of the night which is a rare occasion. He often sleeps through the night and usually only wakes up when he's not feeling well. Half asleep, I picked him up, nestled him close to my chest, fixed him a bottle and took him back with me to bed. As I studied his almond eyes, listened to his deep breaths, I realized it was probably the first time that I had sat in silence for many days. There wasn't a toddler, or should I say Power Ranger, running through the house, a roar of chatty teenagers at school, or a ding of the phone. Just the silence of the night and the breath of my husband next to me. And out of that silence, when I finally allowed Him to be heard, God spoke to my heart the clearest I've heard in months. "There's your biggest fear." At first I was unsure of what he meant. My biggest fear?

But I looked at my son and remembered a day not long ago when the possibility of my son having Down Syndrome was my biggest fear, the worst thing that could crowd my very comfortable life. When the mere poosibility sent me to the floor in tears. I was fearful of the life we would have, the hurdles he would be faced with, and the affect it would have on our Parker. Would my husband and I spend the rest of our days changing diapers and taking care of our son? So much fear. So much sorrow, anger, and bitterness. 

I've spent many of my days the past 8 months trying not to listen to God but also in great desperation for Him to notice my conflicted, heavy heart and heal it. For so long, I have wanted to hear what He has to say because my mind didn't truly believe that He loves me. My heart knows full well that He does but my mind is a battleground of emotions where the casualties on any given day, even any given moment, range from many to few. 

When God spoke those words I knew He was using them to remind me of how far we have come in our youngest son's short life so far. We have experienced the deepest of sorrow but the most beautiful joy. We have battled, fallen, and retreated. We have conquered, laughed, and rejoiced. He reminded me that I have faced what was once my biggest fear. My son has Down Syndrome but his future is much, much brighter than I once dreamed. 

I have new fears now. Fears of losing loved ones. Fear of the future. Fear of disease and pain in my family. We will have to face many of those fears in the days that make up our short life. But what I do know is that God will still push us forward, regardless of whether we see His goodness in the midst of our sorrow. He will still save us each day when fear cripples our hearts. 

And with each fear we overcome, God leads us to be more like Him. He doesn't mind a scarred and, sometimes, bruised heart. He doesn't mind a little anger, brokenness, and all the emotions that a crisis often brings. It is those hearts that He can change to fight. To be mighty. 

I had the sweet opportunity to spend some much needed time with some of my oldest friends the other night. As I looked around at each familiar face, I rememered all that I have seen each of them overcome. All the battles they, too, have fought and God reminded me that I wasn't alone. 

We have all had battles. And we have overcome. We will continue to overcome. And it is on those dark days that I hope you'll remember that hidden deep within our deepest fear can also be a breath of new life laced with joy, strength, and beautiful perspective. 

"You're a good, good father. It's who You are. It's who You are."  
 -Chris Tomlin


Monday, July 27, 2015

Nothing worth it was ever easy.

It's 2:37 am. I'm bombarded in the silence of the night all of the emotions I try to keep locked away in the day. I can hear the cautious suck of my four month old on a late night bottle, who I just pulled from his bed as his faint, tired cries began. He's wearing batman pajamas, the same ones Parker wore at his age, when times were a little simpler, and he has somehow wiggled out just his toes  from the mess of buttons, making it difficult for me to put them back in easily. I just recently mustered the courage to start letting him sleep his crib but somehow, the stillness of the night and my thoughts leave me with less than enough to put him back. It's times like these that God forces me to come face to face with my state of mind and where I stand with Him. I'd rather pretend, though. During the day, when needed, I can pull the emotional shades of my heart and focus on really anything but the things I need to. I obsess over trivial things so that I don't have to focus on the things I'm truly afraid of. And there are many, many days that those shades can remain open because I'm feeling positive, thankful, and trusting of God. The days when I'm "on that mountaintop," as my Dad always says. But, in the midst of it all, those days when the shades are closed can do so much damage that it washes away all the hard work on those good days. And, I have to clean up the mess and start again. This summer has been the hardest yet most beautiful of my life. My precious friend passed away, leaving her two sweet boys without a momma and her family with a broken heart. Learning and still coming to terms with how different our life is with sweet baby brother and leaning how to alter our marriage and our relationship with Parker to fit this new normal. All the while, being overcome by such a deeper love. You think from this emotional marathon I've been on that I would have lost all this baby weight by now. :) Dream on, Brooke. 

The last several nights I've had the most vivid dreams. I've always been a dreamer and many times, they are off the wall craziness where I'm having to kick off snakes in a cave like an Indiana Jones movie I watched as a kid. Or, those back to school jitters that Warren loves to tell everyone about where I'm teaching math in my sleep or telling imaginary kids they need to pay attention. All dreams I've literally had recently if you can truly get a handle on my nerdiness. But, then, there's those dreams that bring to light all the emotions I'm constantly pulling the shades on and I know they are a true testament to my frailty and fear and all the ways I don't allow myself to trust God. Two nights ago, I dreamt that a horrible tornado came where I had to terrifyingly grab my children to safety until it passed. When it did, I came outside to immediately find my husband, knowing that would be the first thing he'd do was look for us after it was over. In the dream, I kept looking and looking but couldn't find him. I'd even find myself pulled from the dream in my subconscious only to try to go back in so that I could try to find him again. In the dream, I was hysterical not being able to find him but I never could and I knew that something terrible had happened. Then, there was last nights dream where I had to take Parker to the hospital because something was wrong with his skin. In the dream, the doctor told me he wouldn't make it because his skin had that flesh eating bacteria and it had done too much damage. I know, yall. Intense is an understatement. 

Really, these dreams are actual representations of my fear of losing control of the things in my life that I love the most. The fact that Warren is such a rock for my soul that it scares me to imagine my life without him. The fact that I can protect my children from many dangers of this world but that, there are truly, many things that I just can't protect them from. Many things since Cash feel much more vulnerable. I always knew things could happen, things I couldn't help or control. But, now, all those things are constantly in the forefront of my mind day in and day out and it is so hard for me to trust God. It feels almost impossible at times. As I look at my littlest love tonight. Feel his steady breath in his sleep, watch his perfect lips twitch, and feel his exposed toes wiggle, I'm fearing the future. I'm fearing the real threat that this precious soul could have to battle leukemia someday. After all the miracles God has brought in his short life, as far as He has taken our family, and It's still like I have to fight a battle to force myself to trust Him. In the stillness of the night, in the back of my heart, I can hear the Lord whisper, "Do you believe that I love him?" I'm having to fight the tears because, even though I can't seem to trust Him, even though I ignorantly doubt His love for me, I know with all my heart that he loves Cash. And then, He does it again. Playing games with my heart because I'm so ridiculously stubborn that we can never do it the easy way. "If you know I love him, I will take care of him. And if I love Cash, I must love you too."
Though it's unsettling for me to make myself trust God, to unwillingly relinquish that desire to control and keep tight the most important people in my life, I have to. I don't want to but the weight of trying to keep my life steady on my own is suffocating. Because I'm just too weak, too weary to carry all this much longer. 

God put it on my heart at the beginning of this journey with our tiny son to be breathtakingly honest with the world. Especially regarding my constantly changing relationship with Him because He desires our honesty in such a deeper way than I've ever realized. That's the only real way He can heal us is if we honestly open ourselves to Him. It hurts sometimes, many times, and one of the hardest things I do in my life on a daily basis. But, at the end of this, I know, without a single doubt that my relationship with God will be as real to me as this baby I'm holding. And it'll be big. The getting there is the hard part. But it's worth it. Nothing worth it was ever easy. 

I promise I'm not always this incredibly intense, although my Hubby might disagree. :) But I only write when God calls and many times, it's when I'm having to learn something. I can only hope this journey can touch one person and bring just one person to the realness of Jesus. 

Thursday, July 2, 2015

"This is my fight song"

This new song by Rachel Platten speaks to my soul. I feel like if I had a song playing through my life this would be it.

"This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me"

I could seriously fist pump through that song all day. 

Life has been good for my family and my boys. Cash is doing incredible and Parker is constantly exploring and asking "why?" Sometimes the questions drive me insane..other days, I find myself inspired by his wonder. 

If there is one thing this new part of my life has taught me, it is the celebration of the "moments." Those tiny fragments of time that normally pass us by without notice yet hold so much beauty and purpose. And though this new appreciation is mostly beautiful, I find myself having to be reminded to have grace for others. Since I want you to see the honest parts of me, both good and bad, I'll be real. I find myself struggling frequently with having grace for others in my heart. When that momma is complaining on social media that her child has a runny nose or when someone rants and raves publicly because someone said something that offended them or some type of service provider didn't treat them quite like they thought they should be treated. God has to remind me, "Have grace, Brooke."  Those insignificant things that would have normally had me frustrated and overwhelmed are now so so small. Praise God for that part.

The other day, I was picking up some pictures from Walgreens and as I was gathering my boys and heading from the photo center to check out, the associate assisting me peeked in at Cash, lightly squeezing his toes.. And she noticed something that I've been fearful of. Very sincerely, she asked, "does she have a touch of Down syndrome?" Hesitantly, I said, "He does have Down syndrome." I was fearful for a moment of what words would come next. Would she mention that "downs kids" (please never use the word "downs" as the primary adjective to describe my child like "downs baby." My grace may not shine through) are always so happy or something else that would cut the still healing wound of my son's diagnosis. No. Instead, with a smile, she said "My niece had Down syndrome. She just passed away last year. I miss her." "How old was she?" I asked. "Eighteen."

I'm not entirely sure how you can have "a touch of Down syndrome." Maybe some people just get it in their big toe, what do I know? :) But, what mattered in that simple exchange was not her wording, but her sincerity. It was God's small way of showing me the grace I've been struggling to give to others. That same day, I had anther woman, who genuinely meant it as a sweet gesture, claim that God only gives babies with Down syndrome to those who can handle it. "Special babies for special people." I cannot tell you how many times we have heard that same thing over the last three months. What about the 90% of babies with Down syndrome who are aborted while still in the womb because they don't want their child to "suffer?" Did He make a mistake with those families when He chose them? No. I've become broken hearted at the thought that millions of people miss the opportunity to see this face, full of wonder and eagerness to grow and learn. They are the ones who are "suffering."

Does it look like this sweet child is "suffering?" There are moments when I still feel consumed by fear for Cash's future. Truth is, well all suffer at time In this world. It is full of sin, hate, and Godlessness. But there are a million more moments spent in joy, where I am overwhelmed at how Parker loves that sweet little boy and how much he has transformed my heart. I choose those moments. I may never know or understand why God chose our son and family to deal with this hurtle. I do know now, that in every way, even when moments are overwhelming and breathtakingly uncertain, I am changed and blessed by his precious life. Parker will be a better man because of Cash, we will be a stronger family, and so many of you will be changed by his ability to see joy in the darkness. 

Thank God for Down syndrome. For the opportunity to learn to truly fight. For allowing me to be one of the few who gets the opportunity to be changed so deeply that it requires me to question all that I was and all the insignificant things I cared about before.  God used 47 chromosomes to help me take back my life.

"This is my fight song. Take back my life song."

Thursday, June 4, 2015

Honoring the life of my beautiful friend, Erin Faulkner Bradham

The brightness of the world dimmed a little on Monday, June 1. A dear, precious friend of mine went on to be with Jesus.. My heart feels lost, confused, and overwhelmed...emotions I have been far too familiar with within the last few months. Not only was Erin special to my husband and I, so was her family. Her brother Bryce was the best man in our wedding and Warren was the best man in his. Both of our boys are each within months of one another in age and we have many sweet memories that involve Erin's parents, Debra and David.

As I have began grieving the last couple of days, I have felt so helpless. Desperately--So desperately I want to take away the pain for Erin's family. I want to hug her just once more. I want her boys to know their beautiful Momma. I want to hear her laugh.

But. Out of all those things that I want, I can only attempt to accomplish one. You see, the only thing I can do for Erin is to honor her so that maybe some day, years ahead, her boys will read this and feel her love for them. They'll get a glimpse into her spirit, her humor, and her dreams. Honor her so that perhaps you will read this and feel her memory move you. Honor her so that her family can smile at her legacy and know that her short 26 years and 23 days were full and meaningful. That is all I can do.

Let me tell you about my friend.

I'm fearful that I won't be able to adequately do her justice and even as I type this I can see her smile. I can hear her laugh at the things that I want to share. I can feel her near and I know she'd be proud.

As I read on social media all of the memories varying individuals from so many different walks of life have shared, one description stands out to me the most. Erin is fierce.

..fiercely honest.
That girl. Honest in every sense of the word. She never feared speaking her mind. I can hear her saying, "Girl needs to do something about that hair." Though much of her honesty often brought those gut-wrenching laughs, perhaps the quality I admire the most is the honesty she had about her life. Our Erin was not perfect. She would be the first to admit it. She's seen dark times in her life. She's been broken, hopeless, weak, and confused. Erin is spicy, stubborn, and often didn't listen to the advice you gave her. I know we all, especially Deb and David, wanted to shake her on many different occasions and say, "Just listen!" She was never afraid to admit that her life's journey had seen many bumps because she knew she had and would continue to overcome. She knew that all those bumps brought purpose, direction, and light. She fought hard so that those messy times would have purpose. More importantly, she knew that those dark days continually brought her back to Jesus. She wanted others to see firsthand how sweet is the redemption of Jesus.

..fiercely passionate.
She gave her whole heart to those she loved. She was a passionate daughter and sister. Though she challenged her parents many times, she loved her Momma and Daddy. She valued their loyalty to her and their ability to love her through her hard times. She loved Bryce. The bond that they shared was one I admire because I know it was so rare. She would have went to the ends of the world him. She was protective and loyal to Bryce. More than anything, she looked up to him and the man he has become. She was a passionate friend. Regardless of who had hurt or left her, she always forgave and started new. She was passionate about her boys. For as long as I have known her, she made it known she wanted to be a Momma and when that dream came true, a whole knew level of passion burst forth. She loves those boys. As we messaged just a few short days ago, she raved about her boys. She talked of how smart Paxton had become. How he was so much like her brother. She told me of how much of a Momma's boy River was and how much she loved it. "I just want to be a mommy," she said, "It's an amazing privilege that God has given me!"

...fiercely loyal.
I always knew Erin would always be my friend. She would fight for you and with you even when others hadn't done the same for her. She looked past the brokenness and took you as your are, imperfections and all. She pushed, stretched, and made you look outside of yourself so that you could be the best version of yourself.

If you walk away with anything from Erin's life, I hope you'll see how fiercely God loves us. He chooses us despite who we are. He redeems us. He pursues us even when we can't feel or see it. He desires us. Erin embodies so many of these qualities.

I hope you'll remember to be strong. To not let the heaviness of life smother your spirit. That you will live passionately and honestly so that others can see how much Jesus has rescued you from and desire to be rescued,too. I hope you'll be loyal. That you'll be a friend to someone in their darkest hour when others are running away and that you'll love them amidst their sin. I hope you'll laugh at yourself. Even when you don't feel like laughing and that you'll share that laughter with those who need it most. I hope you choose to love. Even when hate feels so much easier and bitterness has captured your heart. Lastly, I hope you'll live passionately and freely. That you won't be overcome by the challenges of this world but, instead, choose to start new each day as Erin did.

Because that was our Erin and that's her legacy.

Sis, I love you so deeply. I always will. Thank you for being such a large part of my life. Thank you for inspiring, challenging, and helping to mold me. I'll carry you always.   -Brookie


Wanted to end by sharing with you the love some of our other friends had for her.

Erin. Just saying her name, I can hear her laugh. Her loud, hilarious laugh. A laugh I will never hear again here on earth. When I got a phone call late Monday night from Brooke, I knew something was up. But I definitely was not expecting nor ready for the news that Erin had been in a car accident and died. She died. “What?! WHAT?!” I kept repeating, over and over again to Brooke. Neither of us had any words. We just sat there on the phone…not knowing what to say. I’m still not sure what to say. But I’ll do my best.

If you knew Erin at all, you knew how HARD she loved. She loved hard. She fought hard. She was passionate. Funny. Spontaneous. She was that friend you could call and say, “Hey, lets go to Fayetteville!”, and within 30 minutes she would have a bag packed, a full tank of gas, and at your house ready to go. She was so talented. She could sing, dance, and had an amazing art in cosmetology. I will never forget the LINE of people in O.C. Bailey waiting to get their hair cut or colored by Erin. She did incredible work.

She was always a devoted friend. Even if you hadn’t seen or talked to her in a while, you picked up with her right where you left off. Never missing a beat. She FIERCELY LOVED her family, her husband, and her baby boys. When she became a momma, I saw a whole new side to Erin. I saw her love like she’s never loved before. And those boys loved her back just as much.

Most importantly, Erin had a heart for the Lord. She knew, just like the rest of us, that none of us are perfect. We all make mistakes. We learn and we move on. She knew that because of the Hope we have in Jesus Christ, everything can be made new again. She was redeemed and forgiven. I can only imagine the celebration she is having right now. Meeting Jesus face-to-face. Getting all the answers to her questions. Catching up with loved ones she’s lost.

Erin, I can’t believe that you are no longer here on earth. My mind literally cannot entertain the though. Please know that your boys will be loved and taken care of. Know that they will grow up hearing how much their Momma loved them with everything she had. Giving up so much for them and always putting God first and them second. I will NEVER forget you. I will miss and think of you daily. I will see you again one day, my dear friend. I love you!

-Amy Burnside


I have memories of just sitting on the floor in Erin's room talking about life and laughing constantly. I also remember the more serious conversations about past mistakes and regrets. Her faith in God's healing and forgiving power reminds me that I am loved by a perfect Creator regardless of my flaws. My favorite memory of our friendship was when I had my outdoor bridal photos done. My stepmom and sisters were out of town, and my roommate had to leave town unexpectedly leaving me without anyone to help me prepare for the shoot. Not only did Erin do my hair, she (bringing Seth along) came to the shoot and she basically became my personal assistant: fluffing my dress, fixing my hair, and even holding my dress up all the way around to keep me from even getting close to touching mud! She made what could have been a stressful disaster into a wonderful experience. That story is a perfect picture of the kind of friend she was: loyal, generous, and selfless. I will miss her so much.

--Kate Cooper

Erin, a woman full of love, adventure, and pure fun! Her attitude towards life was carefree and truly attractive. Erin would always make you laugh and had the ability to turn any serious situation into something funny. Erin will be a friend I will never forget. You could always count on her to stay up late with you and talk life, Jesus, and the future. She adored her babies and loved her husband. Even through the hard times in life Erin always pointed back to Jesus. I always loved her random text messages, phone calls and updates. I know that Erin is rejoicing with the Angels right now because she loved to sing! My heart is heavy knowing I will not see her on earth, but I know someday in heaven I will be able to hug her neck and thank her for all the wonderful memories we shared. The last time I saw Erin was last year as she was passing through Dallas. She called me and wanted to meet up. At the time there were suppose to be several people joining us for lunch that day, but for whatever reason the others couldn’t make it. Looking back now I believe God gave me that time alone to be with just Erin knowing he had different plans for her. It was precious and sweet. I love you so much Erin. Save me a seat next to you in the choir in heaven! 

--Megan Rogers


A word that comes to mind when I think about Erin is fervent. Whatever it was that she was feeling or doing, she did it fervently! She had such an intense passion about going after what she wanted, and she was not worried about what anyone else thought. She inspires me to live my own life with great passion and no regrets. Though I was not super close to Erin, my heart aches over her being gone. I really can't even accept that she is. I am grateful that I can find peace in knowing that she is with our Father, and that I will see her again someday!! Erin, you are loved and missed by many!!!

--Samantha DuBach


Back in high school, I had a teacher who started off his class by having each of us write our own Obituary. Sounds a little "much" for the first day of school, right? At first all the students in the classroom, including me, were looking around wide eyed not knowing exactly what to write down in our freshly purchased notebooks. Our teacher, seeing this, told us that we should write down what we wanted people to say about us if we were able to look down from Heaven and read the written words of our loved ones left behind. What would people remember us by? What would our legacy be? It was an assignment I will never forget. When I wrote the words I wrote down- it put my thoughts in check. It made me smile at people I would normally not even glance at, it made me talk to people differently and it made me love people more passionately knowing that we are not promised tomorrow and life can change within the blink of an eye. 

I just got done reading the obituary of a dear friend of mine. Something that a 27 year old should never have to do. A friend who, selfishly I wrestle with thinking was taken too soon from this Earth. She was a mother, a wife, a friend and most importantly...a follower of Jesus. As I read the words "..she had a gift of making each person feel special and loved" I cant help but think that those couple of words truly do sum up who Erin was. She put others before herself and was a true loyal friend. She was a friend that would drop everything to come "poof" your hair before a big date you had. She was a friend who would speak truth into your life in times that you needed to hear it the most. She was a friend who loved passionately and threw her whole self into whatever she had her mind set on doing. She was a friend who would come sit on your hard dorm room floor and cry with you for hours when a boy broke your heart. She was a friend who had a laugh as loud as thunder that you could hear it through your dorm room walls late a night. She was a friend who when life gave her curve balls and mountains to climb...she persevered... taking them all head on. Erin was so many things to so many different people. 

My heart physically aches thinking that I can no longer just pick up the phone and give her a call knowing that she will answer on the first ring with a big "Well hey there friend!". Through all the emotions that I have been feeling within the past 24 hours- one thing remains the same...I know where Erin is right now. I know that even though my thoughts cant comprehend her being gone, God knew this date and isn't surprised by it at all. I know that she is in the presence of Jesus in a place that my mind can't even begin to fathom. She now knows the mysteries of Heaven and because of that I have a unexplainable peace even still while I sit here feeling the pain and confusion that death brings. 

Erin's obituary maybe have been written too soon according to my selfish feelings, but just like that assignment I was given in high school, knowing Erin has made me view the world differently. Her time here on Earth taught me how to love people fiercely and love people in their darkest moments. She was a real life example of how Jesus can truly heal and redeem ALL THINGS for His glory. She pointed everything back to Him and knew that He was all she needed in life. 

I will miss you so much Erin. Know that you will always be in my heart and I can't wait to hear your laugh again someday. 

--Bethany Toney

Thursday, May 14, 2015

I'm letting fear win

Our sweet Cash is doing great. We have continued our weekly blood draws to check his blasts (immature white blood cells) for the transient leukemia. For the last three weeks, all have been at 0%! This means the leukemia has indeed resolved itself and soon we will begin going monthly rather than weekly. We will likely do the monthly blood draws until he is around three because, if it were to ever develop into full-blown leukemia, it would likely occur during that window. He eats perfectly (which is huge for children with DS). Hence the more than two pounds he has gained since we've been home. 😳 He wiggles and scoots and holds his head up wonderfully, all great developmental signs!!

[this is typical. He usually scoots from the middle to here. This is at 1 month old.]

Family wise, we are good. Parker loves him so much it touches my heart. Overall, days are great. I still have many moments, some placing me on the verge of tears. I have also have moments I forget because he is so "normal." I say "I" rather than "we" for me and Warren because it isn't my place to tell my husbands story and daily struggles to the world. Perhaps one day he will share with others his personal journey. Maybe not. Either is a deeply personal and valid choice where I support him fully. 

I have been letting my fear win, though. I realized this when I caught myself doing what I do when my faith is weak: Google. I google my little heart out. Secretly searching for hours on end until link after link turns that silent shade of purple. Many times I keep my fears inside. Silently I believe that if I don't verbalize them, then Satan won't know and taunt me with them. As if he can't read my google history. Right. Other times, I keep them so personal that my family only knows simply because I talk about them endlessly, weary from the burden. But God did it again today. He laid it heavy on me to share my fears because, through my sharing, my faith can grow. And many times, still, my faith feels black from negativity. So hear they are in all their glory. 

1. I fear leukemia.

My heart is smothered by the thought. What if my Cash gets leukemia later? I fear the hospital stays, pain, and set backs that don't even exist. I find some peace in knowing that children with DS respond better to treatment and have a much lower chance of getting it again than children without DS. (Thanks, Google.)

2. I fear having another child with Down syndrome.

We have always wanted three children and my heart still feels like one more sweet baby is waiting for us later. Since I have had a child with Down syndrome, my odds default to 1% or 1 in 100. I know what you're thinking. Great odds and as you often see, the vast majority of families who have a child with DS go on to have more children with a typical genetic makeup. However, my fear is still real and I know this one will take some time to heal. Don't give me that "God won't give you more than you can handle" crap. I know we are stronger than the average bears. But, sometimes, I just don't want to have to be. 

3. I fear that people will immediately classify Cash rather than challenge him. 

If you know me, you know my fault and my strength is that I'm stubborn as--(I think you know what I want to say here). (Mom says I get it from Dad.) My stubbornness will help in parts by not only pushing us to do all we can for Cash to stimulate his abilities but also help me advocate for what what I know he is capable of. We will treat Cash just like Parky, especial behavior-wise. I fear my response to the first person who pets my son with pity as if he is some invalid or doubts his intelligence because he has that extra special chromosome. He will do great things. I declare that. I pray that I have the patience to educate a world where many are ignorant and unaccepting of the incredible abilities of special needs children. 

I know many cannot relate to my story. But I do know we all fear. I have fears for Parker, too, as we all do for our children-special needs or not. I hope and pray you have the courage to face those fears that paralyze you. Because, so often, our fear of what the future may bring removes us from the joys of the present. Yes, sometimes they may actually come true. I'm not here to say that our lives won't include awful things.  But fight. Fight so hard the devil knows your name. And fight so that he can't win your mind. Fight because God is bigger and stronger and has made us in His image. Fight because Satan has stolen way too much from us already. I'll fight with you.  

I'll end with some of my favorite funnies. 
[this picture was completely unposed.]

[this picture so shows my child's personality. He loves pockets.]

Yall be blessed. 😘


Saturday, April 25, 2015

Carsen Asher Seals-The story of my son

          It has been on my heart to tell the story of my son. And, as I have lain awake throughout the many nights of his newborn life allowing the words I want to express flow freely through my mind, they seem to allude me now. I don’t know where to begin and I’m afraid that once I do begin I won’t be able to end. Maybe that’s the reality of his sweet little life. A bumpy, difficult beginning but a story that is without limit on beauty and possibility.

Let me begin by telling you how my little Cash came to be. During the summer of 2014, my husband and I started discussing whether or not we were ready for another little one. We already had our wild little man Parker who was to turn two in August and we had already thought we wanted them to be closer in age. Ultimately, we agreed that in May I would get off my birth control and we’d just ‘let it happen.’ I know we’ve all heard that before from many couples. “We’re not trying. We just aren’t doing anything to prevent it,” they say. My response to them is always “yeah. That’s called trying.” Whatever you call it, in May I got off my birth control.  Soon, though, I decided that I wasn’t quite sure if I was ready. I loved my job and absolutely loved our little family. I thought maybe waiting another year might be right for our family so in June I got back on the Nuva ring. I know you’re already exhausted with my indecisiveness. Well, Warren and I talked about it again and decided we would just ‘see what happens’ again and that if I wasn’t pregnant by September (I’m a high school teacher and I wanted to plan it just right with work so that I would be able to take off at the end of the year and not the first), we would try the next year instead.
     At the beginning of August, I found out I was pregnant only a month after quitting my birth control. Yeah, fertile mertle. We were excited and happy that God saw us fit for another sweet soul and told our families pretty soon after finding out. We decided to keep it on the down low from the general public until I had my first ultrasound. Once I was around 10 weeks, we let the rest of the world know.
     My morning sickness this time around was horrid which led me to believe even more so that it was a girl. I dreamed of giant bows, poofy hair, and frilly dresses. Just a few of my favorite things. When I was about 14 weeks, I randomly asked my OB at an appointment whether or not she would have been able to see any genetic abnormalities on that first ultrasound. I was just being a paranoid momma wanting to make sure my baby was okay and wasn’t surprised much when she said no, not quite yet. She did say that there was a blood test they could do that could potentially test my risk factors and, sort of ignorant to what the test actually looked for, I said why not. When I went to get my blood drawn, the lady drawing my blood warned me that she hated this screen. She said it had come back as a false positive for Down syndrome for her little boy and it does nothing but freak many mommas out.

A few days later, one of the nurses for my OB left a message on my phone saying that the tests had come back and that I did show an increased risk for having a baby with Down syndrome. When I called her back, she said she did not in any way want me to be concerned because they truly did not feel like I had anything to worry about. I was young (26 at the time) and the odds weren’t terrible (1 out of 56) and that later ultrasounds should ultimately show if anything really was wrong which they didn’t think there was. If you know me, you know I’m a natural born worrier. At first, I shook it off and tried not to sweat it. But, then the fear grew within me, and by a couple days later, I was literally in full blown panic mode. I remember putting my toddler in the bath one night, my husband at work, and absolutely falling to the floor weeping. How could we handle a child with Down syndrome? How much would our lives change? Would we be taking care of someone for the rest of our lives? After a frantic phone call, my policeman husband sped home to comfort me. Thankfully, he’s the rational one out of the two of us and reminded me of our odds. 1 out of 56. I teach math and those numbers tell me that there is a less than 2% my child would have down syndrome. Those are pretty good odds and he reminded me of that. He said that even if we did have a child with Down syndrome, it would be hard but, we would make it. As the days went on, I let the worry consume me less. Although it was often in the back of my heart, I knew that I was probably just being my dramatic self and when I did worry, I didn’t let my family know because I didn’t want them to think I was being a freak again. My mom helped to comfort me too. She had such a peace about it and, since I pretty much know she has a direct line to Jesus, if she felt a peace about it, it had to be fine. After all, she is approaching sainthood.
     So, we moved on and as the ultrasounds came and went the tech continued to calm our fears. I remember one particular ultrasound she even said that, out of her 18 years of experience, there has only been one baby that had downs that she didn’t see beforehand. Again, those are GREAT odds. I’ll take them.

The morning sickness eventually subsided but the pregnancy still carried some setbacks. My blood pressure became high as early as 16 weeks this time (partly due to my crazy anxiety after those test results) and I had to take regular medication to ensure that it stayed regulated. Life went on and baby stayed healthy. At 17 weeks, we did a private ultrasound to determine the gender. Many family members gathered together to see the gender of our sweet one. Right when the tech put the probe on belly, I saw it and knew. It was another sweet boy. Surprisingly, I wasn’t disappointed. I was happy that our Parky was going to get a brother and of course Warren loved the thought of more Batman and Power Ranger fights. It took us longer this time around to decide on a name. After going through name after name, we decided on Carsen Asher Seals. Asher means ‘blessed one’ in Hebrew and he was one of Jacob’s sons to lead the twelve tribes of Israel. When we chose Asher, I remember thinking of the small possibility that he could have Down Syndrome and thought that was so fitting. "Happy One." The irony is incredible to think about now. We couldn’t decide which name we wanted to call him so jokingly, Warren mentioned one day that we should call him Cash and it stuck.
The Gender Reveal
     Time moved and so did our lives. We prepared, enjoyed our toddler, went about our jobs, and decorated his room. Two boys. I knew being a boy mom would be fun and loved the thought of how close our boys would be. Each ultrasound confirmed that he looked and measured perfectly so my fears continued to be relieved.

As my pregnancy progressed, my blood pressure started to act up again despite the medication and my OB decided to do an extra ultrasound at about 35 weeks to check and make sure that my blood pressure wasn’t affecting his growth. The ultrasound showed that, overall, he was measuring a couple weeks behind so with that came more monitoring and a short hospital stay to stabilize my blood pressure. After a week and a half of bedrest, we finally decided to go ahead and do a scheduled C-section at 38 weeks. April 1, 2015. An April Fools baby. I was afraid no one would believe me when I told them that he was coming on April Fools.
Maternity Pictures--about 34 weeks!

Maternity Pictures--about 34 weeks!

     Parker stayed with my mom the night before so we could be at the hospital at 5:30 am. Warren and I were a nervous wreck but so excited and ready to get this thing done. We were the first C-section at 7:15 am. As they wheeled me back, Warren by my side, I was so anxious. Would he be okay? Was he too small? Were his lungs okay? As they got everything set up and began the procedure, I had Warren give me a play by play as he peered over the sheet. Was he out yet? Finally, I knew that they were getting ready to pull him out and I prepared my heart. I heard his sweet cry and the tears started flowing. That sweet cry meant so many things to me. It meant he was breathing, he was healthy, and he was ours. Warren said he looked like Parker and I watched him as he stared off at the other side of the room towards the cry. I waited and it seemed to take forever. Warren was seemingly quieter this time around as he watched the nurses do their thing before I could see him. I know now that he was quiet because he noticed that Cash looked bluer than he thought he should. He watched as the nurses put a small little mask on our baby to give him a little oxygen. They hadn’t done this with Parker. Finally, after what seemed like forever, they wrapped that little ball of love up in a blanket and brought him around the sheet so that I could see his face. Subconsciously, I assessed him and I noticed something strange. One of his little hands was sticking out by his face and I noticed it seemed smaller than it should. I kept asking Warren why his hand seemed small and he just said that he had smaller hands. There I was again. Overanalyzing and worrying for no reason at all.

On our way to the hospital the morning of--nerves!

I look good. You don't have to say it. :)

Moments later, they whisked Warren and the baby out of the room to get him weighed, etc. as they stitched me up and returned my organs to their proper location. As I lay there alone, I think my heart knew. Something was different about that little hand. Something. Once they were finished with me, they wheeled me around to an observation area where the nurse was to monitor for about 45 minutes. Eventually, my mom came back to check on me for a minute. I wanted to ask her what I was thinking. I wanted to ask her if it seemed like anything was wrong with him and if he showed any signs of…I almost felt like if I said those two words it would make it real. It would seal the deal and again I didn’t want them to think I was still worrying over something from months ago. Finally, I just asked my mom if he showed any signs and I knew that she knew what I was talking about without have to say those two words. “No, he is perfect.” Those words brought me some level of comfort, but my heart still felt unsteady. I just needed to be with him. Not long after, they wheeled me back to my room and all million of my family members followed closely behind. Except for my husband. He was still with Cash and I longed for him to be with me, to calm the fears that I wanted so desperately to hide. Finally, he came but he was alone. He said that when Cash was born, he was breeched and inhaled some fluid in his lungs so they were going to have to give him some oxygen. He was going to go back to see him but I wanted to ask him before he went but those two words choked me again. I knew that I had to ask so finally I said it. “Does he show any signs of down syndrome?” Calmly and surely he said no, hugged me, and went back to check on our son. Our pediatrician came by to explain that he was turning over our baby to the head neonatologist to handle his needs with his breathing. Again, I asked him the question that kept tugging at my heart. Once again, he said no and slowly, I felt more peace.
My families first time seeing little man. At this point, no one knew of his diagnosis.

Slowly, most of my family left the room to see if they could get a peek at Cash through the windows. It was just me and my Dad left in the room and we were oddly quiet. “Dad, did you notice his hand was a little small?” He said he had noticed but didn’t say much beyond that. I think he knew I was troubled by something. Around the corner, I could hear some people entering the room. It was Warren, my mom, and my mother-in-law. And they were crying. Why? My heart sank and I immediately asked “What’s wrong? Is he okay?”
My husband. That sweet, humble rock of mine knelt beside my bed. I’ll never forget those words that followed.
     “The NICU doctor thinks he shows signs of Down syndrome.” I remember his tears as he whispered those dreaded words as I began to cry myself. And all I could whisper through the tears was, “I think I knew.” And we wept. All of us in that room. Grieving the life for my child that I had dreamed of and prayed for in my womb. The little boy that I had only spent moments with in this world but had felt nudge and hiccup all those months. Grieving the dreams I had dreamed for him, the marriage, the children. All the things that felt destroyed with this discovery.
In the NICU in Fort Smith

I don’t remember much of what else happened that morning. I remember just wanting to see my son. Wanting to feel that bond with him. Desiring to at least allow the comfort and love I would feel from knowing that he was ours outweigh the despair I was feeling.

Finally, they came and told Warren and I that we could go back into the NICU to see him. Warren had been with him for a little while up until this point but they hadn’t let me yet because of the surgery. As they wheeled me through that hallway, I felt like everyone was watching me. In reality, I know that the nurses and people likely didn’t even know who my son was, but I felt self-conscious. Like they were looking at me with pity. I hate feeling pitied.

To get to the NICU, we had to go through the main waiting room for the Labor and Delivery floor. From a distance, I could see my older brother standing not far from where the doors to the NICU opened. If you know me and my brother at all, you know that we are very different. We love each other deeply but we communicate our emotions in very different ways which often makes our expressions of endearment towards one another less frequent. As I saw him there, waiting, I suddenly craved his comfort. Would he still love him? As my wheel chair neared him, he leaned and hugged me and I began to weep. I will never forget this moment with my brother as long as I live. In those few seconds, I felt so comforted by his tenderness in a way he’s never shown before. I felt his sorrow for me, the fact that he couldn’t change or help what was, and his love. Few words were spoken but his actions eased my hurt in small ways. I knew he would love him.

Finally, Warren wheeled me towards the NICU and in we went. He turned me around a corner and, out of all the babies huddled in that winding room, I knew which little one was mine without even truly seeing his face. As I studied him, I looked at my husband, tears shadowing my face, and said “He’s ours.” I loved him so deeply yet my heart still ached. I ached for his pain and his future. I ached for my husband and my other son. I ached for what our life would be.
My first real time to see and hold him after learning of his diagnosis

My first real time to see and hold him after learning of his diagnosis

The rest of that day was a blur. I remember floods of people coming and going to show their love and support. I remember my family and I remember feeling moments of hope that everything would be okay that day. By the end of the afternoon, I actually remember laughing at times at different things. But then night came and with it the deepest darkness my soul has ever felt. My mom took Parker home that night and Warren was ready for his night posted on the couch. I had yet to know the intimate way my soul would be revealed to my husband that night. Many of my thoughts and feelings of this night bring so much shame on the selfishness of my humanity. However, I want you to know the ugliest part of me because it truly is a valuable part of my journey. Ultimately, I know that this journey will lead me to Jesus’ feet, regardless of whether I feel it at a given moment or not. I can see now that sometimes getting to His feet is a sinful mess full of questions, despair, and faithlessness and I felt all those things. So, I share how I felt that night with candidness so that you can see the depth of my frailty and know that, despite the filth in our hearts at times, Jesus still chooses us. Every day.

I don’t use the word weeping lightly. I wept from the very deepest part of who I am. I wept for Parker. For Warren. For myself. I wept for the beautiful, happy life we had together. I wept for the thought of that perfectly healthy baby that I should be holding in my arms. I questioned whether I wanted to live at all. I wanted that night to end so badly. Yet, the hours felt stalled. I wondered why God had turned His back on our family. And the question that haunted my heart the most was “Would I be enough?”

Morning did come, and with it, some relief. The pain was still real but the light and business of the day brought more hope. The NICU doctor told us what his concerns and cautions were for Cash’s health. He would need a heart ultrasound to check whether or not he had any heart defects. He was concerned about a certain type of immature white blood cell that was showing up in Cash’s blood called blast. Typically, when the blast cell is found in our system it causes doctors to check for leukemia. Cash’s levels of blast cells were at 54% and he explained that babies with Trisomy 21 are at more risk for leukemia. Many times, babies like Cash exhibit signs of leukemia at the beginning of life but it ultimately resolves itself within the first few months of life. When this occurs, it is called transient leukemia and treatment is not needed. After speaking with hematologists at Arkansas Children’s Hospital, they felt that Cash would be best served at the hospital in Little Rock. Since it wasn’t life-threatening, both hospitals arranged to fly our sweet boy to Little Rock the next morning when I could be released, as well. Cash would fly by helicopter and Warren and I would drive by car to Little Rock.
Right before he got on the helicopter. He had to wear little ear muffs to block the sound.

at Arkansas Children's Hospital

at Arkansas Children's Hospital

Arkansas Children’s Hospital is an incredible facility where we received the most amazing care. We were able to room in with our son, helping to forge a bond between him, Warren, and I. Even more encouraging was that Parker was finally able to meet his baby brother. The first several days at Children’s was incredibly busy with countless family and doctors. I will say that my heart cannot express the love and appreciation we have for the family and friends that have carried us through this time in our lives. You are all God’s breath in my life, especially during a time when I questioned His love for me. I could still feel it through you all. We stayed at Children’s for two weeks. These two weeks were the longest, most emotional of my life. There were times of extreme hope where I praised God for our progress and times where I truly wondered if the God who I had served my entire life was laughing at my pain. In my heart, I knew that the God I love and serve was there and listening but, again, I want you to know and see the darkness, as well. Through this time, I am beginning to understand how much God values our honesty with Him. Even when that honesty is a broken mess of emotion that contradicts all that we know He is. This period in my life has been the first time that I truly understand what is meant in the Bible when it talks about Jacob wrestling with God. I truly felt that I have had to wrestle with who I think He is, who I know Him to be, and the reality of my lack of faith many times. Warren and I have each journey through this process in our own ways but still together. I can say that I cannot imagine this journey without every piece of Warren’s character. I love him with every fiber of who I am and appreciate and respect the man he is more than ever.
Oh. My heart. I hear angel's singing in unison when I see this picture.

Sweet thing.

We love that Daddy boy.

at Children's

This was when we first arrived at Children's. He was so swollen from all of the fluids and we had had little to no sleep.

As for Cash’s health, the blast cells in his blood are currently down from around 54% at birth to 2% as of Monday. We have to get his blood drawn weekly for a little while until it disappears completely but they are very confident that Cash has transient leukemia which we are so thankful for. It is something that we will always keep an eye one, especially the first couple years of life but the doctors are very confident in this area. His heart does have a very small hole which they believe will clear up on its own and cause no issues. He will also have his heart monitored every handful of months just to check his progress in this area. As for the Down syndrome, blood tests sent to the Mayo Clinic in Minnesota have confirmed he does have Trisomy 21. His type of Down syndrome is what the vast majority of individuals with Down syndrome have called full Trisomy 21. This means that each of his DNA strands has a full third copy of chromosome 21. It was not inherited and occurred completely spontaneously at conception. As for severity, we will not know the true severity of his trisomy until he begins to reach different developmental milestones. For now, we are incredibly hopeful. His muscle tone is very good and he learned how to eat rather easily, which many children in his situation have trouble with. I will say that this child is incredibly strong and active. He pulls that sweet head around far more than I remember Parker doing this soon. I feel at peace for his future. I know it will be hard and our journey will never truly end but I am hopeful that he will be able to do many of the things that I once doubted he would be able to do. I know he will be loved without end and that this child will change the lives of so many in mighty ways. The reality that he will be able to have a very full and successful life is far more real than I initially understood. We love this child so deeply and his big brother is quite smitten with this little soul. I hope to continue to share our journey, even the ugly parts, in hopes of restoring faith through hopelessness  and the opportunity to see the beauty of the life and family we have been given.
FINALLY leaving!

FINALLY leaving!

Sweet moments at home.

Sweet moments at home.

Sweet moments at home.

Sweet moments at home.

Sweet moments at home.

Sweet moments at home.

I’ll end with what I shared on Facebook when I first publically told the world about Cash. We still feel all of these things and I truly believe that this status best exemplifies our hopes and beliefs for our son.