Belonging

I was born with a CHD, or a Congenital Heart Defect. A lot of people think that heart issues are only for the old or very sick. In fact just yesterday I had someone say I was too young for problems like this. Indeed a beautiful perfect looking baby can have a very sick heart right from day one. Often you hear how they are just so perfect, they look normal, you don't look sick right? Both of my parents and grandparents too, would often recount my CHD journey for me. I was born tiny at just under 5 pounds. I stayed tiny and was merely 23 pounds by the time I turned three. I struggled with illness after illness well into toddler hood and as an infant struggled even to eat. I remember my Aunt Ann telling me that she mentioned to my Mom once how it seemed I struggled just to drink a small bottle. I would sweat and fall asleep.  To me these are all very obvious signs of a CHD, but to my unsuspecting family these symptoms didn't add up. Don't get me wrong, my mom would tell me about the times she would take me to the doctor and argue and they would reassure her I was just small and I would grow out of it. It wasn't until my Grandma insisted I be seen by an old family doctor (Or at least that's the way she always told it) that anyone mentioned my heart. Within weeks of seeing that good ol' Doc; I was undergoing open heart surgery to repair a rather large Atrial Septal Defect. I was three at the time, and a few of my big surgery memories might be my very first memories actually. They are vague of course. I remember that my room looked out onto the helipad on a lower roof and I loved to watch the helicopter land and take off. I remember walking down the hall with my chest tubes (for drainage) to the playroom that I loved to visit. These are all precious and good memories to me. I can't really remember the pain or the fear. I only recall those things through loved ones retelling my story to me.

My Mom and Me

I loved when my family recalled what a miracle it was I was here and doing so well. So for me having a CHD has always been a big part of my identity. I never loathed it, I embraced it. When I was a little girl, I would often proudly show off my zipper and my buttons to anyone my Mom would recount the story to. I was proud of my battle scars. I can remember being about 15 or so and visiting Dr. Raymond Fripp (my cardiologist, he was handsome and had a British accent) He asked me if my scars bothered me, if they embarrassed me when I wore a bikini or was around my friends. To me this was a strange question, because I couldn't remember a time without my scars. They were a part of me. Just like my learning disabilities attributed to my heart defect, or my lack of energy as compared to my peers. These latter things though, I carried rather begrudgingly. Like in college, when I was a camp counselor and during my break I would often have to lay down just so I could make it through the second half of my day. Or when my high school guidance counselor told me I should opt for the smaller university so they could accommodate my academic needs better. I didn't by the way, because I am stubborn. Or especially in middle and high school when I  had the stigma of the Special Ed math class hanging over my head. I hated walking down that hall into that room when all I wanted was to fit in and be "normal." Some things, like my physical scars I wore like a badge of honor, while other things tied to my CHD, have felt like a heavy anchor around my neck. I will often tell Amos, I wonder what it feels like to not be tired? 

So when my sweet Koralyn was diagnosed with an even more rare and massive Congenital Heart Defect then mine, I had to come to terms with the fact that there would be struggles for her. No mother wants her child to experience the hardships she has endured. We always want our children's lives to be better then our own don't we? I was scared for her from the day we heard those words: Hypoplastic Left Heart Syndrome. I worried would she have learning disabilites and struggle like I did? Would she be slower and teased by her classmates? Would she be sick and weak her entire life? Despite the fear and sadness,  I felt good in the fact that I had walked some of these struggles and I would be able to hold her hand, cry with her and tell her she would make it and it would somehow all work out. I had visions of us comparing our scars both figuratively and literally. I had visions of us being a great mother-daughter success story. See them there? They both survived and thrived and are heart warrior miracles! I would recount Koralyn's CHD journey with her, and tell her all about how strong and amazing she was. The same way my parents and grandparents would tell me all about my own heart journey. All of those visions of a special future with my daughter died the day she did. I was suddenly back to being just Kenda with a CHD.

 The fact is, I was thrust into a new world of being the patient's Mom, instead of the patient. Now I was experiencing all the fear, unknowns, and turmoil my parents did at my diagnosis and treatment. I remember telling Amos it is easier to be the patient. 

At the minute of our diagnosis with Koralyn we became CHD parents, parents of a heart warrior. Cook Children's became our home. Literally for 108 days I lived and breathed Cook Children's and my sweet Koralyn. I was ready for the long haul. Our future would be with these people, these doctors, nurses, and  countless specialists. Our future would always include Cook Children's. It became my home and my new mission. No club anyone ever wants to join, but once you are thrust into it, you learn you have friends and companions. There is a whole big group of  amazing people who fight these battles with you and for you. You belong, because in a way your entire family become warriors. Your lives change and for better or worse, have to revolve around the well being and care of your fragile heart warrior. You are willing though, of course, because that is what love does. It puts on its armor and goes into battle. Love changes its plans for you. Love becomes braver and stronger and more stubborn then it ever thought it could be.

Koralyn and her own zipper 

Then on July 25, 2012, Koralyn took her last breath on this earth. I am privileged to say I was holding her when they unhooked her breathing tube. I remember that long awful walk out of that hospital, I remember that long and horribly sunny drive home. I remember thinking; how do they expect me to leave here without my baby? How am I supposed to walk out and never return behind these locked CICU doors? Where do I belong now? Who am I if not Koralyn's Mom? Yes I knew I had other precious children to return home to, but as a mother, as an exclusive member of this CHD club it seemed a huge part of my identity suddenly died that day. Just as quickly as I had been thrust into this world I was suddenly thrust back out. No more meetings with the doctors, no more future hospital stays, and heart camp getaways, and Make a Wish trips. No more visions of our future both within the walls of Cook Children's and in the big wide world outside. No more heart meetings or comparing issues with other heart moms. Suddenly those doors were all slammed shut and locked up tight. I felt like instead of the success story, I became the horror story NO ONE wanted to hear. Especially not in the heart community, where you want to envision good outcomes, heart miracles as it were. Suddenly and to this day, in many ways I felt like a leper of the heart community. No longer belonging but outcast. I struggled to know and recall my own CHD success story and the death of my daughter. Why did I get the privilege of surviving and thriving and she didn't?

I remember at one point during our 108 days at Cook Children's I felt so trapped. I wanted to be able to pick up my daughter and run out with her. I wanted so badly to shed this diagnosis and life we had been handed. Then after she died, I wanted so badly to have a second chance at fighting the good fight for her. Being back behind those locked doors of the CICU. I wanted so very badly to turn back time and change the outcome for us all.  

So for five years now I have been trying to figure out where it is I belong now. I think this is true for any parent who loses a child. You were Mom or Dad and now what are you? Who are you? What in the hell are you supposed to do with all this parenting you have left to give. It doesn't matter how many other children you have, part of your identity is being that specific child's mom or dad. I think it may be even more profound as a special needs parent, because in many ways, your lives morph into handling those special needs. You become a special needs Mama Bear and it becomes your mission to make that "special" need seem as normal as possible. You envision the best life for your child and you find your place in the group and you fight. Then suddenly one day, and not by your own choice, your fight is over. Not because your child gets better and is cured. No, because your child is dead. Your child is the worst case scenario. 

Now your mission becomes survival. Just keep breathing. Somehow just keep breathing and loving your other children and your husband well. Then when the dust settles, you ask yourself what you are to do with all this fight left inside for your child. You ask yourself where it is you belong now with this love you have yet to give. For me this meant trying to bring joy from the pain, beauty from the ashes. It meant celebrating Koralyn's birthdays by giving to others in need. It meant still trying to find my place in the CHD community by Co-Chairing the DFW Congenital Heart Walk and becoming a part of the Children's Heart Foundation Board. It meant still going to Cook Children's both for my other children's appointments and needs, but also to remember my sweet Koralyn and the only home she ever knew. I have felt lacking these last five years in these endeavors, like all my efforts are too small and not enough. After all I haven't started some amazing foundation or written some inspirational book or changed the world in any wonderful and significant way. It still seems I am struggling to find my place even after five years of grief. I get frustrated with my lack of achievement as Koralyn's Mom I suppose.

 I also often wonder how much I have damaged my living children with my grief and sadness. How hard are my hardest days for them? Is Asa's anxiety because I am lacking and anxious myself? Is Asher's middle child syndrome because he feels forgotten in the midst of my grief? Will Abram and Karis feel like the only reason we had them was to fill some void left by their sister? Being a bereaved parent with multiple children can sometimes feel crushing. You want to love all of your children well and the weight of child loss can sometimes feel like its trying to drown you all. When these mothering doubts try to overtake me, I rest in the fact that God is sovereign and He has good plans for my children. not good plans in a Joel Osteen sort of way, you know health, wealth, and prosperity. Good plans in a savior sort of way, molding them into loving, and empathetic souls. 

All of this fear and pain was brought to the surface last Friday when I went in for my own heart procedure. Back into the halls of Cook Children's no less. My CHD specialist abruptly left UT Southwestern at the end of 2015. I struggled for awhile with who to see next. Dr. Pilgrim at Cook Children's had been so kind in helping us get the DFW Walk off the ground and I had seen his love and care for his patients so I decided to start seeing him. I should have known it would bring up any unresolved grief and of course it did. In all honesty I have been struggling for months now with grief and depression. Struggling both physically and emotionally. Feelings of pure exhaustion set in months ago, some of it of course due to my heart, some I believe from the weight of grief. Just when I think I am doing well, waves come and knock me over again. This past year has felt like one continuous emotional tsunami. I think some of it has to do with the fact that it is year 5 in this journey. So I feel like people expect me to be well and "over it." Because of that, it feels even more dark and isolating.Its not fresh to the general public or friends and family, so in some ways it feels undeserving. Grief is truly the loneliest road to walk, because no other human being can really walk it with you. Everyone processes and experiences their grief differently.

Don't worry, I recognized I needed help back in January and I am back in counseling and taking other measures as well. Some things  hurt and are hard, no matter how you try to treat them or run from them. I have tried hard in the last five years to lean into the pain instead of running from it. I witnessed people running from their pain growing up, and that is one endless and awful race if you ask me. I will say this last year has been my hardest yet from an emotional and spiritual standpoint. Don't get me wrong those first months of bereavement are hell, and yet they are a very different kind of hell then this grief that has taken hold of my heart five years on.  I have seen the bottom of the pit and tried desperately to not drown in it. Grief is a hard cross to bear. I don't have all the answers either. I lean into the pain, I acknowledge it, and acknowledge God's sovereignty in it. Then I do my best to keep breathing. I do my best each day to fight my feelings of inadequacy in being Koralyn's Mom, as well as Mom to all of my other children. I do my best to remain present for the blessings I do still get the privilege of mothering on this Earth. I do my best to not let the darkness overtake me. Many days this year, it seems I have barely been breathing. My joy seems to be missing in action. I want it back, and will continue to fight for it. That's what they never tell you, no one ever tells you that this life is just one big fight really. Anyone who tries to say that life is all rainbows and butterflies, or even mostly good, is delusional in my opinion. My faith in Jesus Christ and His word tells me that over and over. In this life I will have trouble and sorrow. Life is a battle.

As I sit here typing those last words I have to laugh. I just remembered one of my favorite songs when I was little was The Warrior is a Child by Twila Paris. Its a good ol' 80's christian ballad. I can remember playing this song over and over again in my little back bedroom in our Jim Walter house in Corrales. I would play my cassette belting out the lyrics and making up dance moves to go along. Its all so vivid in my mind right now. I absolutely loved that (some would say corny) song as a girl. I identified with it. Now going back and recalling the lyrics (minus the wonderful synthetic background music) I can still very much relate:

They don't know that
I go running home when I fall down
They don't know Who picks me
Up when no one is around
I drop my sword and cry for just a while
'Cause deep inside this armor
The warrior is a child

Unafraid because His armor is the best
But even soldiers need a quiet place to rest
People say that I'm amazing
Never face retreat
But they don't see the enemies
That lay me at His feet

I spent Friday night in a 3rd floor room of Cook Children's. I was alone after hours under anesthesia. In those quiet moments in that room all alone I missed my Mom, if she were alive she would have been here for this. I felt like a scared and weak child, and I just wanted my Mom to be there in that room to take care of me again. To ask me if I needed more pillows or blankets and to tell me everything would be okay. To tell me I was brave and strong and I could do it. Then after that I started missing my sweet Koralyn. I laid there and wondered about how many times we would have already been there in the cardiac step down unit. I have to say, right after my procedure, Amos saw Dr. Roten in one of the hallways. Dr. Roten was Koralyn and Karis' cardiologist. She asked why he was there, so he told her. After he had left for the night to relieve the babysitter, Dr. Roten came to my room to talk for a few minutes. I felt very touched by this sweet gesture she made for me. It helped my hurting heart to see her face and for a moment to feel like I belonged again.

 I have spent a lot of time over the past week just crying out to God. In that little hospital room, He was my only companion, much like right after Koralyn was born and I was left to recover from my c-section while Amos stayed with our daughter. I remember very vividly laying in that hospital bed at Harris across the street from Cook and crying out to God in agony that he would spare out daughter's life. Sometimes its okay to be in a dark and tiny hospital room alone, just you and God. I will continue to cry out to Him in my darkest and most isolating moments. Five years on, I will continue to try and find where I belong, try and find all the ways in which I am supposed to give this love and fight I have for Koralyn to others now. My prayer will continue to be that there will be purpose in all this pain. My battle cry will be that God is still sovereign and God is still good, even in the deepest end of the ocean of grief.  

So much to fight for, I want my joy back for them. So I can be my very best for them.
(The precious bear is made out of Koralyn's clothes she was actually able to wear. Papa Bear Memorials on Facebook) 

Bonus: You can listen to the song I used to belt out and dance to in my little back bedroom

Of Perfect Chromosomes, and Starbucks Coffee

On this rainy evening I stood in line at the Starbucks. 4H had been cancelled so I had decided to spend some quality one on one time with my oldest son, Asa. He loves going to Starbucks just the two of us and getting cake pops and iced teas or hot chocolate.  I love sitting sipping my hot beverage without tiny humans crawling on me so it was a win win situation in my book. Fill  up Asa's heart a little, while also having a small break from the chaos that is my home at this stage with two toddlers.

Koralyn loved Starbucks too, well in a way she did as only a baby can. You see, there is a Starbucks in the Cook Children's hospital. On any given day you can always find a number of weary parents, doctors and nurses frequenting that little store. All waiting for a cup of courage or energy or both really. In 2012, when I lived at Cook with Koralyn I was a frequent customer of that little Starbucks. I would walk in the first floor on my way up to the NICU from the Ronald McDonald House across the street. I would usually get a grande hot coffee and fill it with creamer and cinnamon. After this became a regular thing for me, the nurses and I noticed that Koralyn loved the mermaid on my coffee cup. After finishing my beverage, I would rinse out my cup and she would bat at the little green mermaid. Often she would take her dainty long fingers and scratch at it, trying I suppose to get that little mermaid off the cup and into her hands. We would laugh and joke about how I needed to buy her a stuffed version of the Starbucks mermaid. So to this day when I see the green Starbucks siren I think of my sweet Koralyn and those seemingly happy baby moments I was able to enjoy with her. I wonder would she still love the mermaid? Would she insist on having a cup of Starbucks for herself? I smile at these thoughts but also long for the answers I will never get this side of heaven. Needless to say, the sites, smells, and sounds of Starbucks remind me of my girl.

It was pretty crowded when we arrived (I think Texans take any rainy and "cooler" evening as an excuse to enjoy a hot beverage)  I told Asa to go snatch the little two seater table in the corner for us, while I stood in the long line and ordered. I  stood in line behind a dad with his young teenage daughter, she may have been 13 or a little older. They stood talking until it was their turn to order. The dad ordering first, and his daughter going second and then proudly paying for them both.

 Nothing too special about the situation in front of me, except for the fact that this young lady had Down Syndrome. She was so articulate and beautiful, her father was giving her the opportunity to talk with the cashier. As I stood there watching him, watching her, both so proud of this simple and yet I am sure profound moment; I was suddenly thrust back to December 2011. To the little room with the big ultrasound machine where we received our first diagnosis with Koralyn. I heard the words, the heavy, scary words: I think your daughter may have Down Syndrome with AV Canal Defect. I remember when the doctor left the room to give us some time to process these words and Amos and I held one another and cried. I remember leaving the office and calling my Mom. Telling her the news we had just heard. I told her through tears and I recall that she said, oh no with such anguish in her voice. She cried and told me it would all be okay, that we would love this baby no matter what and it would all be okay. Words I had told to my own baby girl in the bathroom of that office after we were told of her Down Syndrome. I went into that quiet dark little bathroom and prayed and I rubbed my growing belly and told her it would all be all right. We would be just fine and we loved her so much, no matter what. That's what mothers do I suppose, they cry and pray and then they reassure their little one despite their own grief and fear. I believed what I told her, I thought as long as she is living we will all be just fine, as long as we can fix her heart, we can all adjust to everything else.

The next few weeks after our diagnosis were such a fog. We had to wait to see another specialist to confirm the diagnosis. In that waiting I talked on the phone with my family members a lot. I read articles and blogs and research about Down Syndrome. I tried to cope and come to terms with this new life we were about to live, I think we all did.

 Then in January our diagnosis changed. It wasn't Down Syndrome with AV canal, it was simply and not so simply, Hypoplastic Left Heart Syndrome. The first question I asked Dr. Roten when she told us the news was, is this HLHS better or worse then Down Syndrome with AV Canal defect? Her words were that some believed it to be better because Koralyn's HLHS did not come with the chromosomal defect of Down Syndrome. I recall blurting out that I would much rather have Koralyn with me having Down Syndrome then in the ground having half of a heart.I don't believe in any way that Dr. Roten held this belief of not having Down Syndrome being the better option here. After all she knows how treacherous HLHS is, I believe she was simply stating the facts for me in her experience of having to tell couples this sorts of devastating, life altering things.  I felt strongly about my stance that I would rather have Koralyn living with Down Syndrome then dying with perfect chromosomes and HLHS.  In the days to come, when I would tell some people the news of our new diagnosis, they would say unknowingly, and yet cruelly to my broken heart, well Kenda, at least she doesn't have Down Syndrome. I would not so graciously repeat my stance I took since hearing HLHS in yet another tiny room that is seared into my memory.

The thing is, I am not so sure when Down Syndrome became the worst possible thing your baby could have. Being in Special Education, I worked many of my practicums and student teaching in rooms with this individuals.I subbed in the classrooms no one else wanted. I tutored for a time even after Asa was born. I had some experience with these children and young adults. Let me tell you, that they are just like us. They have emotions, ambitions, fears, hopes and dreams. These beautiful souls with Down Syndrome have favorite things, pets, friends. These individuals are more like you and me then they are different. These individuals bring joy to those that love them, like any other child they bring all the emotions for their parents and their family's that come with raising a child. Yes, many times they also bring with them some medical differences and issues that most "normal" individuals don't have to deal with. You know what, that only makes them and their families stronger and more brave and beautiful. It only proves their worth and their resilience and will to live, and dream, and do.

I guess I was angry at all the well meaning words of my friends and loved ones that said, "at least its not Down Syndrome" because I have seen the beauty and potential in these souls. Not that I have some great power to do so, only that I have been allowed to help love and teach them and actually see them behind their beautiful almond eyes and their diagnosis of Down Syndrome. Talk to anyone that knows and loves an individual with Down Syndrome and I believe they would tell you the same. There are struggles and fears and setbacks with any child, any child at all and any parent who has been a parent long, will attest to that. I also think my anger came from a place of my motherly intuition. I somehow knew that this new diagnosis was scarier and more dangerous in many ways. The gravity of my baby only having half of a heart was sobering. A hole is one thing, a hole can be repaired, patched, sewn together. Missing literally half of your heart and trying to make half a heart work like a whole? Terrifying. I do not downplay the emotions and sometimes very hard realities that come along with having a baby with Down Syndrome. After all, for weeks I thought I was having a baby with DS and I was scared and in many ways devastated at dreams for my child lost in the fray.

So there I stood in the Starbucks line biting my lips to hold back the flood of tears and emotion I felt welling up inside. Grief once again struck suddenly and with full force. I wanted in that moment so badly for our story with Koralyn to be different. I wanted in that moment, and so many moments nearly every single day since her death, for my Korlayn to be standing beside me, whatever her supposed defect. As I watched that beautiful, fully human, fully alive, girl and her dad, I wanted so badly for things, for diagnoses to be different.

I stand by my original position that I would MUCH rather have Koralyn here with Down Syndrome, then have her Chromosomes be perfect and her be in the ground like she is now. Those perfect chromosomes did absolutely nothing for her half a heart did they? Life is a gift, even if to some, that life is deemed less than, defective, not worthy. The only one who I believe gets to decide that is God himself who forms us each with purpose in our Mother's womb. I am grateful he saw fit to choose me for Koralyn. Being a mother to five beautiful children is a great privilege, even if that means loving one of them on Earth, when I can't still parent them on this Earth.

Tonight I witnessed beauty and pain in the everyday of a Starbucks line. I bit my lip and held back my tears. I took my turn to order and went back to sit with my 10 year old Son. I savored my time alone with just him, because as he said the other night, only 7 more years until he is off to college. That's just what moms do right, they cry and grieve (sometimes as privately as possible in the Starbucks line) Then they dust themselves off, smile and be brave for their children. My own Mom taught me how to do that well, and I am grateful.       

The Words We Speak

Everyone knows the old saying, "Sticks and stones may break my bones but words will never hurt me." Who came up with that and decided to teach it to every generation? Has a bigger lie ever been told? Words can, and do hurt. Words often hold more power then we know. Words can speak life or speak death.

I prefer the good ol' saying from Thumper, "If you can't say something nice, don't say nothing at all." I can remember quoting these both as a child. I was dorky and awkward and was often teased. Teased for being too skinny, wearing big plastic framed glasses, having my hair too short and looking like a boy. Kids often called me poop neck because of my big birth mark, off center on my neck. Sometimes I got teased because I was slow in reading and math, always unsure of myself. Because of my heart defect, I lacked the proper oxygen I needed, so I have always struggled with learning disabilities. I also wasn't gifted with athletic abilities so I really didn't fit in anywhere. A misfit I suppose. I often came home in tears begging to never return to school. I survived though, the worst years for me were middle school. Children can be so incredibly cruel at that age. Everything is new and scary and changing too, so its a double whammy. School is different, your body is changing, friendships change. Its often so much all at once come those middle school years.

6th grade is when my world seemingly fell apart, and my parents divorced. I began moving back and forth between my mom in New Mexico and my dad in Missouri. In New Mexico I had a wonderful home life, but it was hell on earth at school. I often got physically beaten up and once even thrown from the back of a school bus when it was rolling away from a stop. In Missouri, school was so much better but my home life was rough. How do you choose at that age? I wanted both security at home and at school. I couldn't find both at either home.

I was thrown into those lockers several times. 

 I look back on those days and my heart aches even now remembering some of those worst moments. I wouldn't wish bullying on my worst enemy. I think about my poor mom holding me while I cried, often times crying right along with me. How helpless she must have felt. I know as a mom, how much I want to protect my children from that. I know my mom did too, but had less ability to do so. She worked at my middle school and was afraid of losing her job. As a single mom working 3 jobs she struggled. I understand that now. I am honestly grateful for those horrendous experiences now. I believe they helped shape who I am. I believe I am a better person then I would have been had I not had those experiences.

6th Grade Can you see why I was teased? That hair, those glasses.

All of that to say, I did grow up with scars and a lot issues about my self worth and who I am. I am thankfully working through them. With help, I am recognizing how all of that also shaped how I see myself as less than and a lot of times not worthy. I am often filled with feelings of guilt and inadequacy. I apologize a lot. I  am so unsure of myself. I often feel like a failure  as a wife and mother. I know I am not the only woman who feels this way. I know there are many reasons to have these feelings. I am trying to be kinder to myself along the way.

A good cabin on the lake with good friends.
Medicine for the soul!

So now I want to tell a little story about something that happened over spring break last week. It has just had me thinking about all of this stuff. My family and I traveled to Branson and met some dear friends there for a few days of fun! We stayed in a cabin on the lake and had a blast with our combined 7 kids. Yes we are a little crazy I think. I found myself thanking God a lot for these friends over those few sweet days. Of course, when in Branson, I always have to visit Silver Dollar City! I know I have discussed on here before, that I have many memories connected to this simple theme park. It was during those tumultuous times in middle school, that my dad first took me to Silver Dollar City. Last week when we were there, I was thinking back to those times. Mainly because as a mom now, I realized how expensive these theme parks are. My dad had no money, and yet he made the effort to take me to SDC with all my cousins. He wanted to give me a day of fun and normal. As I walked around and thought of him, and that effort he made for me, it made me smile. It made me think fondly of him for a moment. I am so grateful for those sweet memories. Those times I can look back and clearly see my parents efforts to love me. To do their best despite their own brokenness.

At the entrance of Silver Dollar City in front of the clock.
 I think this might have been the summer between 6th and 7th grade.

SDC 2017

Our day at SDC was great! We rode rides and ate junk and even shopped a little! Everyone was happy. It was close  to closing time and our last ride would be the Train that takes you around the park. Amara wanted to ride it and we all agreed, that would be a good idea. Now let me tell you, that the night before Karis had woken up at least three times. Travel always messes with the little ones sleep schedules the most it seems. I was running on pure adrenaline and excitement that day! Right before we made our way to the train depot we had been in the tiny knife shop, because two of our boys wanted a wooden knife kit! Our Asher and Ryland had seen these knives early that morning and had asked for them throughout the day. They wanted to put their wooden knives together later that evening back at the cabin. The store as mentioned is pretty tiny and was super crowded! I was in there with 3 of my 4 kids. Karis' stroller seemed to be blocking half the store, Abram was running around knocking toy guns over and Asher was whining to buy his knife. The cashier had seemed to disappear as well so we stood in line for a long time.  It was ugly, and I felt extremely frazzled! 

Finally we made our way to the depot. A long line had formed and the conductor was yelling out that this would be the last ride of the day! I rolled up with Karis in her stroller and was told I needed to park if off to the side. Now usually, I have Amos with me for this part. One of us gets Karis out, (usually Amos) and one of us grabs the diaper bag off the stroller. So I parked the stroller, put on the brake, unhooked the diaper bag and threw it over my shoulder. Amos was dealing with Abram, who was throwing a fit. My two older boys were arguing over a funnel cake. Bryce, Amanda's little boy decided he needed to go to the bathroom right then! So off they ran, hopefully to make it back in time to catch the train. The two men had started making their way to the line with the 5 other kids. It was chaos again and we were all worried about making it into the depot and onto the last train ride. 

 We safely made it into the depot after standing in line and then telling the attendant how many we had in our group. I had the funnel cake in my hand and the diaper bag on my back. I was pleading with the boys to stop fighting over said funnel cake. I looked around at Amos and Steve (Amanda's husband) then I gasped and asked where Karis was!! I immediately tossed the funnel cake at Amos and started running back towards the stroller. I was panicked and my heart was sinking. I made my way through the crowded depot, and the line outside  to the stroller. Two moms were standing by Karis, who was sitting happily in her stroller. I ran up and unbuckled her, taking her in my arms and hugging her close. I told the moms that she was my child, laughing nervously as I explained myself. I thanked them so much for watching her and keeping her safe. It had been maybe a total of five minutes. But of course as parents we know that five minutes is so long. Five minutes is long enough to drown, to be run over, get kidnapped, choke to death. Five minutes is a long time to leave your one year old daughter unattended in a theme park. 

The two moms again asked me if she was mine and told the park employees to call of the security they had just informed about the unattended toddler. I thanked them again and they went back to their spots in line. I then started making my way back towards the train depot. When I was almost to the door of the depot a woman in line yelled out to me. She sternly said, that is UNACCEPTABLE. I turned around towards her and said, I am sorry what? She then told me that leaving my child like that was completely unacceptable and dangerous. I was dumbfounded. I stuttered and almost immediately the tears began to flow. I stood there clinging tightly to Karis on my hip and tried to defend myself. I blurted out something awkward about how I had lost a child and would never dream of endangering my other children (I think its strange how my mind immediately went to Koralyn. I laughed later at what I said, wondering if they thought I meant I had literally lost another child and not that she had died. Those people probably thought I really was an awful parent!) I told them that I loved and had prayed for Karis. I would never purposely leave her alone, it had been an awful mistake. It was then that a big man towards the front of the line repeated the woman's sentiment to me. How dangerous it was and how really truly unacceptable it had been. They kept using that word, unacceptable. A third person began to speak and chastise me. It was then that I turned and made my way back into the refuge of the depot. Afraid that if I stayed I would just get more upset and distraught. Trying to defend my mistake just wasn't working. 

I walked up to Amos crying. Amanda gently took Karis from me and began hugging me and reassuring me it was okay. She shared a story with me about a time she had left her youngest for a few moments when he was newborn. How heart wrenching it was when she realized what she had done.How panic and guilt had set in for her as soon as she realized her mistake. Amos too reassured me that everything was fine. He pointed out that we could even see the stroller parking from inside the depot. Once I had Karis back in my arms, she looked at me and patted my face ever so sweetly. I think she was telling me, its okay mama, see, I am fine! 

As we stood there, I kept asking everyone if they were sure it had only been five minutes. If we had only left her sitting there alone for five minutes. Because the woman who confronted me, had told me I left her there for far too long, for a dangerously long time. I don't disagree, that even five minutes is far too long to leave your baby anywhere. I was just so worried it was longer than that. How could we have left our girl there. How could I have done that as her mother! I love Karis so much, and wanted another daughter so badly after we lost Koralyn, and then in a moment of chaos I just forgot her in her stroller. I forgot her because I was stupidly so concerned with making it onto the train in time. I was so concerned about the diaper bag and the boys fighting and the long line. 

 I cringe to think if the train had left earlier and we were on it, how it would have all played out? Would we have realized loading up, that none of the adults actually had Karis? Or would we be down the tracks when we noticed? I can picture myself panicking even more and pulling the emergency line in the train car. Terrified of where my baby could be. Guilt consuming me. That gut wrenching punch when you realize your child is not with you as you thought they were. I just keep playing out all the different scenarios in my head of what could have happened. I keep thanking God for protecting her during those minutes we left her sitting there. I have even wondered, did she realize we had left her? Was she crying before those nice moms came to her side? Was she scared? It makes my heart hurt to think about these things. 

During the time standing with our group back in the depot I continued to cry quietly. Just the weight and the guilt was sinking in. I know I said earlier that when I went back to Karis' stroller I laughed nervously. I have always laughed at very inappropriate times it seems. You know, the nerves take over and its like a defense mechanism. I laugh during heated arguments or serious events. So awkward! I wonder now if I looked so nonchalant laughing about forgetting my child in her stroller. I wonder if that is why the woman in line spoke up and others joined her; because they felt like I needed to realize how serious it was to leave my baby alone in a theme park. Because they needed to put me in my place? Who knows their motives. I know I never will.

 During that time before the train loaded, I had 3 women come up to me and comfort me. They had all seen what had happened. They were all standing in line watching it play out.They each made a separate effort to come find me.  Each hugged me and told me not to worry about the words of those strangers. One told me that we all make mistakes as mothers and any mom knows that. One told me that she could see I was in distress and sick over what had happened and that no one needed to heap shame or guilt on top of what I was already feeling. These women saw a fellow struggling mom,a mom with multiple children, tired and frazzled. Trying to keep track of it all. They saw me and so kindly came to comfort me and try to build me back up. I am so grateful for those sweet women. For their love and reassurance that it was okay. One mistake does not a bad mom make. Lets face it moms, don't we make some mistakes every single day? We want so badly to do it right, to be perfect but we just can't. That is okay. Some mistakes are big, like forgetting your child at school or in their stroller at a theme park. Some are small like forgetting to wash school uniforms or their sandwich in their lunchbox. 

The boys enjoying the train ride and watching the train robbery during the stop! 

Later that night, Amos and I were talking about the events and how usually he would get Karis out of her stroller while I got the diaper bag. We came to the conclusion, that due to the earlier chaos and the sleep deprivation, my brain just went into autopilot and I assumed he had gotten her. In reality he had walked away to tend to Abram. There were three other adults in our group and honestly, I was the first one to realize Karis wasn't with us. I say all this not to make excuses or pardon my mistake. I say all this to point out that we are all human. Deprive us of sleep, change our routine, add in crowds and loud noise, and well mistakes can happen. Awful, terrifying, mistakes. I point this out too, because leaving or forgetting one of my children is literally one of my biggest fears. With four kids, three being loud and rambunctious boys, I often feel stressed and frazzled. I always ask Amos when we get in and out of the car if we have all the kids. I am constantly checking to make sure all are with us. If our routine changes for a day, I will often panic, only to realize the kids are all safe and accounted for even if they are not with me. This is a worry for me almost on a daily basis and yet, I forgot Karis in her stroller at a theme park. It can happen to anyone, it really and truly can.

The next day, all together, all was well.
 This time we forgot the stroller but Karis wasn't in it! Ha! 

Karis and Daddy, right after our train ride!
I don't think we put her back in the stroller that day!

I later said to my friends and Amos, that isn't it funny that I had 3 women, 4 including Amanda and Amos and Steve reassure me it was okay. They all spoke kindness and words of life back into me. But the strangers in line? They still seemed louder. I still kept hearing them tell me how unacceptable of a mother I was. Now again, I am not sure if those strangers meant their words for good or for evil, but they were filled with judgment and scorn. They hurt, they shamed and embarrassed me. 

I tell you all this story because I want you to see a few things. I want you to see that moms can love their kids so much. We can pray for these children we are given before they ever arrive. We can do our very best and want so badly to be perfect. Moms, we will still fail and make mistakes. That is okay, really it is. Mistakes and failure are not what we should strive for or even settle for. We should accept that we so badly need Jesus and each other to help us along this mothering road. Strive for excellence but forgive yourselves when you fall ever so short sometimes. Tell those precious babies of yours that you make mistakes too just like them. These moments are great opportunities to share our need for Jesus with them. To share the gospel with them. We live in a fallen world and none of us can ever be perfect for each other, even when we want to be.

Second I want to thank Amanda and those other sweet moms who came to me in an ugly and embarrassing moment and spoke life and kindness into my hurting heart. Thank you, don't stop doing that. Don't stop picking other women up when they have fallen. This world needs kindness and grace so badly and in that moment each of you became kindness and grace for me. Because of my issues with self worth, something like this can literally cripple me with guilt and shame, but because of you, I can forgive myself. I can rest assured that I am not the only mama who has made a mistake or even the only mama who has forgotten her child in a moment of chaos and exhaustion. Keep speaking life ladies. Thank you so very much for lifting me up. I pray someone will do the same for you in your time of need, in your ugly or embarrassing moments. 

Lastly, to the people who spoke up to me about the error of my ways. Thank you for caring about our Tiny Sister and my mothering skills. Rest assured that because you spoke up, I don't think I will ever forget my child in her stroller again. I am not sure if you meant your words to hurt me, or to teach me. They did both. I hold no ill will towards you. My only request is that you would remember that most of us really are trying to do our best. Our best at life and at mothering. Remember your early days as a parent, try and remember some of your mistakes and scary moments. Be soft and kind. Please, the world is so broken and hurt, fellow moms need to speak life and be kind to one another. Lets all try to leave our judgement at home locked away, or better yet thrown in the trash where it belongs. 

Being a good mom can be so hard and scary, even when you are just trying to have a fun day at a cute little theme park! On that note, moms of multiple children, always, always, always, check the stroller before boarding the train, plane or automobile! HA! 

Being Brave

I have been having a really hard time lately. I thought that it was the move, and all the stress that goes along with that. But just in the last week I am coming to realize I have been in a dark place for a pretty long time. One of my sweet friends pointed out that I have been struggling far longer than I realize. After she told me that, I sat and really thought about it. Sat and thought and asked myself, how long have I felt this way? Overwhelmed, exhausted, not finding any joy in the days. Feeling stuck and unable to cope with even the simplest road blocks or daily tasks.

 I mean I get by, I function. I continue to do the laundry, clean the house, and help the kids with their homework. I still manage to cook dinner most nights and get groceries once a week. I attend basketball games and field trips. I change diapers and play blocks with my 3 year old son. I get up every single morning and do what I am supposed to do. But come 5 or 6 I am drained. I am spent, and many days I feel spent by 1 in the afternoon, or 10 in the morning. I am surviving. Barely, I am barely surviving. Only Amos and my older boys see my exhaustion and struggle. Like my Mom, I hide it well when out in front of others. I find all the noise that comes with having 4 kids very overwhelming as of late. I am finding it hard to make simple decisions, confusion seems to be the theme in my brain most days now. I feel super irritable a lot, too much in my opinion. I am sure too much in my sweet husbands opinion too.

The problem is, that I have kept making excuses for why it may be that I feel this way. Moving, traveling, having two toddlers. Being super busy with 4 kids and a fixer upper for a house. Having 3 babies so close together. All of these things are true. I am starting to believe though, that they are just small symptoms of a much larger problem.

 So I have asked myself this past week how long have I felt this way? I thought back to this summer when we traveled to New Mexico for Amos' job. I drove up to Albuquerque to pick up a friend and visit my Mom's grave. I drove alone with my 4 kids and its about a 3 or 4 hour drive. I have a hard time driving long distances because I tend to get very sleepy, which is dangerous and scary. Anyway, that trip was rough, both physically and emotionally. We were traveling at the end of July and this happened to be the day Koralyn died, July 25. I was able to pick up my friend and take her down to Alamogordo to help me with the kids for the week.Not before I locked my keys into my running car with my sleeping baby inside. Luckily I was with my cousin and we were able to get a locksmith out quickly. After seeing me and hearing my story the sweet locksmith didn't even charge me a dime. It was a blessing for sure to experience kindness in that hard moment. I was able to go buy flowers and visit my Mom's grave before picking up my friend.

Visiting my Mom's grave on Koralyn's Death Day July 25, 2016

 After spending the week in Alamogordo, Friday came and it was time to drive my friend back up to Albuquerque.That morning, I was feeling overwhelmed and exhausted, and she was feeling stressed about making it to work on time later in the day. We were running late and tensions were high. I yelled at her and we started fighting. In our long friendship, we have only fought a small number of times. Basically after arguing, and then being pulled over by a police officer for unknowingly speeding, I cried most of drive back to Albuquerque and then again on the way back to Alamogordo. I was crying from pure exhaustion, crying because I was home in New Mexico but I didn't really have any home to go back to anymore. Crying, because my mama was in the ground, instead of driving down to Alamo to be with me and my babies. Crying, because my best friend and I had a rare fight and on top of all my other emotions that felt devastating.

Spending the Day in Tularosa during our trip back to NM. 

 As I have been thinking this week and talking with Amos, I pinpointed that as the beginning of this dwelling in the dark. He lovingly told me he believes it started before that. This revelation shocked me, and made me ask myself again, okay how long has this been going on? Truth be told, I don't think I can pinpoint it. Has it been since my Dad came to live with us right after Abram was born? Since his death in August 2014? Since Karis' birth in October of 2015? Since losing Koralyn way back in 2012? Honestly I don't know. For a long time I felt like I was doing pretty good. I had hard days and weeks but I was coping and still able to find joy in things.

It will be 5 years this year since the death of my Grandma Juanita on March 31, 2012. Grandma, as everyone who knew her called her, was really my second mom. She lived right next to us or with us for all of my growing up. I was unable to be with her after her stroke or attend her funeral because I was 9 months pregnant with my medically fragile daughter. On April 9, 2012 Koralyn Marie was born with HLHS. On May 20, 2012, two days before my 30th birthday and seven weeks after my Grandma's death, my mom was killed at age 55, in a motorcycle accident.I flew home to New Mexico alone to help my sister bury my mom. Two months to the day after we buried my mom, Koralyn died on July 25, 2012 from massive blood clots in her heart that formed after her second stage Glenn procedure. We  had a short break from change, turmoil, and tragedy. Then on November 13, 2013, Abram Jace was born! My dad found out before Abram's birth that he had aggressive lung cancer. He came to Dallas in December of 2013 after being told in St. Louis that nothing else could be done. Abram was a month old the day Dad came to our house. For the next 7 months my dad lived between our home in Midlothian, and my Aunt and Uncle's home in Dallas. He decided to fight his cancer and receive his treatment at Baylor in Dallas. After initially seeing success we were told in late June that his cancer had spread all over his body and he needed to go on hospice. In July he went "home" to his beloved New Mexico with my sister to die at her house on August 2, 2014.  Shortly after that, I got pregnant with Karis. During my pregnancy with her we once again were prenatally diagnosed with heart issues. Karis was born  October 16, 2015 with an ASD and VSD.  Before that we had changed churches, which was a very difficult decision to make since our Matthew Road family had loved us so well during this excruciating time in our lives. Daniel and Kim were so priceless to us, not to mention the rest of the church body loving us and taking care of us.Then because we are clearly insane, Amos and I decided it was time to move in October of 2016.

To say the last 5 years have been a whirlwind is an understatement. My head still seems to be spinning and I can't wrap my mind around all the changes that have taken place. My heart aches because I feel like I have lost most of my family. I am trying to figure out who I am now. I have taken pride in the fact that I keep functioning. I keep going and fighting and functioning for my kids and my husband. I have taken pride in the fact that through all of this, I haven't lost my faith or become angry with God. I still trust and believe that he is Sovereign over all of this. That he has a reason and is working all things for good, even if that good doesn't come here on earth. I still go to Him with my pain and struggle and my praises too.

But friends, I don't know how much longer I can just keep functioning. I am recognizing that I am having a harder and harder time coping with normal life and 4 kids. The littlest things seem to deplete, overwhelm, and confuse me. Stopping me in my tracks, and making it hard to regain focus or composure. I feel exhausted most of the time. I long for quiet and solitude. I find myself not wanting to be around my children or my husband because I feel so completely drained and overwhelmed. Everything feels hard. Everything. At the same time I have been struggling with great loneliness and feeling unseen. It sounds contradictory and I guess it is.

I am strong willed and emotional. I always have been, and I don't see that changing. Its that strong will that God built into me that has helped me to survive this far. So to come to the realization that I may need help now, isn't easy for me to admit. As I said, I have taken pride in my ability to not need much help up to this point. It is silly really, because I realize that I have only survived and kept functioning by the Grace of God and with the help of my dear sweet husband, my closest friends, and my wonderful counselor Ms. Jackie. (I haven't been in active counseling since before my dad died due to Ms. Jackie retiring. I thought I was well enough to no longer require counseling) I realize and have known all along really, that it hasn't just been me, but all these loved ones, and God's great grace that has carried me this far.

My sweet friend Stacie told me that it shows strength to admit and realize you need help. To ask for help is a big step. She is right, and my friends that have stepped alongside me and encouraged me during this have been such a help and a blessing. I am learning there is no shame in admitting I need more help. It doesn't mean I am weak, or have failed, or that God has failed me. It means I need to let others help me, I need to let others show me the love of Christ and be His hands and feet to me. Admitting this is not easy,  because I tend to people please, and don't want to inconvenience anyone.

All of this to say, that thanks to my friends who love me, and aren't afraid to be honest with me, and my husband who supports me so much. I have decided to step out of my comfort zone and the dark place I find myself in, and ask for more help. I am going back into counseling for myself. (I have had Asa back in counseling and focusing on his anxiety and grief) I have made a doctors appointment to get my hormones tested and I realize I may need to go on a low dose medication to help me through this time. (Medication scares me, and I don't like taking anything)

I think what has been so confusing for me the last few years is that because of all of my losses and changes I don't know if what I am feeling is grief, complicated grief, postpartum depression, or if it is a combination of all these things. I guess that's why I haven't asked for help before now, because I am honestly unsure of what help it is I need. So I will start again with counseling and go from there.

I tell you all of this because I am well aware of the stigma surrounding grief and depression. Our society still tells us that we need to pull ourselves up by our bootstraps, by our faith, by our sheer will and move on. Anything less is weak and defective. I am here to say that this is not true my friends. I still take great comfort in my faith in a sovereign God. I am so glad I have a Savior, Jesus who refused to leave me in my brokenness. He came down and became broken too for me and for you. Because of this, because of Him, I still have Hope for my future. I still have an extremely strong will, and yet, I am tired and need help. That is okay. Needing help doesn't make us defective or less than, it makes us beautifully human, beautifully broken.

I refuse to stay here in this dark place because of some standard, because of some stigma that if I need help to stay emotionally and mentally healthy I am less than. Who are we kidding? Who is it that we are trying so hard to impress with our ability to be okay, to be fine, well, and good, no matter what life throws at us. This my friends is a farce. Don't carry that weight on your shoulders by yourself. Truth be told we all need help at some point. There is beauty in realizing, admitting, and asking for help. Being brave is deciding to step out of the darkness and fight to find the light again. Don't let anyone tell you being brave is hiding in the darkness and hoping it gets better. Being brave is fighting to find the light, walking through the darkness until you see it. Even if at first, it is nothing more than a tiny glimmer. It will get brighter if you keep pushing back the darkness. We can't do it alone, we all need each other and we need permission to be broken and ask for help.I am going to be brave and ask for help. If you are hurting and in the dark, and you can't seem to fight to find the light again. Be brave, be brave with me. Tell someone. Tell the people who love you. I refuse to be anything but myself, anything but open, honest, and real. Thank you to all the ones who love me for that. Thank you so much.

The Gift Of A Rainy Day

We moved to a new house back in October, and it has been really hard for me to adjust to our new place. Asher, our 7 year old, has also had a really hard time, he tells me all the time how much he misses our old home. He asks to move back, he wants to tell the new owners they can leave now. Understandable, we moved to that house when he was about 8 months old. It is really the only home he has ever known. So many memories are wrapped up in that house on West Highland.  Sweet boy is like me, he gets attached to inanimate objects easily and profoundly.

Anyway, its been a hard few months of unpacking and settling in. Last week I was able to slow down and have a few sweet days at home with just my littles while my big boys were at school. Slow and wonderful days, where I got to really cherish Karis and Abram. Cuddling them, making lunches for them and sitting down to enjoy them together. Playing on the floor with blocks and baby dolls. Just such a sweet, sweet time together. Its strange really having older and younger kids. Some in school, while the others are still tiny, needy, and at home. Like living and balancing two different worlds at once. Sometimes because of that, its hard to enjoy either world. The school events become tricky when you have a baby and a toddler to juggle. Nap time becomes a struggle because of school pick up and drop off. Homework is hard to do when a toddler is yelling and throwing Hotwheels at you,  and a baby is crying in her highchair.  I feel so stressed a lot of the time trying to balance these two worlds. Its nice when we can have good days where both worlds seem right.

Since these sweet days at home last week, I have been thinking a lot about my sweetest moments with Koralyn. Much like balancing my 4 kids at home, trying to have normal, sweet moments in the NICU is tricky. Not impossible, but very tricky. There is limited privacy in the NICU, even though we were at one of the newest, and best, with private rooms, which is still pretty rare for the NICU environment. Doctors, nurses, therapists, phlebotomists, are in and out of your room all day every day. Not to mention the wires and tubes connected to your baby. After living the NICU life you will no longer take for granted a baby you can so easily lift out of a crib with nothing attached to slow you down. Oh how precious that privilege is to cuddle a baby when you want, for as long as you want. I often ached to hold Koralyn, to comfort her in my arms. One of the hardest moments was when she was hooked to the ventilator, which kept her breathing when she couldn't do it on her own. Usually right after surgery or when one of her medical crises would hit. She would cry, yet no sound would come out. All the other signs of crying were there. The troubled expressions, the tears rolling down her cheeks, the open mouth where the sound should be, the flailing of a baby upset and protesting, and yet no sound. One of the hardest and strangest things to witness. The lack of  sound to go along with her cries, seemed to make all the other signs of distress more evident, more gut wrenching and hard. That together with the fact that I wasn't able to just scoop her up and comfort her was so very hard to take. Your baby's wails are even a gift, who knew right?

Koralyn, a week or so after her first open heart surgery, still connected to the vent.

Peppered in with the countless hard memories, are a few incredibly sweet ones that I hold so near to my heart. These are the memories I wish to relive, the ones I replay in my mind by choice. The ones I recall when we go visit Cook Children's. Her room was in the corner of the cardiac section of the NICU. The cardiac section was appropriately called sweetheart street. Her room we had graciously been moved to was room A11. It was bigger then our two previous rooms and had a wonderful view right out to the front entrance of the hospital. Tall windows to look out onto the comings and goings of a world that we felt disconnected from. Our rooms before our beloved A11 didn't have windows to the outside world, they were also a lot smaller and right up next to the nurses station. Room A11 was so much quieter and more peaceful, add in the big windows to look down on the entrance and the grassy area with swings and it felt like our own little NICU apartment. I would often stand at the windows and take in what was happening outside. I saw several kids get loaded on buses to attend some week long camp Cook Children's was sponsoring for them. Watched as a NICU reunion unfolded, complete with bounce houses and yummy treats.  Saw many patients wheeled out in wagons, their moms and dads happily loading balloons, flowers, and bags of dirty laundry, finally getting to go home with their child. I would often imagine our day of discharge and how glorious it would be! What a happy moment, finally being able to strap Koralyn into her carseat, wave goodbye to all her wonderful nurses and doctors, and drive her home to really start living. Of course that day never came for us. The memory of leaving without her, is one I often recall, even though I would rather not. All this to say that room A11 was a gift to me and now when I return for an appointment my kids always ask to play on the lawn right outside those windows. There are swings there, big blue porch swings, and I can sit and look up to the windows of her room. I wonder who has lived in that room since her time there. I will often pray for those families. My heart aches and longs to be transported back up into that room. To stand at those windows once more, holding my sweet girl watching as the world goes by outside, what I wouldn't give for one more day.

Our corner room. Daddy holding Koralyn, with Uncle Evan looking on, and the windows behind him. 

The sweetest memory for me came on a rainy day in May. It was pouring outside and Koralyn and I were safe and dry inside her room. It was a quiet day, she was stable, not much needed to be done. i can't recall if it was the weekend Amos was attending his brother's wedding or just a weekday. I say that because weekends were always quiet in the sense that most of the doctors and therapists were off, the hustle and bustle happened mostly during the week, unless there was a crisis of course. Anyway, I had Koralyn and the room all to myself and it all felt so normal. I sat and cuddled her in the big purple rocking chair. We both fell asleep huddled under her blankets, (falling asleep in the chair with your nicu baby is a no no and the nurses are supposed to wake you up) I have a feeling my sweet nurse let it slide just for that one sweet day. I remembering dozing off and waking up to Koralyn fast asleep in my arms, mostly unattached from wires and tubes except for her regular 24/7 monitoring system, which kept track of her sats, heart rate, blood pressure, etc. The nurses could see it at all times up at their station and we had our own screen above her bed. It would alarm with different beeps when something was either too high or too low. I hear the saturation alarm to this day. Bong, bong, bong. We always struggled so with her sats.

The view from room A11. Sometimes the boys would sit on those swings and wave up at us. 

My couch where I sat and slept, and another great image of the windows. Windows for sunshine and connection to the outside are so important during a long hospital stay. 

Waking up to Koralyn asleep in my arms, realizing I had relaxed enough to have a sweet nap with my girl was so nice. I sat there and took it all in, the heavy rain pounding outside, my baby girl asleep in my arms, our cozy little room, just me and her. Time stopped that day, all seemed so normal and right. It was such a gift. I sat with her for what seemed like hours. The day went on, I got up to eat but went back to the chair for more sweet cuddles later on in the afternoon. This simple day will always be one of my very best parenting days of all. Just such a gift. Rainy days at home have always been a favorite of mine and everything that day just seemed so right and perfect even though we were still in the hospital, still connected to wires, still wanting and waiting to go home. In the midst of that we got to experience a glimpse of perfect. I remember sitting in that chair with her and telling her this is what it would be like at home. We would have more days like this, perfect, cuddly, rainy days at home. I remember laughing and telling her they may not be as quiet with her two stinky brothers there but they would be just as glorious!

The last time I was able to hold Koralyn in our purple chair in room A11. This was the morning of her surgery. We got to linger here for longer then expected. Another gift to me. 

Remembering and recalling this sweet day with Koralyn, helps me be a better mom to my four babes still living on this earth. It reminds me that even when there is chaos, and chores, and work to do, sometimes God gifts us an opportunity to slow down, breathe and take it all in. I have such a hard time doing this, I always have a To-Do list that is never ending. I am always trying to stay one step ahead of the laundry, or the homework or some other important mothering task. Every Once in awhile though, like last week I decide its time to slow down and enjoy the gift of my children. The gift of getting to spend my days with them. The gift of sitting on the floor playing blocks and babies and singing songs. Oh if I could only remember more that its all such a gift. The world is broken and chaotic and so are we, but in the midst  of it all we can still find rest and Hope. I am ever so thankful for the gift of that rainy day with my sweet Koralyn. That day refilled my cup and gave me hope for the future with my daughter. It turns out that it isn't the future I envisioned when I sat in that chair with her and talked of more rainy days to come. Many have since come and gone since that May in 2012. These subsequent rainy days don't wash away the memory of what will always be one of the sweetest of my life. If anything, the drops and downpours, and the rainbows that come after, will forever be touched and tinted by that one precious day. Once the shock and great grief fade, we are left with sweet memories that help sustain us, and continue to grow us and teach us. I wonder will there be rainy days in heaven?