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