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?

Written in Stone

You never expect to have to pick out your child's grave. When you see the positive sign on the pregnancy test, you never in your wildest nightmares think to yourself that you will have to pick a spot to lay them in the ground in a casket, instead of in a crib in their room. This is every parents worst nightmare. This scenario is what people are imagining when they tell you that they just can't imagine what you are going through. Its an awful thing to have to do.

It was a very hot day in July when we picked out the spot we would lay Koralyn's body down in. The sun and its heat seemed extra cruel that day. We drove to the cemetery meeting our pastor and the caretaker to decide on a grave spot. We of course started in the baby and child section of the historic cemetery. They indeed have a special place to bury babies and children, because for so many the unimaginable happens everyday. I can understand why some moms and dads would want to bury their child in this section. In some strange way its a comfort to know your child's body is lying next to other precious children gone too soon. When you go, you are reminded of a mother's love because the baby section is usually the most decorated part of the cemetery. There are always balloons and flowers and special trinkets marking the graves.It reminds the aching mother's heart that she isn't alone in her grief, when she sees the other well cared for graves. A strange and sad comfort indeed.  It almost looks like a happy place where children might play, if it weren't for the stones marking the graves, indicating death resides there.

So it made sense that the caretaker would assume I would want my sweet Koralyn in that section as well. I remember in my shock and haze standing in front of the open plots we could choose from. There seemed to be no shade or respite from the heat of the Texas sun. I stood there hearing the nearby traffic stream by. Proof that the world was still turning even though I needed it to halt, if only for a moment. All I could think in that moment was how hot it was and how exposed it all seemed. Exposed to the cruel summer sun and the road where passerby could gawk at the sad sad baby graves as they drove past. I couldn't have my Koralyn in this spot, I hated it. I felt sick and I wanted to run. The caretaker in his Bermuda shorts and his Carnival Cruise t-shirt told us he had a few plots in the older historic part of the cemetery. I told him I wanted to see those please, so we all loaded back into our cars and drove to the back section of the property. We got out in a spot with two huge trees and several family plots around. I felt relieved. This spot was so much more beautiful to me. Surrounded by trees, other mothers and children and near the back of the cemetery instead of right up front. It felt safe. We talked about how I could install a bench and sit in the shade when I came to visit. We agreed this would be our girl's spot and eventually mine and Amos' as well. No matter where we ended up, our final place would be next to our sweet Koralyn. Amos said he wanted to be next to her so that others who came to this sacred place knew she wasn't alone. Our other children may choose to be buried somewhere else with a spouse, but Koralyn didn't get that choice. So we will eventually be placed next to her. In a way so that the world will know she wasn't forgotten or discarded. That she continued to matter to us through all our years. I can't tell you the love I felt for my husband, knowing he wanted to protect and honor our daughter even in death.

Fresh mounds of dirt above a grave is heartbreaking for the loved ones. 

We picked our spots and a day or two later we all came and watched as a tiny casket was lowered into the ground. In the days and weeks that followed I visited often, seeing the mound of dirt slowly settle back into the ground. We went and picked out a small pink stone with birds and a cross between Koralyn's birth date and death date. The cross instead of a dash, to remind us of our Hope. Christ was there in that time between those two days and he is still here now. Helping us breathe on our worst days and rejoicing with us on our best. That tiny cross between those dates reminds me that I can live because He lives. Christ lives after first dying on a cross for each of us, including my sweet Koralyn. This tiny pink stone in the shade of the trees has been a sacred place for me to go these last 4 years.The one place left on earth that is just Koralyn's and I can still mother her and take care of that spot for her. Visiting often, making sure it clean and always has flowers. Bringing different decorations for the holidays we celebrate. A heart for Valentines Day, A tiny tree for Christmas, balloons on her birthday. Her spot has helped me in my grief and in my need to still be her mother somehow while on this earth. I know she isn't there but I would like to think that she sees me taking care of her little corner on this earth, she knows it is because I love her and long to care for her still. Graves are more a comfort for the living than anything else really, and Koralyn's is no different.

The evening after she was buried we took this sweet wreath her nurses had bought for her to put on her grave. Her Pink Casket spray above that, was donated free of charge by Roberta's Flowers in Midlothian. Such sweet gestures to our grieving hearts. 

I have always loved to sit and just watch the trees in the breeze or hear the birds and look out over a large portion of the cemetery. One afternoon I decided to visit and I saw a large plot of concrete extremely close to Koralyn's headstone. Now in the historic part of the cemetery there aren't really any rules about grave placement or size. The caretaker told us that when we chose that spot and I acknowledged it, never thinking it would be a concern. There weren't any overly huge gravestones and while I knew there was someone buried in the spot above Koralyn, we had placed her stone traditionally at her head and facing East. I assumed the people above us would do the same, giving us our adequate space between. Turns out, I am pretty naive.

One of her birthdays. Our sweet, quiet spot.

My first thought when seeing the big rectangle of concrete was that someone close to me had decided to have a bench installed! I have always mentioned wanting one in that space to be able to sit on instead of always plopping myself on the ground. I whimsically thought some kind soul had decided to give a bench as a gift to us. Maybe Amos' was surprising me or a close friend. I held out this hope in the weeks and months that followed. I would drive by nearly every week expecting to see the finished product. Always holding my breath as I turned the corner, hopeful that it was indeed a bench and not some obnoxious grave marker. Months seemed to go by and my anticipation had waned because each time I would go to see progress, the same old rectangle of concrete would be sitting in the ground. The day I asked Amos to drive by I wasn't expecting to see anything but the rectangle of concrete. We had all of our kids with us that day and it was shaping up to be a busy week at the end of the school year. I wasn't expecting to be gut punched and sucked into a massive wave of grief when I asked him to take me to Koralyns spot, making it hard to function over the next coming days. As we rounded the corner it came into view. Black, long, tall and huge. Right on top of my baby's grave. The angel looking down on the four stones placed in front of her. Her back facing my daughter's headstone. There were indeed two small black benches on either side as well. Once again, I felt shock as I slowly got out of the car and tried to process what I was seeing. We walked around it, taking it all in. Amos said he couldn't believe it, we were going to have crappy neighbors even in death (our luck with neighbors hasn't been the best, we have been robbed by some, littered on by some and taken advantage of by some) So his comment made me chuckle and agree. I think I felt the five stages of grief standing there looking at that grave. Shock, denial, anger,  well maybe not all of them, acceptance was not something I felt at that point. The boys had questions and I was trying to watch my words and reactions in front of them. Not wanting to say or do the wrong thing and be a bad example in this moment of grief.

I hate that Koralyn's grave looks off center now

So close

These stones sit at their feet instead of their heads

We eventually loaded back up and drove home. As the day wore on the wave of grief seemed to overtake me. I couldn't seem to understand why this person had decided their grave, which had been unmarked for 4 years, needed to be gigantic and placed basically right on top of my daughters headstone. It felt so cruel. There had to be a mistake. It was such an intrusion. My heart was breaking all over again. This place I thought was safe was being violated. It just felt as though the person was saying, your tiny grave doesn't matter, I don't care that your daughter is buried here. She had chosen to place her family headstone at the foot of her loved ones graves instead of at the head, essentially hiding my daughters grave from view and in my mind making it look like an afterthought compared to her epic monument. My heart hurt. I was worn and angry. It felt like just another blow. Another blemish, another gaping wound on something I thought was untouchable. I suppose this is why the caretaker mentioned the lack of rules. I suppose this is why most modern cemeteries have rules about size and placement of headstones. So that someone can't come along and put their gigantic monument on top of a baby's grave. I guess next time I pick a final resting place I will choose one with an HOA...

Needless to say everything was feeling very heavy that day. That evening I had to take Asa to his counseling session. My plan was to sit in silence in the waiting room while he was in with the counselor. I was in such a bad state of mind and a few minutes alone in a quiet room seemed like what I needed. A small respite from the demands of the day. Asa went in with his counselor and I sat there in that office feeling so weary and worn. I have been struggling over the last several months having several really hard days. After seeing our new cemetery neighbors I just felt so low and desperate. Desperate for rest from this life that seems so hard. I wanted to crawl out of my skin and just be someone else for a few days. Not the woman who has lost both parents and a daughter all in different and tragic ways. I wanted to remember what it felt like not to carry the weight of death and grief around each day. That freedom of not being a bereaved mother or daughter. I sat in that chair silently crying out to God. Telling Him how tired I was. How I needed Him to show up, I needed to feel His presence, needed Him to carry me. I asked him to help me come to terms with our new graveyard neighbors, help me to have perspective and grace somehow.

As I sat there silently praying for help Karis woke up in her carseat and had begun to not just cry, but scream really. I couldn't get her out and feed her fast enough it would seem. The little office building where Asa sees his counselor is home to several businesses and we were sitting in a little common waiting area. it is all tiled and open to the offices down the hall so you can imagine it can get loud and everything seems to echo. I was in such a bad mood, usually I can fake a smile but I just didn't have it in me that day. As I got Karis out her cries seemed to grow even louder. A woman came down the hall to make sure that someone hadn't left a baby at the door. Her words, not mine. I can't remember what she said before that but I just wasn't having it, I didn't want some lady talking to me during the one hour that I didn't have all four kids. I didn't want to be social. She sat down across from me and inwardly I groaned. She asked me all about Karis so I begrudgingly lightened up and told her. This of course lead to how many children we both had. Hers were all grown now and she even had two small grandchildren. This woman had the sweetest demeanor about her. She didn't mind that I basically growled at her when she walked up (I thought she was going to tell me to quiet my baby down or leave or worse let me know what she thought of my horrible parenting skills) I must have looked a sight as well. I had been crying most of the afternoon so I was red faced and puffy, not to mention my exhaustion was showing. This kind woman, with her sweet smile and her soft voice sat and talked to me for thirty minutes or more. She told me that she worked for a hospice company. She herself had cared for her mother in her home until her death. I told her about losing my mom and of course my sweet Koralyn. I opened up and confessed that I was having a very rough day and I told her about Koralyn's grave and our new neighbor. She listened and her eyes and words were filled with compassion. Eventually she stood to go saying that she had to get to a hospice consult in town. Before she turned to leave she looked at me and asked, "Can I pray for you and with you right now?" She sat back down and took my hand. We bowed our heads and she began to pray over me. She thanked God for me and asked for him to help me not carry guilt but to have grace for myself and peace in my circumstances. At the end of the prayer she thanked God that we had both listened to the Holy Spirit and been open to talking to one another in that moment in time.  Her prayer was balm to my aching soul. This woman and her kindness breathed life back into me. We finally stood and she hugged me. I thanked her for her love and compassion and told her how much I needed that prayer. She smiled at me and walked out into the sunshine, leaving me to sit in awe of a God who hears our cries and cares for us in our sorrows.

I sat there amazed at God's mercy. Not an hour before I was telling Him I couldn't take a step further. The drudgery of everyday life and the weight of grief had me drowning it seemed. I was weary and worn and I needed Him to show up. Boy did He show up. This kindhearted woman became His hands and feet for me that evening. She turned the corner and saw me all red faced and weary and decided to stop and hear my story. She was busy and on her way out but she felt a nudge to stop and so she did.  She shared her story with me as well, speaking of both her joy, and her pain, and how God has been in all of it.  I can't tell you her name, it was on her name tag, but sadly I am awful with names, always have been. I can see her face now though, and hear her words of empathy and affirmation. She was a gift to me, she helped me to remember that God hears and gives us what we need. She helped me to know there are still a lot of good and kind people in the world who care and love others when they see a need. She helped me remember that fellowship with fellow believers is sweet, oh so sweet; even when you only meet for a brief moment in time. I hope one day God gives me an opportunity to do the same for someone else who is hurting and worn. I don't remember her name, but I will never forget her and I can imagine one day in eternity we will meet. We will hug and laugh and she will know what her kindness did for my soul on that day.

As months have passed I have come to terms with our new graveyard neighbors. Yes it still hurts and sometimes I want to cry out about how unfair it feels. But just as God answered my prayer that day for strength He is helping me to accept this thing I cannot change and see it with new eyes. It helps me to remain humble, it helps me to remember to see other's grief and not just my own. It helps me to focus on the fact that this fallen world is indeed not our home, especially when our names and the date of our birth and death is written in stone and placed on the ground to mark where our body lies. The woman who decided to place the grave so close to Koralyn's has buried her husband, a grown son, and two infants. If I were her, I would want a big  monument too. Each time I go and my humanness wants me to be angry and bitter, I rely on God's grace and try to think of the pain she has endured. How now we share this sacred space, me and her. She comes to take care and honor her loved ones the same way I do. God asks us to walk humbly and to love deeply. Sometimes, most times if  I am being honest, I fail at this. Each time I visit Koralyn's spot now, I am reminded. Walk humbly and love deeply, even when it hurts and seems unfair. I would like to think one day Mrs. Pope and I will meet in heaven as well. We will laugh at the brevity of all these earthly possessions we try so hard to grasp. I will meet her children and she will meet mine and all will be well with our souls.

I have to admit, I thought this shadow was pretty neat.
It looks as though the angel is looking down at Koralyn's stone.

Missing Mom

      I have been missing my Mom more then usual lately. It's sort of like a dull ache that won't go away, with sharp stabbing pains every once in awhile. Triggered by a memory, or a smell or seeing something familiar.

    Mother's Day weekend was very hard this year. I try my best to celebrate my Mom's life instead of focusing on her death and her absence. I do good most days, but sometimes the pain and the ache, it just comes and it demands attention. Fighting it is useless. The best thing to do is acknowledge its presence and welcome it in for awhile.

   It started when all the Mother's Day items began popping up in stores. The usual things, cards, flowers, coffee mugs and jewelry. Then the commercials on TV and even the radio. The ones about your mother and how much she has done for you. The reminders are everywhere this time of year, it can't be avoided it seems. I know that I am a mother and therefore the holiday is for me now as well. Yet I will always and forever be a daughter, before I am a mother. It is just the way of things. Right now I have more years of celebrating my Mother than I do of celebrating my mothering. So to me, Mother's Day brings with it, fresh memories and a flood of pain. A longing for the should have been I suppose.

When I flew out to help plan my Mother's funeral and bury her, the outpouring of love from her school where she worked was just amazing. She was a secretary, had been for most of my life. Working at many different schools along the way, wearing many hats. She was always endearing her
 co-workers to her, with her sense of humor, her ability to relate and her bend towards compassion and empathy. My mom didn't waste her pain, she used it to relate to others when given the chance.

My sister and I went to her school in the first days following her death. Vista Grande Elementary School.  It was so amazing to see the cards from the children and the staff. So many words of encouragement and love for us to take in. There were little gifts and flowers left by many of the students as well. I remember walking over to her work area. She had several pictures of Koralyn hanging on her cabinet for anyone who passed to see. There were filing boxes sitting atop an adjacent desk with her name written on them in her very distinct handwriting. It made my heart ache for her, sting with pain. Sitting next to her keyboard was a piece of chocolate cake. I remember one of my nephews saying to me; look Aunt Kenda, Grandma was eating cake! I laughed and told him no, I am sure someone is filling in for her and that is their piece of cake. I was kindly corrected by her sweet co-worker who told me, no, indeed that was my mom's piece of cake. They all knew how much my mom adored cake so they had gone out that morning and bought one. They cut a piece and placed it in her spot for her. It was just so sad and so sweet. We stood and laughed about how much my mom loved cake. Talking about her frequent advice that if you skipped a meal, you could have your cake and eat it too! Growing up, she often allowed us to eat cake for breakfast. She would laugh and tell us that it was fine because after all, a piece of cake had all the ingredients of a good breakfast. Milk, eggs, flour. Every once in awhile I will still enjoy a big slice of cake for breakfast, and like my mom cake is by far my favorite dessert!

Just a small portion of what filled the office.
Mom loved Vista Grande and Vista Grande loved her! 

The VGE Table at her service.
Filled with all the tokens of love and care from her school. 

After we reminisced about my Mom's love of cake, I continued to look around her desk. She died the Sunday after Mother's Day in 2012. That year of course I spent my Mother's Day in the NICU with my sweet Koralyn. Weeks earlier I had fretted over what to send my Mom that year. Of course it had to be something I could make or order on the internet. To be honest I dreaded giving my Mom gifts. She wasn't too easy to buy for, and I had seen several of my gifts to her stashed in drawers around her home when I would go to visit. It was kind of a running joke actually. That year I decided to make her a gift using Shutterfly and a recent picture I had taken of my boys in the Texas Bluebonnets. A sweet pictures of brothers holding hands and exploring. I made her a pen holder for her desk at work. It was a simple and practical gift. I had hoped she would actually be able to get some use out of it and enjoy seeing the boys everyday sitting on her desk. So when I went to her space and it was sitting right there in her spot full of pens, I was just struck. I stood there staring at it. Her friend Gail, walked up to me and smiled. She told me that my Mom was so proud of this simple gift. She had gushed and talked about how busy and overwhelmed I must have been, and what it meant that I still took the time to send her a gift for Mother's Day.

That pen holder now sits on this desk I am typing from. I am not sure Gail even remembers the moment, or the words she said to me that day. I will never forget those life giving words she spoke to me. To know my Mom thought of my effort and knew I worked hard to show her I cared, it just really meant so much in that horrible moment. That story Gail told to me was such a gift. It still warms my soul now when I look over at the pen holder. My Mom, she knew in that small simple gift that I was thinking of her, that I cared enough to make an effort even in the dark season I was in. Knowing she knew the true intent of my simple gift is priceless. I take comfort in the fact that even though it was hard and I made and sent that gift while sitting by my daughter's hospital bed; it was well worth it. Her last Mother's Day gift from me, is now a gift to me. Reminding me, that even the small efforts made out of love matter. That they may indeed matter more when it seems harder to give of yourself and make that effort. It isn't wasted and is always worth it.  My mom, still teaching me and telling me to show up and try; through a simple gift made for her and yet given back to me in more ways than one.

Notice the cake, and the pen holder sitting at her desk.

She was so proud of her Koralyn Marie. I had no idea she had done this.
 It melted my heart of course and made me miss her even more. 

Friday will mark 4 years since the day she was killed riding on the back of a Harley Davidson Motorcycle. I have read the accident report more than once. In my mind I have relieved that day many times over. It does no good for me. Only brings deep pain to think of my moms last horrific moments of life. I have put away the reports since being home from the hospital with Koralyn and I try not to go to the place where I think of her last moments, it just isn't healthy to dwell in that place, and I know that.

Today I made a trip to Arlington for an appointment and some birthday shopping for Amos. I was alone, which of course is pretty rare for a mom of 4 living children! The point being that I had quiet and time to think as I ran my errands. Going back to my old stomping ground before I moved to Midlothian. My Mom made several visits to Texas and we spent a lot of time in Arlington.

My first stop today was USMD Hospital for some medical tests. This hospital also houses a lot of medical offices, including the office of my first son's old pediatrician. When Asa was born my mom came to visit and help take care of us during his first week at home. Of course we had to make his first doctors visit and my mom came along to help. Today as I walked in those double doors the memory of that visit came rushing back. Remembering my fear to take my tiny baby out and how awkward my body felt. Having my mom there was such a comfort. I recalled today how she had admired the building, talking about what a nice facility it was. I can tell you right where she was standing when she made these comments. Such a simple memory and yet when it came flooding back my heart seemed to physically ache for her. I whispered under my breath, oh mom how I miss you so. I wish you were here with me now. I wish I could call you and talk. Oh how I want to hear your voice.

After my appointment I drove past the Spaghetti Warehouse and recalled another simple memory of her. We had taken her to eat there during one visit and she just loved it. She talked about how neat it was and how good the food was, Italian was always one of her favorites. Just another memory seemingly popping up out of the blue.

Lastly I made my way to the mall to buy a few gifts. I parked in the garage next to Macy's and as I pulled in I suddenly remembered another funny incident with my mom and Asa. It was a day we were heading to the airport so mom could catch her flight back to Albuquerque. We had some time to kill so we decided to head to the mall for a little while. It was very hot that day so we had parked in the shade of the garage. My mom was helping to get Asa out of the car and walking him towards to entrance to the store. She wasn't paying close attention and didn't realize the slope and drain coming up. So needless to say down Asa went with mom tumbling after, right on top of him! Oh it was a tragedy with a few cuts for both Mom and Asa. We made our way inside and Asa insisted he needed a bandaid. Luckily there was a booth with information and first aid and they rescued us from our plight. Once bandaged, we were on our way to enjoying our little trip to the mall! My mom felt so bad for hurting and scaring Asa of course.

That wasn't the first time she had injured one of her Grandsons! Years earlier, at the 4th of July Parade in Corrales, she had dumped poor sweet baby Jack out of his stroller and into the dirt! It left a few scrapes and bruises on his face, but he was okay. I am sure it hurt mom more then it did Jack! Later we all had good laughs about it! Once everything was healed of course!

Today it seemed memories of my Mom were surrounding me. It has been that way for awhile now actually. As I drove, I wondered the why my grief for my Mom seemed to be right at the surface lately? Could it simply be because of the month we are in? May, so much happens this month. Mother's Day, Mom's day of death, my birthday, as well as Amos'. So much joy and sorrow, death, and life, mingled into one month out of the year. Almost too much for one soul to take in really. Could it be because now I have Karis. Another chance to raise a daughter, so I feel closer to my own Mother? Longing to have her here to see my sweet babe and cheer me on like only a Mother can?

All I know is that it is true what they say. Grief comes in waves and a big ol' wave has come to my end of the ocean. Now instead of being taken under by it, as in the first fresh days of my grief; I get on my board and I ride that sucker to shore. Which means, I feel the pain, I let it come and take me for a ride, remembering those times past. I allow myself to hurt and feel grief that they are gone, that she is gone and on this earth, I will never see her again. But I keep on walking and living and breathing at the same time. Much like what I did today. No one in that hospital or that mall knew of the pain I was feeling. I could feel it in my heart and continue to function with my body. That's not to say there isn't a time to cry, still, four years later. As long as there is life in my bones, I will sometimes cry tears for my Mom and that's okay. I can hear her now telling me, Kenda you ride that wave. Enjoy the view from the top and feel all there is to feel. Be sad but also laugh and rejoice in the sweet memories. Don't fight the waves when they come. Get on your board and ride them with grace and dignity. And when that wave is over and it has carried you back to shore. Get out of the water and go on living on the land until you need to go for another swim in this vast ocean of grief that will only end once your time on Earth is through.

Mom, teaching Asa to light the Luminarias on Christmas Eve

Mom and I helping Asa open his Birthday gifts

Oh mom, I am doing my best and I miss you so. I love you,  Roo.

The Could Have Been.

I saw her when I first walked up to the counter to place my order. She was sweet and busy helping customers get their drink cups and condiments. I smiled at her and went about my business of ordering lunch for my rowdy brood. The boys were all requesting things as I tried to order, which drives me nuts and makes me feel so harried in the moment. She watched as I pleaded with my boys to stop, quiet down, find us a table, please don't play with the drink dispenser. It was her that smiled back at me then, reading the strain on my face. 

Later as I sat at the table eating my burger and fries, the girl came and sat with what I believe was her father and siblings, or close friends. She was on break I suppose. She had taken off her work visor and was waiting patiently for her food to arrive. I couldn't help but look over at her several times. She was enjoying the conversation very much, and when her food came she asked for the spicy ketchup with her fries.

 It was in that moment that the grief hit me full force. Amos looked over at me and jokingly asked if I was having a stroke. I had stopped dead in my tracks, burger sitting in my hands, halfway in my mouth as I tried hard to will the tears not to come. I had been thinking of our Koralyn. Thinking about how when we were first prenatally diagnosed with her, and how they had gotten it wrong. Her diagnosis that is.  The doctor had painstakingly sat pushing and moving the ultrasound wand around on my belly. She had sighed many times in that little dark room and when she was done the floor dropped out from under us and our lives had changed forever. Seconds, it takes seconds sometimes for your life to change, to look nothing like all the plans you have ever made. She sat below us on her chair and explained that she thought our daughter had several markers for Down Syndrome and that she would also be born with AV canal defects, which were very common in a baby with Trisomy 21. I remember asking her if that heart defect was fixable. She assured me that it was, but from the looks of things our daughter's seemed rather severe. The doctor of course asked if termination was an option for us, we would need to move quickly as I was almost past the legal mark. We of course said no, that was not an option for us so our next step would be the children's hospital and the heart specialist. 

Bluebonnets with my boys and my big ol' belly!

Happy here, unaware of the storm clouds in the distance.

I remember when we left that office I walked into the bathroom downstairs to compose myself. I passed the mirror and stopped to really look at my belly. I always love being pregnant and having the big baby belly to carry around for many months. As I looked at my reflection I felt at peace. I knew that whatever was to come we would be okay. I knew God had us here for a reason and that he had formed this baby in my womb. I kept thinking that as long as my baby could make it, we would be okay. We would love her and give her the best of us, just like we had our two boys. I stood there in the dim light of that bathroom and rubbed my belly, telling my daughter, my sweet Koralyn, that we would be just fine. I told her we loved her and everything was going to be all right. I took a deep breath and walked out of that bathroom resolved to do the best I could for this baby of mine. 

Fast forward to a few weeks later and we were given a new diagnosis of Hypoplastic Left Heart. My very first question to Dr. Roten was, is this worse or better then our original diagnosis? Her answer was that the heart defect was much more severe, but a lot of people considered it a better diagnosis because it didn't come with a chromosomal defect. Meaning our daughter would in fact, not be born with Down Syndrome. I remember blurting out that I didn't think that was better. I also remember relaying the news to our family members and the resounding response being, well at least she doesn't have Down Syndrome. I know they were only coming from a place of love and concern for us, for our baby girl, but it hurt. I explained that I thought this new diagnosis was much worse because it had a high mortality rate. I remember saying to Amos, to everyone really, that I would much rather have my daughter here with Down Syndrome then in the ground with perfect chromosomes. I stand by that statement 100%

So it was there in the Whataburger on a Friday afternoon that I sat reliving those moments that will forever be seared into my memory. It was there as I sat watching this beautiful girl with her family that I imagined how different our lives would look if the first diagnosis had been the correct one. I sat imagining what my Koralyn would sound like at almost 4, wondered what provisions we would make for her, with a diagnosis of Down Syndrome with AV Canal defects. Imagined her brothers being so sweet and gentle with her as they are with their new Tiny Sister Karis. I thought about Koralyn as a teenager with Down Syndrome. What would her dreams be, where would she work, what would her laugh sound like? Would she wear her hair long or short. 

 It was then that my eyes welled up and a great wave of emotion overtook me. I sat holding my breath for a moment, I didn't want to cry in front of this room full of fast food patrons. Didn't want to worry my already anxiety ridden son sitting across the table from me. Luckily Amos' comment made me giggle. He asked me if I was okay and I told him yes I was, but that I was thinking of something I would have to tell him about later. 

This is how grief treats me almost four years out from the loss of my sweet Koralyn. I am able to grieve while living my life, with nary a person even realizing what is on my mind, except maybe my husband who walks this road with me, both separate and yet together. Sometimes we talk about the things that are triggers for us. How its so strange what will pull us back to those dark and scary moments of losing Koralyn. The many months of losing her really. Starting when we were prenatally diagnosed and ending when they laid her tiny coffin in the ground. It is comforting knowing I am not alone in this deep deep hurt of missing our daughter, while also trying to remain present in the life we have now. It is such a blessed life, and God has brought us so much healing. Our days are mostly sweet and even our remembrances of Koralyn are mostly sweet a balm to our souls really. 

But I believe there will always be moments that stop me in my tracks, those moments when I think about what could have been.

 For a moment I sat and watched a beautiful young woman who just happened to have Down Syndrome and I imagined my daughter in her place. She was happy, thriving. She was working hard at her job and enjoying the people around her. What I wouldn't give to have my sweet Koralyn fill her shoes. The man I believe to be her father sat next to her, proud and smiling back as she joked about a boy and sipped on her coke. She isn't just a chromosomal syndrome to him. Isn't  just a label or a diagnosis. She is his beautiful, smart, talented, living, breathing, daughter. She is a life, a soul, a gift. So was our Koralyn. I stand by my words I said all those months ago. I would rather have my daughter here with Down Syndrome then in the ground perfect, or at least more acceptable in this world's eyes. Dare I say, if you asked that girl's family if she is perfect to them, they would all gladly and with much wisdom tell you, yes, indeed, she is just what we needed. 

My first glimpse of Sweet Koralyn

Kangaroo Care, such bliss! 

Awareness

 October is Pregnancy and Infant Loss Awareness Month. If you have a Facebook account I am sure you have seen at least one post about it. I have mixed emotions about these "awareness" months. I think they are important and can be healing and beneficial. The skeptic in me wonders if anyone outside the realm of say, baby loss, or congenital heart defects, or autism, even cares. Do they take the time to actually learn more or find compassion or do they just keep scrolling. After all, if it hasn't touched your life why should you care really? Isn't that society's mantra now? So these months are important and needed but I think they can also be a source of pain for the grieving parent who wants everyone to be as passionate as they about baby loss or whatever it is they are walking through with their precious children. We all want to be heard. We all want someone to stand alongside us and tell us our pain matters and means something. That need is ingrained into our very souls. I believe put there by the God who created us.

 I have been pregnant 7 times that I know of. The experts will tell you, that most women are pregnant  and miscarry before even realizing it several times in the span of their fertile years. After having Asa, I had an ectopic pregnancy and then months later, a miscarriage as well. I was devastated after the miscarriage and just knew we were never going to be able have another precious baby. I struggled with feelings of guilt and inadequacy. I felt as though my body had failed me and that I had failed my husband. We were blessed months later to find out we were pregnant with Asher.

When people ask me how many children I have, I always say 5 (since becoming pregnant with Karis) It is not that those two pregnancies I lost early on don't matter to me. Really they have affected each pregnancy since. It is not that I don't believe they were babies. I do. I believe they were babies, humans, souls, whatever you want to call them, from the moment of conception. I believe and have hope that one day I will meet them and know them. It just seems easier at this point in my life to say 5. I don't want to have to explain all my losses and receive looks of pity or make some innocent person feel even more uncomfortable then they already do when I mention my dead daughter. I guess I don't mention those other losses out of ease for both myself and the person asking. Of course I often share those two other losses with women who share about their own miscarriages. It is so healing to know you are not alone in that pain and fear. To know there are others who have gone before you and know the heartache of losing a baby you so longed and hoped for. It is a real physical and emotional pain to suffer miscarriage and ectopic pregnancies. It shapes our subsequent pregnancies if we are so blessed to have them. Mom's who have lost babies will relate to the fear in the first three months with a new pregnancy. Every pain or twinge or new sensation brings with it the thought you could be losing the baby again. You are more careful about what you do during those first months. Wondering if it was something you did, or something you ate, or were exposed to. The reality and fear that it did, and can happen to you are never far away. At least that has been my experience every pregnancy since suffering those early losses.

    The other day I was on a field trip with Asa and a sweet mom asked me all sorts of pregnancy questions. One of her questions caught me off guard and hit a nerve. We were talking about the rough morning I had had, trying to get myself and 3 boys ready and to school by 8am. She asked me, now how many kids do you have? I said, this will be my 5th. Her response stung. She replied, yes but really 4 right? I swallowed and said well, no my daughter would be 3 now, but yes this will be my 4th child at home to take care of. It was an innocent comment, and I don't think this mama was trying to hurt my heart, yet it stung. It stung because I do, and always will consider myself a mom to Koralyn. I carried her to 39 weeks gestation. I worked hard to grow her and keep her inside as long as possible. I saw her on the sonogram screens countless times throughout my many prenatal visits, tests and never ending ultrasounds. I felt her move inside of me and we bonded just like the rest of my children. Then I spent her entire life by her side, fighting for her. Any chance I got to hold her, touch her, or care for her, I was there. I pumped milk for her. Even doing so on a packed flight while on the way to bury my mom. I learned to feed her through a tube and sat through countless discussions with doctors and nurses. Several times I sat in a tiny room for hours and waited for the phone to ring to hear the latest update from her surgeon. I held her swollen bleeding body as they unhooked her vent and she took her last earthly breath. I picked out the dress she would be buried in, one she should have worn home instead of to her grave. I laid her in her casket for the last time before the lid was closed, never to be reopen this side of heaven. I was, and I am, her mama and I will be until the day I die. So when someone naively says, oh but really you only have 4 kids right? It stings to the very depth of my mama soul. Most child loss moms would say the same thing. Their child was here, they mattered. To that family they still matter. They are loved and missed and cared for every single day.

Another comment that stings is when I will have a well meaning woman try to relate to my loss of Koralyn. I have often heard the statement, "oh I know how you feel, I have had a miscarriage myself." Now hear me when I say I know these ladies mean well. I know they are trying to relate and say something comforting, yet this statement stings as well. I think this is the other problem I have with Pregnancy and Infant Loss Awareness Month. As I said above, I believe life begins at conception. I believe every life matters and that the pain and grief of miscarriage and pregnancy loss is real and justified. Yet comparing an early miscarriage to infant loss is like comparing apples to oranges, as my Grandma would say. They are both painful and real, yet they are both very very different. As a woman who has experienced both I can attest to that. I think by bunching all of this together it really does neither justice. I was thrilled with each positive pregnancy test. I was equally devastated with each loss. Losing those pregnancies and losing Koralyn can't even begin to compare to one another. Its not that one mattered more or less, its just that it really is two very different roads. I once had a friend say, its like those ladies have lost a nail and you have lost a whole hand, and they sit across from you telling you they know exactly how you feel.  Their intention  is not to be offensive or hurtful, yet it is. Her analogy is a good one. This isn't to discourage you from sharing your own pain. It all matters, I think its the comparison that stings sometimes.

The closer I get to having Karis, the more I am realizing our family will never truly feel complete here on this earth. In many ways I suppose I naively thought having another daughter would do that. I know how silly that is really, it becomes more clear as the days slip away.As we come to the end of this chapter of our lives. The one in which I carry and birth babies, my heart longs to have all my children here with me. So that there aren't any stinging questions and painful absences. Even though I will only have 4 here on earth, my body shows the wear and tear of carrying 5 to full term. I worked hard to bring these 5 babies into this world and I want them all here to show for it. I suppose that is normal human nature.   We don't want to exert huge effort only to have nothing to show for it. Or worse yet, only a cold stone in the ground with a name and two dates that are far too close together. Every parent prays they will out live their children. They will be able to raise and watch them flourish. A lot of parents get that privilege and yet far too many do not.  We realize every day that there should be another little body in the car when we are driving everywhere. There should be another chair filled at our table every time we sit down for a meal. There should be another birthday party to plan, another bed to fill, another little person to love and hug and teach. There should be, but there isn't. Every time I look at our family photos I see the spot where Koralyn would be and my eyes long to see it in real time. My soul aches to have us all here together as it should be.

 I am realizing in many ways, Karis will open up new doors of grief we never knew existed. I know I have had to work through a lot of that grief even in my pregnancy with her. I have had to work through a lot of the grief of missing my mom and wanting her here during this time in my life. I am thankful for this hard fought healing. I praise God he is giving us this gift of Karis. Just like I praise God for the gift of Koralyn and her half a heart, and my crazy boys and their whole hearts. Learning that the hard, the pain, and the grief  of things can all be gifts. Learning to lean into it, instead of constantly trying to run from it. So that we can lean into our faith in Jesus who bore all of our pain on the cross. I think in many ways only those who have tasted pain and suffering can fully grasp joy and God's love for us. And who in this ever changing scary world hasn't experienced pain and loss in some way? It is impossible not to, if you live long enough.

 That is when I rest in the plan of God. That He knows what He is doing. He knows our hearts ache to parent Koralyn here in our home on this earth. He knows we grieve and probably will for the rest of our lives. Yet He knows we have hope in Him and we are waiting for the day He will wipe away our tears and introduce us to our sweet Koralyn. Oh what a day of rejoicing that will be!

Last night Amos and I watched a documentary called The Drop Box. It is about a pastor in South Korea who has saved hundreds of babies by creating a drop box. A place where desperate moms can abandon their babies, knowing they will be taken in and cared for. It is a powerful testament to this pastors belief in the sacred sanctity of all life. He talks at the end of the film what led him to create this drop box. It was his extremely disabled son Eun-Man. He speaks of his pain and questioning God about why. Why did you give me this baby instead of a normal healthy one? Why me? He talks about how he now knows Eun- Man his son, was a gift from God, not a burden. How God uses what the world sees are broken and discarded and he makes it beautiful and useful. I can't put into words really what a beautiful testimony it was to the faithfulness of God in the midst of great trials and pain. How this one man has taken his pain, and what the world says is ugly and unnecessary and he has used it to save lives and glorify God. That has always been my prayer with our sweet Koralyn. That God would take our pain, and turn it into His glory. If only we could all see the way this man sees. Beauty for ashes my friends. Beauty for ashes. If you know the pain of loss, know that you are not alone. Know that you have never been alone.

Psalm 34:18
" The LORD is near to the brokenhearted And saves those who are crushed in spirit" 

Job 5:18
For he wounds, but he also binds up; he injures, but his hands also heal.

What comes next?

   We fully expected to go back into the Perinatologist's  office and have her tell us our daughter's heart looked great, we were free to go enjoy the rest of the pregnancy. Four weeks before, she had told us to come back just as precaution because Karis' right atrium looked more prominent than her left. She said she was probably being overly cautious and since Karis wouldn't move it was probably just her position. We would get more images next month and then be good to go. So that July morning we were expecting easy. We would get to see Karis on the screen and confirm her cuteness and go on about our day and our "normal" pregnancy.

   Of course life and circumstances never turn out exactly how you have envisioned them in your mind do they? So when the doctor was taking what felt like an extra long time to get the images of Karis' heart, I knew we weren't about to be released from her care. I had been here before, the dark room, looking up at the screen as my husband sat to the side and the doctor moved the wand around on my belly over and over again. I knew long meant things weren't as they should be and the doctor was being extra careful to try and get the images she needed. I sat for awhile and then I asked; so her right atrium still looks enlarged doesn't it? Sweet Dr. Bleich sighed and said, yes it does. She brought up images on the screen and explained what she was looking for. She told us she suspected Coarctation of the Aorta.  Amos shifted in his seat and I started blurting out a thousand questions. Dr. Bleich was sweet and patient, answering my questions and telling me what to expect next. She reassured us that this diagnosis, if indeed it is confirmed, is not as severe as Hypoplastic Left Heart Syndrome. She also reminded us we need to remember this baby, sweet Karis, is not our Koralyn and we would not be experiencing the same thing with her. She told us her office would schedule with the pediatric cardiologist and let us know of our appointment time. She hugged me sweetly and let us go.

  The tears didn't come until Amos and I sat down in the all too familiar hospital cafeteria for lunch. I was feeling a range of emotions but was too proud to cry while in line for my pasta dish. I stood waiting for my turn, feeling like the room was spinning, like we had been here before and it was not somewhere we ever wanted to be again. I felt physically numb and detached from the noise and people around me. I felt as if I was floating above the scene, like this couldn't actually be my life, I was just watching it play out.  Emotionally distraught. Confusion, anger, fear, all swirling in my head at once as I tried to stand still and not pass out with the weight of it all. How could we be here again, in this awful space where they tell you something might be wrong with your precious baby growing in your womb. The baby you have prayed for long before even becoming pregnant. How could we be expected to calmly make our way to the elevator and then  down the hall for a bite to eat before we headed back to reality. It all felt surreal. I remember after getting Koralyn's initial diagnosis Amos and I left the hospital in Mansfield and did the only thing we could do I suppose. We went about our day as if we hadn't just been run over by a Mack truck. We mindlessly drove to get a burger, ordered and sat down and just like now, the tears came with our food. Everything felt numb and surreal. Like we were moving more slowly then the world around us. Our plans had suddenly been derailed and yet the world just kept moving like nothing was different, like we didn't just receive a gut punch that knocked us into oblivion. Now here we were 3 years later doing it all over again. I wanted to stand up in that room full of people and yell loud how unfair this all was! Not again, not more hard, not one more thing to try and survive. How could this be happening.

  Immediately the anger came. I sat and wondered out loud to my husband why us. All we wanted and hoped and prayed for was a daughter. A healthy, whole, daughter to love and bring home and raise. People had babies all the time, perfect healthy babies, boys and girls. People had big families all the time, five or six kids and all were healthy. So why was it too much to ask for us to get one more chance at having a daughter? We do our best, we are raising our boys the best we know how and loving them as much as any parent could love their kids. I try to be so careful during all my pregnancies, going so far as to cut out caffeine and lunch meat and all the things the experts tell you to avoid. Trying to rest and be gentle with my body so my baby can have the best chance at developing well. I sat and wondered how some moms drink and smoke and abuse themselves while pregnant and their babies come out whole and healthy. I sat and thought of all the babies that were normal and healthy and the mom chose to abort them for whatever reason. I thought about all the babies who are born and then are abused and neglected and unloved. Discarded, as if they don't matter. I sat and thought on all these things and stewed in my anger and confusion. Did I do something to deserve this? Did I eat something or expose myself to something to cause this again? Am I paying for past sins? Should we not have been greedy in wanting just one more child when we have three healthy boys to love and raise? Am I not good enough? Oh the questions that flood your mind when bad things happen. Like a confused child, I want a reason and an answer and I want it now! It better make sense and calm all these crazy emotions running through my veins. Inside I stomp my feet and lay down on the floor in a heap demanding an explanation like a toddler.

  My anger never lasts long. Always my next instinct is to run into the arms of God. Like that same tantrum throwing toddler. Now suddenly embarrassed at my outburst,  red faced and running for reassurance that He still loves me. He does of course. He knows I am human and weak. Confused and prideful in my indignation. I wasn't always comfortable in that. I grew up thinking you were never allowed to question God. Never allowed to feel negative or confused towards Him. I am so glad I have come to know Him better. Know Him as my Father, who knows my weaknesses and loves me anyway. How silly it was of me to think that as long as I didn't ever say it out loud or do my best to stifle those feelings I would be okay. He knows me better then I know myself. I believe He knew exactly how I would feel and react to this news about Karis. He isn't waiting for me to fail so He can strike me down and declare me useless.  He is waiting for me to surrender and come to Him in my failures knowing He will carry me, ESPECIALLY in my weakness. He is my Father after all. Like any good Father He wants what is best for me and I believe He knows better then I do exactly what that looks like.

  I need to remember in my moments of fear and doubt that there is a bigger picture here then what I can see. I am trying, but I am human too. I was reading an article yesterday about a young couple who had lost both of their sons in a horrible car accident. Tiny, precious boys with their lives stretched before them, taken in an instant. They told the reporter that they don't want this tragedy to be wasted or in vain. They believe God has a bigger purpose in this awful situation. They believe that they remain here without their sons for His reasons and they don't want to waste their pain by shutting down and becoming bitter. They want God to use this for His glory. I think this sums it up for any true believer who goes through tragedy. They come to a point where they realize they have a choice, to become bitter or to become better. Amos and I have tried since day one with Koralyn to become better. Don't get me wrong, I have my bitter days. I can throw one mean pity party for myself on occasion. Overall though, even in the midst of our pain we have tried hard to take our tragedy and allow God to use it. We pray He turns our ashes into beauty and our mourning into dancing. We want to be used and have purpose out of our pain, that has been our prayer since losing our sweet Koralyn, much like the beautiful couple in the article. Purpose in the pain, because either you let God give it purpose or you let the pain overtake your life. Better or bitter. We try each day to choose better, and the only reason we can do that is because of our hope in Christ.


  So it will be in this also. I will choose to believe that if Karis does indeed have a congenital heart defect like myself, and Koralyn, that God has a purpose for it. It isn't just cruel fate or bad luck as some would say. It is part of a divine plan. I know there are critics and non-believers who will scoff and say, how could you believe such a thing? That the same God who supposedly loves you has brought on a cruel and painful defect in your daughter's heart? Not once but twice now. To them I would say that I wrestle with these questions as much as anyone. My faith doesn't immediately give me all the answers I want. What it does give me is rest in knowing that I am just one humble being.  That I don't need all the answers. I rest in the sovereignty of God others seem to fight against. It gives me hope that I am not in charge and that what I think is the best plan for my life may not actually be the best plan. It gives me comfort as well, to think of God giving up his Son for me. The pain in that. Knowing that He knows exactly what this pain feels like is comforting to me. Since Koralyn died, I often think of Jesus on the cross in the moment when he cries out "My God, My God why have you forsaken me!" (Matthew 27:46) As hurting humans we often feel forsaken in our darkest moments. To think that Jesus actually took that on himself is so humbling and comforting to me. There is nothing that I can feel, not even in my worst moments that He hasn't already felt and experienced. Far worse indeed then anything I can experience.  He knows. He knows and my heart finds rest in that.

 Now one of my biggest struggles is feeling like I have to explain myself. Not to God of course, or those that love and support me, but to the critics. The people who wonder why Amos and I would choose to get pregnant again after Koralyn. Why after the birth of our precious healthy Abram would we keep going? How could we possibly be so foolish and greedy to want another?  How could we chance putting our children through more trauma again? Why couldn't we just be satisfied with what we have?  I know, I know, I shouldn't listen or care about any of the critics, yet it is human nature to want to defend yourself. To want to prove and justify yourself. I am not sure we are born knowing there are critics, I think we learn about the critics along the way. You learn that people are judging you. Looking at you and judging your choices, your words and actions. Then one day you wake up and you realize you care so much about those critics. You aren't sure why, but you want and need their approval it seems. It is impossible to get really, because no matter how many people are on your team and judge you approved there will always, always be a critic. You can choose to focus on your teammates or on the critics. Choosing the critics is never a good idea and only leads to defeat. Yet I am human, and tend to focus on the one negative, despite however many positives there are. I am that little girl still fighting for approval from the critics and a lot of the critics are just me, myself, and I.

  So here I am feeling like I need a good defense and explanation for all the critics. Feeling judged and defective myself. I sat in the specialist's office and immediately told her I felt stupid. Stupid for wanting just one more baby, stupid for trying again, when I have a heart defect and now have had one daughter die of her's. She gently reminded me that we sought advice from the experts, we didn't jump blindly into this. All those experts told us our odds were pretty good to have another healthy baby. About 95% good, according to all the data and the numbers. They also reminded us that we already beat the 5% odds of having a baby with a congenital heart defect three times with our boys. So we weighed the odds among other things, mainly our faith. We prayed and thought, talked and decided that we did indeed feel like we were not done growing our family and we wanted to try for just one more baby. So that is what we did. As Christians we believe that God is the Author and Giver of life and that if He did not plan for us to have another child we wouldn't. We believe, as it says in the Bible, that "children are a gift of the Lord." (Psalm 127:3) It does not say, only perfect, healthy, and whole children, it only says children. We have first hand experience that what the world tells us to discard as imperfect and a burden to our family, God calls precious and beautiful. He uses the weak and broken things for His glory and to bring us closer to Him. I know without a doubt that sweet Karis is a gift, just like Koralyn was a gift to our family.

  Next Tuesday, when we visit the pediatric cardiologist,  we have no idea what we will be told. We don't know if we will be given the all clear, or another CHD diagnosis. Of course we are praying and hoping for good news and release from the specialists. We know it can go either way at this point, and Karis being our fifth child, we know what both ways feel like. One is a mountain top moment, and one is a deep, deep valley. We rest in the fact that God has already met us in both places and we know He will be right there again, wherever it is we end up.