I think about what I would be doing today, taking her to get her 6 month photos taken. That is if she were doing well enough to make a trip like that. What would she look like, who would she be, what would she be doing today. Rolling over, babbling, playing with rattles and sweet little baby toys? How proud I would be to have her on my arm, how much fun I would have dressing her in pretty pink clothes!
Yet she is not here, and it sucks and it hurts and there is a hole. Yet I am surviving, we as a family, we are surviving. Our pain is deeper then ever before and we find that our joy is deeper too. I feel like I have walked through and experienced so much hell in the past year and I have survived, we are still surviving. Thats amazing to me, I am so thankful that not only am I surviving but I can still experience joy and peace in the midst of this great turmoil. I feel like I know a secret some people never get to know in their lifetime. My faith has allowed me to keep breathing and even have hope that its all going to be okay. Even though I have lost 3 generations of my family in a six month period I still have hope, I am still walking and breathing and living, some days barely, and somedays my Joy overflows. I look at my boys and my husband and all that I have, and my hope to one day see my grandma and my mom and Koralyn again; and I think how can I be burdened and despondent for too long? No, I know these women and sweet Koralyn want me to get up and keep living while there is life left to be had! I feel even more so then before that God has me here for a purpose and that I need to keep trying even on the really hard days when I don't want to. I refuse to just curl up and succumb to my grief!
I think back to the Monday morning of Koralyns last and fatal crisis. I was in the shower in the PICU thinking about how wonderful everything was going, how maybe now it would be an easier road for Koralyn and maybe, just maybe we would be out of the PICU by Friday and home within a week or two! I was happy, really happy for the first time probably since Koralyn was born. Then I walked back into our corner and Koralyn's monitors were beeping and showing poor numbers and the nurses seemed concerned. I sat my stuff down from my shower and went to the end of her bed and sat out of the way in one of the tall rolling chairs. There I would sit for the next 3 hours. There I would watch two nurses and one doctor, then four nurses and two doctors, then three docs and countless others try to figure out why Koralyns sats were dropping so low. I would sit calmly and quietly with nurses ever so slightly looking my way every once in awhile to see if I was surviving and not going to pass out or freak out. I would text my sweet husband and tell him there was yet another crisis, when we thought we were past them finally. Then I would sit as my girl completely stopped breathing and her monitors beeped and raged and I calmly text Amos to come now she is not breathing at all. During this three hour period I got up every once in awhile when I saw an opening and I would touch Koralyn and kiss her hand and tell her to hold on that we loved her that we were all praying for her. I sat in that tall black chair and silently begged God to save her, breath life into her, make her thrive and grow and live! Over and over I just simply asked him to help, help us Lord, help her, help me, help these doctors. HELP. At one point on Monday night I got down on my knees in the PICU bathroom and asked God that if it was his will, please work a miracle and let her live.
When Amos walked in and they had Koralyn somewhat stable one of the doctors came over and said here is Kenda she has been sitting here watching all the turmoil unfold, battling with us. They still didn't know what was wrong, they had tried to wake her with a concotion of drugs thinking maybe the problem was just that she was too sedated. They had moved and tilted her thinking her airway was closed or maybe a lung had collapsed, they suctioned her mouth and nose over and over in hopes that maybe she was just clogged up like all kids get sometimes. Nothing was working. They called in respiratory and sono and anyone who would be able to help.
Eventually we had to leave while they worked on her and doctor came out into the waiting room and told us maybe she did just have a little cold and this was all a silly mess and by tomorrow her sats and everything would be back up and we could say we survived another crisis. Our first of many dashed hopes to come...
The next morning things weren't improving so our girl needed to be taken back to the cath lab to see what exactly was going on. Bad news came then, Koralyn had two clots one massive clot in her little heart that shouldn't even be there considering that part of the heart hadn't been worked on. It was going to take a miracle for these clots to break apart and dissolve but hey we had an army of people praying for her and some of the best doctors around fighting for her, we had hope we could walk away from all of this with our girl talking for years to come about what a miracle she was! It was not to be.
Things progressed and nothing that was tried worked. Her surgeon was held up in his 2nd 12 hour procedure on the same little girl who was taken out of surgery and then had to be rushed back in. Our job now was to wait, more waiting, the thing we had been doing since December 2011 when Koralyn was first diagnosed before she was ever born. At one point the blood specialist came in and said the meds they were giving her to try and break up the clots usually worked very well on adults. Of course the clots were much smaller then Koralyns. I said to him; so basically your saying its usually used to swim across a pool and we are hoping it will take us across an ocean. He sadly said yes thats about right. I just remember thinking if Koralyn lives, this will be one hell of a story to tell, one hell of a miracle!
Our friends were there now, Stacie and Meredith and of course Pastor Daniel on his birthday no less. I remember standing on one side of her bed and looking down to her catheter ba and knowing it wasn't a good sign that she wasn't eliminating any waste, I knew the toxins were building in her bloodstream. I looked at the sweet nurse and asked if in fact this was a bad sign, with tears in her eyes she said yes. I then asked how long before we knew there would be no hope for Koralyns survival, she said that wasn't for her to say, it depended on a lot of things. It was a that moment that a song a hymn to be exact popped into my head. I am not sure why, I hadn't heard the song in quite sometime, it was never one of my favorites. Looking down at my dying baby the lines kept playing in my head and comforting my wounded mama heart.
Because He lives, I can face tomorrow, Because He lives, all fear is gone
Because I know He holds the future, and life is worth the living just because He lives.
I think I knew, I feel like I knew the whole time since her initial diagnosis in the womb that God was giving us Koralyn for only a short sweet time in our lives. I can see now he was preparing me. To me this song suddenly coming into my head and my heart was God telling me even though he was taking Koralyn, I could indeed go on and face another day. To me this simple song replaying in my mind over and over for the next several hours was a gift from God. The Holy Spirit working in my life, helping me to survive these horrific moments of literally watching my baby die.
I see so many gifts in the midst of the hell that is losing a child in a tragic way. Our pastor who held vigil with us in that tiny room waking in the wee hours of the morning to every footstep that passed that door. waiting to hear if the surgeons attempts to remove the clots were working. Sitting and bearing with us the news that there was no more they could do for our sweet baby. My girlfriends who literally held me up and walked me out of that now sacred place. Keri and Stacie and all those precious women who took just a chunk of my pain and weeped with me. I could see the agony on thier faces and will never forget what that meant to me in those first awful moments of grief. My sister and my aunt who hopped on the first flight and helped me get out of my blood stained shirt to take a shower. My Aunt Ann knowing full well the pain of burying not only a baby but a cancer stricken husband. The women who cleaned and filled my home with food. Such precious souls I will be forever greatful to.
At Koralyns memorial, I requested two hymns to be sung for her; It is Well and of course, Because He Lives. Jeff did a wonderful job singing those most precious songs for us. Sitting here without my six month old baby girl I can say with honesty and hope, and of course pain too; that it is indeed well with my soul, because He lives.
In no way am I saying I understand it all. I have angry days and sad days and days when I ask God why he didn't answer my prayer the way I wanted him to. Why he couldn't have healed Koralyn and glorified himself through her life instead of her death. This is when faith comes in and you say, okay God, even though you didn't give me, and everyone else what we were praying for, we will still trust you, we will still hope in you. We know you have a plan and it is for our good in the end.
"Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Savior. The sovereign Lord is my strength; He makes my feet like the feet of a deer, he enables me to go on the heights." Habakkuk 3:17-19
