Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths. Proverbs 3:5-6
And our journey begins…..One of an unknown path, One of which WE chose not to ignore or terminate on our own, One of which we allowed GOD to show us what he had planned & One of which WE show no regret now nor ever. This journey was to be easier said than done. Something that I would like to say before I begin….each and everyone one of us, each and every one of our lives are different. We have all had our own journey, our own trails and own circumstances in our lives. These are things that can and will make the way we cope, live, and deal with our grief VERY different. Although one thing we all share is the fact that we all have HoPE in this journey, throughout this journey.
Our journey, it can’t be matched, compared, duplicated, understood nor lived by another. I truly believe this from the bottom of my heart, that each person is different. That we can listen, we can lend our hearts, we can pray for each other and we can support each other. I know now what it is like to lose a child, to lose my child. Not my only child, but one of my children. Therefore, now I can say that I know and I mean I know. But I can also honestly say that I do not and will not know what the next person feels like. I just KNOW, I can relate and can support them the best I can the best I know how. I don’t know the life that person has lived, nor the pain that they feel. The reason I feel this way, a way that I have NEVER felt before 12/30/2014….I have seen many babies/children in our HoPE family leave earth and begin their beautiful life in Heaven. Before Kaziah’s passing I did not know what this felt like. All I knew is that one day, in God’s timing, I too would face this. Although I did not understand, I knew it hurt but did not know how badly. I really wanted to be there to support these families in our group with my true heartfelt condolences and prayers. I have felt very close to many of the families in our group. I have not always been the best post or even one to offer the best support. But I tried and I have had many times where I needed someone to give me ideas, thoughts, and suggestions. Ones that I could not receive from anyone else. Because you all are our Family in HoPE, you all knew what was to be expected. And for Kaziah we lived this day by day. I did not want another diagnosis, I wanted to be in the know so I knew what could come. I did not want to have all of these things happen. I had HoPE for better things, but because I was able to watch the news feed or ask questions I was able to know what could happen next.
With that being said our journey began on the day I was informed of Kaziah’s diagnosis. To be exact November 24, 2010, Thanksgiving eve. Grieving…..well that began at that very moment on that very day. Being told that my child was incompatible with life, would never breathe, walk, talk, etc. That it was for me to decide that day when they would set me up for an induction. Immediately, my response, when GOD is ready to take her he will take her. So every day, every hour and every minute of my day…..learning how to pronounce Holoprosencephaly, doing research and educating myself on the things that could happen. In return preparing my family, my other two children and my church family of the worst case scenario. But ALWAYS prayed for the best. At 5 ½ months, my water ruptured. Went to the hospital, they were sure this was it. Put me in a room, gave me IV fluids, put me on bed rest. Two days later, went home….a miracle! We went through tests….was given the diagnosis of alobar HPE & monosomy 18p. Still we prayed. At 32 weeks 5 days Kaziah’s head was that of a 40 week full term baby at this point I decided it was time to deliver. I wanted this to be a safe delivery. Not putting my life in jeopardy as I had two other children. This made me feel selfish. But I went through with it 33 weeks went in for an induction, Kaziah was born at 33 weeks and 1 day February 23, 2011. Delivery went well, she came out crying, and Apgar scores were ok. She NEVER went to the NICU and came home with me February 25, 2011 on hospice. A MIRACLE!!
Many trials, bumps in the road, prayers and relying on our Faith in God and HoPE! Kaziah was diagnosed with many underlying conditions, one after another. Kaziah was a beautiful girl inside and out. I would not have traded her for the world and am very thankful GOD chose us to be her family. Every day was a challenge as we did not know what was next. We cared for her 24-7. I kept track of all of her medications, therapy, appointments, etc. This I know for myself was a challenge and I was willing to accept it at all costs. I would fight for her with the knowledge I gained throughout this experience. As I knew she was ready to battle this as well. We together would know what was needed and what was to be expected. Kaziah was not a rule follower nor was she a text book case. She was Kaziah and she had her own plan. One that was emotional for us all.
“You, Lord, keep my lamp burning; my God turns my darkness into light.” Psalm 18:28
Throughout the journey, the last year was the toughest. I would question the decisions I was making. I would pray about them and God would bring me peace. That very peace felt very different on December 30th 2014. I went home in the early hours to get a shower and sleep before returning to the hospital, later than usual. The day seemed to be moving slow, it was different, but it did not cross my mind once that it was different. The slow walk from the garage to the elevators…..leads up to the point where I reach the main doors of the PICU and I felt more peace the closer I go to her room the more peace I felt. The moment I reach her room I felt complete peace. This feeling is indescribable. I knew it that very moment that it was time, God was calling Kaziah home. I did not walk to her bedside I walked straight to the chair sat down and stared at the wall. Her nurse was there, in and out. Finally I looked at her and said “How were things this morning with her? Did I miss anything?” And without allowing an answer I said “She is not breathing on her own is she?” She replies after taking a deep breath slowly with a sigh “Oh mom, no she isn’t. I’m sorry!” I then take that same deep breath and sigh and I said “Please, can you get the doctor.” I thought many things at that moment. I knew what I was going to say. I listened as the doctor spoke and I told him my feelings as well. (This team at this very hospital has been our family) He said “We can give her a couple more days but we will support any decision that you make.” I then looked at him and said “She is already gone. We are ready to let her go home to be with our Lord and Savior.”
It would be then that we would inform our family and friends of our decision. And to let everyone come by and see her on this earth one last time.
Little did I know, little did I understand. That her last admission would be December 29, 2014, and we would not have to see her admitted or discharged again. It was a reflection that since August our hospital stays had become more frequent and longer. As time went on it was beginning to hit home for me that it was getting closer and closer to time for her to be called home. I would pray for God to show me the way, to make it okay. I needed to hear Him. There would be times that I would sit reflecting on the time we had together. Sometimes beating myself up thinking about what could be and what could have been. But would quickly have to remind myself that it has been in God’s hands this entire time, which he is in control.
It’s all new feeling like a child learning a new walk in life. Telling myself many times that I am prepared to let her go when HE is ready for her. But in fact, I was not. Nothing I read or heard could prepare me for this moment.
The moment we took her off of the ventilator I could not contain myself, holding her for moments that felt like forever. Giving her to her dad as she took her final breaths. Her heart beat longer after her last breath than I would have ever imagined. We cried. We were all hurting. Cleaning her for the last time. Getting her dressed for the last time. Fixing her beautiful hair for the last time……..and seeing her lay there for the last time. Walking away from her for the last time. I all seems like a blur.
“Her absence is like the sky, spread over everything.” C.S. Lewis
Following the death of Kaziah I would find myself wanting to do the things that I would normally do. Filling the void of her not being there was strong, I needed to take care of her. I began to shut down quickly. I was sheltering myself and my feelings. I had in my mind that no one knew how I felt. Wanting to be alone and reflect on what was not there anymore. I was lost. Because when I lost Kaziah I lost my identity. She gave me reason every single day. I loved being her mommy. I miss those things…..But shutting down and sheltering myself was a huge mistake. One that I truly regret to this very day. Thus, the reason I began reaching out, explaining myself and preparing to take on this thing called grief.
“When you lose your child you losses are just beginning.”
Grieving is the most painful work that we have to do. If you do not grieve you stay frozen in pain, immobilized, your life stopped there where your loss left you. It is a loss like no other. It is disabling and wrenching hitting harder and lasting longer than you think. The most powerful human relationship is that of a parent and their child. And there are five factors that are very obvious to the reasoning of that relationship:
*Our Children invite our love and they return it richly
*They carry the HoPEs and aspirations that are most precious to us
*We create our child in our mind
*You child gives you a job and an identity
*From the day your child is born you commit to protecting them
Some of the things that we experienced in the stages of Grief are:
“If you do not grieve you will drown in your sorrow.”
And these are the ones that I felt the whole time, some still. Each day I pray for a better one and I may have a better one or I may not. Each bereavement has its own special set of sorrows and other strong emotions. The sorrow that comes suddenly and shockingly with an unexpected death. The long gradual sorrow of losing someone slowly to a terminal illness. The untimely death of your child is especially devastating. Loving someone makes you vulnerable to the sorrow that comes from losing that person. God does not want us to hold back loving people for that reason. God promises that our grief will be temporary, and our joy forever. HoPE is given in the bible of a fabulous future when we will be reunited with our loved ones. Allow yourself to grieve, it is okay, and I grieve still. To hear someone speak her name brings my heart complete joy. Speaking of her keeps her memory alive and the memories fresh in my mind. And she is spread over everything……..she crosses my mind all day no matter what I am doing. And I pray that never goes away.
I want to go further and explain how this also had such a HUGE impact on my other children in very different ways. But it all goes hand in hand…..don’t shut down but remember you will not always be able to help others grieving the loss when you are too.
Going to group counseling, art therapy or even out with a friend that understands you are a few of the things that I find helpful in our grieving process. Finding that one thing that helps you through the grieving process is so important. Do not shut down, come out and speak and let your child continue to live on through you. Things will never be the same, and a new normal WILL be found. I thank God for allowing me to speak with Jessica, Arisa’s mommy, she invited me to visit with them. I know that helped me open up a bit. I have a love for Arisa that I cannot explain. Again, another gift from God. And to be able to go and be at the service for Abby and finally meet Carly and Syd. This too opened my heart up to another HPE family that we have followed for a very long time. These two families, the ones we met there and many others have been my ROCK through this whole process. I have had close contact with many of the families in our group, you know who you are! I did not want to mention names without permission. I love my HoPE family!! And remember how hard your child fights/fought every single day! They would want the same from you!! Our FAITH got us through this process and continues to do so. And remember……
“We grieve with HoPE” 1 Thessalonians 4:13
Love, The Phillips Family
Darren, Laura, Isaiah, Jesalynn & our Angel Kaziah Gracie