The Sound of His Mama's Heart

I guess I've more or less just "documented" everything throughout Hazaiah's life, which was what I wanted to do; I didn't want to forget one little bit of it... My emotions have been so jumbled up inside of me all along, but I never could sort them out enough to write what I was really feeling during it all. I couldn't say it, couldn't explain it, and honestly, at times, didn't even know what I was feeling... I would attempt to pray earnestly for the life of my baby, but usually no words would come. Jason would verbally pray for both the baby and I, and the other children and my mom, but I would lay there, listening and silently joining in while the tears effortlessly fell on the pillow. I would try to tell God all about my fears and hurts, but I didn't know how to say what I was afraid of, and I couldn't comprehend the depths of my pain. I believe I have learned, at least partly, the meaning of the verse:
We know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered...
 Most of my prayers were just tiny phrases asking for mercy, cries for help, and groans of "Oh God..."

But there were a few times I remember... During one afternoon I was sitting by Hazaiah's bed, holding his little hand and rubbing his head. It was quiet in the room, and the lights were low. Hazaiah was sleeping peacefully, his numbers on the monitors were all steady, and it had been awhile since any nurse had been in there.


"Please God", I prayed in a whisper, "Please let us bring him home, at least for a little while..."


Ye know not what ye ask...


What...? Why did I think of that scripture? I thought of the question the disciples had just asked Jesus. Perhaps they had good intentions, but they did not realize the magnitude of what their question meant. Did I not realize the magnitude of my own request? I pushed the thoughts away...


The next day I sat there again. This time I was crying silently as I sang to him. I wished so badly that I could hold him close to me to comfort him, and myself...

"Please God", I prayed through my tears, "Please let us bring him home, at least for a few days..."


Ye know not what ye ask...
Are ye able to drink of the cup...?


God, I am. I am. I am able... I know it will be hard; but others have done it, I can too. I can take care of a colostomy bag; I can feed him through a tube; I can suction out his ventilator...
But our all-knowing Father knew I couldn't... 
And as I looked at my little baby lying there, I believe I knew I couldn't too. I wouldn't admit it then, but I know I wondered, "If he desats and stops breathing just from getting his diaper changed, how will it be at home when I change him? How can I give him a bath and dress him?" 


And looking back now, I see how God was merciful to me. If we had been sent home, with or without a ventilator, and I had been at home when the breathing tube finally stopped helping him, I would have worked and worked with all my might to get him to breathe again. I wouldn't have been able to hold him in my arms during that time; And I would have lived with the agonizing questions of "What did I do wrong?" "Could I have done anything differently?" "Would this, or that, have helped him live longer?" 
Instead, we did get to hold him, though not as long as I wished (but would it have ever been long enough?); and we had the nurses there who carefully and quietly walked us through every step- retreating to the background during the times of intense grief or family closeness and then stepping forward with thoughtfulness just at the times when we weren't sure what to do next...


I thought I had prepared myself for Hazaiah's life, and death. During my pregnancy I had read so, so much on Trisomy 13: all the symptoms, the treatments.  I had read nearly a hundred different testimonies of other families with Trisomy 13 who went through the birth and death of their own baby. Literally, that many, a little at a time every few days. I knew every story had various experiences, but it was true: most of them died within the first month. The one thing that was consistent was that they were all different; but even so, I knew what the probable outcome would be- or so I thought. There were a few, a very few that lived beyond infancy, and I knew that I hoped so much that we would be among those few... 
But still, I was prepared. Or was I?


See, all of the preparations I made were all abstract preparations. All the stories were of other people's babies. I had never met them; and though I could still sympathize with their lives, I didn't know them. But now, this was my very own baby. I knew him. And I never prepared myself to love him so much... And then to let him go... 
Some people may think: Well, you have 5 other children. You should be thankful for them and give them all the love that you have... 
And before, I would've agreed. I am very thankful for the children I have, and I know that the thought of "giving them all the love that I have" is a good intention; but there is something incomprehensible about loving each additional child that God gives us. 


When I had my first baby, I loved her so much. I was so close to her, and seemed to understand her infant thoughts in ways that I never dreamed possible. So when I was expecting my second, I wondered how this would all work. Would I love her the same way? Would I love my first more? -or less? I dreaded the thought of either. How would I divide my heart to love them both equally and yet still be just as close to both of them as I was with one? I clearly remember having these thoughts at different times throughout my second pregnancy...
But it was after my second daughter was born that, with great delight, I discovered that I didn't need any division of heart! It was as if with the birth of this daughter, God had also birthed another entire new heart within me- full of love and attachment- just for her and all for her! I didn't worry anymore- each additional baby came with another full heart of love within me that was specific for that child...


I didn't see Hazaiah immediately after he was born- they took him away too quickly. I didn't hear him cry, for he wasn't even breathing. But as I heard the commotion and panic all around me, I began crying, and crying out, for his life and breath. I never did hear my baby cry. He couldn't cry with the ventilator in, and he just didn't cry during the few hours after they first tried to see how he'd do without the ventilator. Jason heard him cry though, that first night, within the first hour of his life... 
After that first hour, they finally wheeled me over to see him in the NICU. When I saw him there, I knew he owned his very own full heart of love within me. That love longed to pick him up and hold him close, to comfort him with nursing, to let him hear his mama's voice close to his ear- telling him how loved he is, what a good baby he is, and how I am so sorry I have to leave him there without me; to tell him not to fear all of these funny lights and noises, and all of these different people and voices he was not use to... But that same love had to choose to refrain, to leave him there without any explanation, without any holding, and with very little touching. I tried to get close to him, to talk to him, but I don't know if he heard- there were so many things in the way...


There is something special -almost magical- about being a mother... 
You know when a baby is hurt, or frightened; the baby cries and may get picked up and passed around to a few people, but nothing helps...


 Then mama comes, and as the baby is placed into her arms, suddenly there is peace. The mother doesn't get conceited in her privileged position, it's just the way things are. Everyone smiles because, well, it's the way things are supposed to be... 
I never got that with Hazaiah...
You see, I never heard him cry, but I saw him. During the first week of his life he would attempt to cry, but no sounds came out because the ventilator blocked his vocal cords. His face would scrunch up and his mouth would open and close while he wiggled around slowly... 
I tried so hard to comfort him... I would rub his leg or his arm or his head, I would talk to him to tell him I was there, but it didn't work the same. I began to wonder if he even realized I was his mama, and that I was there... 
It hurt so badly...


Then there are times when babies are in a strange environment surrounded by unfamiliar sights and sounds; They look around with fear in their eyes and a small whimper in their voice until at last, they see their Dad and Mama. Suddenly filled with relief, the dam breaks and their small whimper bursts into dramatic sobs as they "let it all out" and cry even harder on their parent's shoulder...
Sometimes it seemed like this is what happened during those first few days. Hazaiah would be laying there, sometimes with his mask covering his eyes, and sometimes without. We would come and speak gently to him, telling him we were here now as we softly placed our hands on him. He seemed to get so emotional, like he was "letting it all out" now that we were there. He would look up at us as he held one of our fingers, and if I didn't know better, I would guess that he really understood that he wasn't with us like he should be, and that he missed being with Mama all the time, and hearing Dad tell him "Good morning", and trying to kick Dad's ear as he talked to him through the uterus every evening...
Our baby's life was not the way he was use to, nor was it the comfort of his Mama's arms and Dad's hands. It was so hard to see him like that: to know he was hurting. Perhaps he was confused and scared; Did he think I had forsaken him...? The questions and fears pounded my heart...


Determined that he would know me, and that, as best as I could, I would let him know I was there, I came every day, and stayed as long as I could. I kept touching him and talking to him, trying to see what comforted him the best. The nurses gave me their chair, and left the pump in the room for me to always have. I learned that he really enjoyed having his head rubbed, and I could hold his legs and stroke them firmly, but the light caressing seemed to unsettle him a little. I had hoped that my touches would be magical, like a mama's complete embrace can be, but he would still desat at times, and my touches couldn't always stop it- but sometimes they would, at least for a little while...
Whenever I would first get there, and put my hand into Hazaiah's little bed, I would slip my finger into his little hand and he would grasp it so tightly. He always held my fingers so tight... We would sit for hours like that, and I would sing to him. Sometimes he would start wiggling and seem restless, but just holding my finger could calm him down. There were a few times- how precious they were- that he would pull my finger up to his mouth...
I watched him make sucking motions on his breathing tube, and that, too, nearly broke my heart... He needed his mama's comfort of sucking that I could offer him- yet I couldn't offer it to him. I couldn't comfort him in that way... 
I would sing to him so that he could constantly hear my voice. Most often he would sleep, but sometimes he would open his eyes and just calmly watch me. I think I always got a burst of adrenaline whenever he woke up... Once, when one of the counselors was there, I was talking to her and noticed the baby stir a little. His eyes opened and he looked around. I was sitting in my usual place, right beside him. 
"Look," she said, "He hears your voice and woke up."
It seemed to be true. I had been singing to him softly before she came, but right before he woke up I had raised my voice a little to speak to her in a normal conversation tone, and then his eyes opened. This brought so much joy to my heart...
When I would leave, I would always make sure he was comfortably sleeping, and that all his numbers were good. Then there were days he started waking up right when I had him all tucked in good and was ready to leave. Of course I wouldn't leave him like that- so I would talk to him longer and be sure he fell completely asleep again... Those times were so precious to me...


But it was so hard to only have those several hours each day. I kept telling myself that it would be OK; that we would bring him home soon and he would never remember those times of fear, loneliness, and pain. His last days would be spent at home with his family where there would never be any lack of arms to hold him and people to talk to him. I imagined that all of our love for him could keep him alive longer and longer, but it wasn't to be...
Back at the Ronald McDonald house I would look at his pictures while I pumped, and my heart would ache as I thought of him there in the hospital. As things worsened, often I would just slump down with the weight of it all, and the tears, and the questions would flow... I can't even hold him- does he think I've left him? Does he think I don't care...? Does he know I'm right here, hurting with him through his entire life...? Oh, my baby... I wish I could hold him, relieve his pain, and take it all away...


And then that final day arrived... I finally got to hold him, and there was no fear of any numbers on the monitors, because the ventilator wasn't working anymore anyway... My heart full of love for my baby tried as hard as it could to pour itself completely out on him during those few minutes left of his consciousness. I tried so hard to explain it all to him- to tell him I just wanted to bring him home, that I loved him so much, and that is why his life had to be this way. I never wanted to let him go, and so I had to try... And I tried so hard... But then I told him he would be Ok soon; as my tears fell on his face, I told my sweet baby he would be Ok soon...
And he is Ok now, I know he is... But I wish I knew what he was doing... Every time I left him, as hard as it was, I always knew what he was doing. I knew who his nurse was, and if there was a problem, I knew they would call. If I ever just got curious, I could always call there and ask how he was, and they would give me all the details. 


But now- what is it like? Is he still a baby? If he is not full grown, I don't see why he would suddenly jump to being a toddler or a child... It seems he would either be in his "prime" (whatever that is) or he would be just as he was- 19 days old upon entering Heaven... If so, then who is taking care of him? There were 2 other babies that died right at the same time as Hazaiah- and those were just the ones I know of, so I can only imagine how many other babies are there right now; surely the "lap of Jesus" would be full. Would Jesus have time to singularly take care of each little one...? 


These may seem like strange, even misguided questions; but I don't want to just make up my own fanciful idea about what the babies do in Heaven. The Bible is very quiet about the babies that die, and I want to know the truth...


One day... One day I will know... Until then, I have to trust that it's good. And perhaps, slowly, the pain of not being able to bring comfort and peace to my baby while he was here, not being able to have him respond to me with the need that all babies do, not being able to hold him when he cried, not knowing if he even knew I was there... slowly, that pain will lesson. 


God, please tell him that I love him. Please tell him that I was here for him, that I did all that I knew how to do, and that I just wanted to bring him home... Please, God, teach him about his mama's heart...
And God, I know that You must understand... You also watched your son suffer and die... Your son, in His humanness, may have thought you left Him, for He cried out, "My God, My God, why have you forsaken me?" We even have doctrines about the Father turning His face away in that moment... But is it possible that you didn't turn away? That it was only how your son "felt" at that moment? Was your Father heart aching with grief at that time as you heard Him? Did you long to hold Him? -To relieve Him of all of His suffering and take away all of His pain and just bring Him home...? For in Isaiah 53:11 we have a different perspective of Jesus's time on the cross- Your perspective. It tells us:
 "He shall see of the travail of his soul..."