The longest hours

Josh holding his bravery beads after his stroke at three months

The day of Josh's first surgery was July 21st 2008, he was six months old, having had two failed catheter attempts and failures the open heart was our only option, we met with the surgeon, talked to the anesthesiologist, cuddled him, held his hand while he had IVs inserted, and then we walked the final steps with him to the OR staging area. I refused to cry, how I wanted to cry! My lungs hurt, my eyes burned and I swear the tears were literally on the cusp of overflowing but I couldn’t give in to them. I wanted him to see me smiling at him, I didn’t want him to know a moments fear. I wanted him to know it would be okay.  The nurse came and took him out of my arms, she took him out the doors to the OR, and my arms felt as empty as the day they took him from me 6 months before. I turned to Tim and let the tears come in waves. It was done, there was nothing we could do, and control was out of our hands.  God would be his only source of comfort now, and he and the doctors were all I had to hope in. We found seats with our families in the waiting room and began the intolerable wait.

Briefly after the surgery started we looked up to see the surgeon standing before us, beckoning us to a private room. My stomach dropped and I felt myself beginning to panic. This couldn’t be it? That couldn’t have been the last time I held my baby right? The range of feelings and thoughts that run through your mind in a moment like that are something not easily looked back upon. I still get chocked up when I relive that moment for you.  In reality, the doctor only wanted to let us know that he would not be attempting the hernia repair. All that panic, fear and heart wrenching ache and all he wanted to tell us was that he couldn’t repair the hernia( a surgery that he needed and we had all hoped could be done under one general anesthetic to spare him more in the end) at the same time. The relief flooding into my heart was so real, so full, that it actually got me through the next few hours with out too many other feelings. We sat and read, we ate, drank lots of coffee and eventually the doctor came out a second time about 5 hours later. The surgery was successful, they had cut the hole where the pulmonary valve should be and would leave it open, this of course wasn’t a permanent solution but by the time he needed to have the valve replaced he figured he would be a late teen or even early twenties and with the rate of science and research who knew if it would even need an open heart. The hole, between the chambers could not be closed (he was just too little) but they cut the flap so that it would help to minimize the fluctuation in his saturation levels, creating a more even flow.  We were told to go have dinner while he was moved to the CCU to recover.

The next few days we found ourselves once again thrown onto a roller coaster, but this one seemed to have no end, and certainly no one driving. Josh’s saturation levels got worse, he was heavily sedated and to the naked unknowing eye he looked dead. We were told that things would always get worse before they got better; we had tried to prepare for that inevitably but nothing prepares you for it. No one can tell you what to expect, and no one can tell you what you will feel. Even those who have traveled the road before you, with children of their own, it is always a separate journey, always different, always painfully lonely. To walk into the CCU and see your baby for the first time after having open heart surgery, to see his scar, the intubation’s tubes, the direct lines, the pacemaker wires, all of it; is one of the scariest, most frightening things to ever see and no one can ever explain, no picture can ever prepare you.

On the Wednesday night things were bad, Tim had to run our small group so I went and found myself once again seated in the empty chapel on the first floor of Sick Kids. I yearned for comfort, I so longed for God’s touch, his words, his promises, anything he was willing to give me. I prayed, I cried and I pleaded, but nothing came, no words. I was met by silence. I prayed more, and I cried. Then at the back of the chapel I heard the door open, I was scared to look up, convinced it would be God Himself come to talk straight with me. The footsteps went the other direction; the person who entered sat in the pews to the side of me and said not a word. My heart hurt, I had so longed for his comfort and I felt more alone than ever before.  It was then, in that moment that the person stood, came to me and gently touched my shoulder and sighed ‘oh my’ as if feeling every ounce of my pain, joining me in it and knowing that words couldn’t help but that a soft touch and a whispered heart felt sigh might bring some small measure of comfort. I never saw the face of that person, I don’t know if it was a man or a woman, but I can still close my eyes and feel that touch, hear that sigh, all the way to my core because in my heart of hearts I know without doubt that that person was sent by God in my hour of need to offer nothing but comfort.  I went to bed that night and began to talk privately, intimately with God again, sharing with him all my fears, my doubts and my odd theology around suffering. I wrote the prayer down because I was simply too tired to think clearly and I wanted to be clear, I wanted to know that God would not only hear me but also fully understand me.

“Father,

I feel like I have lost the ability to pray, I have no comfort from you. This just seems to get harder and harder. Since the moment we had that first Fetal ECHO I have been praying for a miracle of healing for Josh and you don’t seem to want to give it to us. Instead of healing him he just seems to get worse, culminating in this surgery and now these new complications. I am so confused Lord, and so tired. He’s such a sweet baby Lord, please, please, please heal him. Lord, I am praying boldly, turn this around for him, for us. You are the only one who can heal him now; I am begging you to do that for us. I trust you, that you have a plan for Josh and Tim and I know that there is, hidden somewhere in here, a purpose, even if we don’t see it now. Father, if I am honest I have to say I don’t understand. I find my faith lagging, and I am scared that it’s my faulty faith that is the reason Josh hasn’t had his miracle yet.  Please, show me, talk to me, don’t be silent in this, I need you more now than I have ever needed you before. I need so badly to feel like we aren’t alone in this, that you are sitting in the CCU waiting room with me, that you are near his side, offering the comfort that I can’t.

I am so tired Lord, and I can’t concentrate on you, I can’t pray without falling asleep, I can’t hear you father. I need you to YELL, scream, and do whatever you need to do in order to get my attention. Please Lord, tell me something, talk to me, and heal my son Lord, Help Joshua.

You have always answered me when I have prayed. You have never let me down, please answer me now! Don’t leave me hear alone in this place, tonight Lord, now. Sit with me, hold me, comfort me, this place is dark and scary and I don’t want to be alone. Answer me Lord, hear my prayer and have mercy on me!

There are so many concerns with Josh Lord, heal his bone, ease the pain that it causes him, fix his valves, close the ASD, Lord I beg you to lift his SATS so that a new surgery isn’t needed. You are my only hope, the doctors are about to give up on him, please God, please, step in now and do something. I own your promise that nothing is impossible for you, this is not impossible, you can fix this. Please Lord, please fix it.

I am sorry Lord, I am sorry for the anger I am feeling, for the hopelessness and the lack of faith. I am sorry for the doubts and for the selfishness. Most of all Lord I am sorry for trying to go through this without turning to you sooner. Forgive me for the ways I have failed you, I am so sorry.

Help me to believe, give me faith Lord where mine has failed me, and Lord I pray that you grant us peace, regardless of the outcome I know we will need your peace. Help me to be the mother I need to be, the mother you created me to be, the mother that you entrusted with the care of Joshua. If you take him Lord, if this was only a temporary stop for Josh, then I ask you to help me strong enough, to find the strength of character, the gift of hope and peace, and help me to find a way to continue, and Lord, help Tim and I find a way to move through it together. Father, in all the chaos help us to see your face and feel your arms. I miss you voice, I miss your strength and comfort. I miss your guiding hand.

On Thursday morning, despite not being off the O2 yet and not doing very well they moved him from the CCU to the step-down unit on 4D. Tim and I were thrilled, this is  a graduation of sorts and it means things are looking good( the job in 4D is to get your ready for home. We both took a giant sigh of relief and the nurses and Tim convinced me that I should go home, shower and get some rest.  We slept well that night, my heart lighter for the burdens I had left at the cross the night before, and the knowledge that God was indeed looking after our son. I suppose that is what made Friday morning that much harder, that much more painful. We arrived at the hospital with smiles on our faces and rested and ready to face the new day. We walked into the step down unit and heard a symphony of alarm bells and whistles. Nurses and Doctors surrounded Josh’s bed and when I saw the monitor his saturation levels were so low that I made a joke about it, saying ‘is the machine broken’.  Our cardiologist, Dr. R, who under normal circumstances is very light hearted and fun turned to me with worry in her eyes and said ‘I am afraid not’.  I stood there helpless while they worked on Josh, Tim and I holding hands so tightly that I can’t imagine we had any feeling left in our fingers. Questions flooded my mind but I was too scared to distract anyone so I couldn’t ask. What had happened? I had been home sleeping, resting, light and easy while my son lay here struggling to live? What does that make me? God, where are you? You are supposed to be here. Why aren’t you helping him? White hot rage filled me as I watched my son turn a bluish grey colour unnatural in life. His core was all that still had shades of pink.  They stabilized him and Dr. R had the nurses put Josh into my arms to keep him calm. I held him, fear coursing through every vein that this might be it. This may be my last chance, tears filled my eyes and fight them though I tried they still fell. Never had I realized how much love I had for this little man than in that one singular moment. I didn’t think I would be able to let him go.

Dr. R bent down beside me, she explained that during the first surgery the doctor had cut off a flap that was on the hole between the chambers, that he had hoped it would even out the pressure and blood flow. It instead caused the hole to become too large, and therefore his blood was not getting nearly enough oxygen; in her eyes too I saw tears as she said ‘I’m sorry, we need to go back to OR. It’s a risky surgery but I don’t know what else to do for him.’ In my heart I knew what she was saying. That he wouldn’t survive a second surgery in his weakened condition, but they had no other options. Her tears, her apology were not for the surgery but for our loss.  She then left us, in order to get the team of Doctors from CCU and begin prepping him for an emergency surgery. They asked us to leave the room and we began to make the calls to our families. I spoke to my Mom, and in her voice I knew that regardless of me not saying it, that she knew this was it. There was no way he’d make it this time. It was over, she and my Dad got in the car to make the journey to comfort their daughter over the death of her son. It was not about Josh anymore, his fate was sealed.

The doctors came and retrieved him, bringing him to the CCU in order to prep him. One of the doctors came out to talk with us and said that he had to sedate him to get the tubes in because he was fighting so hard. This child, who everyone was about to write off, was fighting so hard that he had actually pulled out his direct line. It gave me the courage and the hope to pray harder, to once again boldly ask for that miracle I had lost hope in yet again. This was an impossible situation was it not? Could I not ask for him to do the impossible? We were told that they would be taking him to the OR as soon as they could, but hours passed and we had heard nothing. Finally at Four o’clock pm that afternoon the CCU doctor came to us in the waiting room. His words gave hope.

“We don’t want to take him into surgery, we have been in meetings discussing his case and we have agreed that we want to keep him sedated over the weekend and on life support to keep his saturation levels stable, and we want to think it over, make sure it’s our only option.”  I felt hope, that maybe this wasn’t the end; maybe we would see his smile again. Maybe in this delay, in this time to seek more options God would do the impossible.

That weekend was the longest weekend of my life. We sat on a precipice and one move in the wrong direction, one swift wind and we would fall over. I sat hour after hour by Josh’s crib, staring down at his lifeless body, blue but for his torso. Holding onto his cold blue fingers and I didn’t stop praying. I didn’t stop fighting on his behalf. We nearly lost him a few times that weekend, at one point due to his medication.

Tim and I found ourselves again the Sick Kids chapel, the Saturday night of that dreaded weekend. We talked, cried and held onto each other, Tim looked up to a piece of art on the wall, of a master with his sheep, and he said.

 “Josh isn’t ours to hold, he’s been given to us on loan, to tend and care for, to raise, but he is not ours. We have no ownership of him. We need to give him back to God, we need to let go”.

Oh how those words struck me to the core, how they hurt and yet I knew he was right, Josh was my son but he is not MINE. He was indeed on loan to us. This gift was simply that, a gift, for whatever time we had with him. If we tried to hold on to him, we would ultimately smother him and ourselves. We had to let go and trust God to do his mighty work. We sat and held hands that night and prayed for our son, and then we let go together of the control we so desperately wanted to hang onto. We dedicated our son that night, to God's keeping. We gave him back in the only way we knew how and we prayed for the strength to survive the outcome of that decision.

Monday morning loomed before us, my hopes and prayers and desires for a miracle all came down to this day. To the meeting that the doctors were going to have that day, nothing before or since has mattered more than that one meeting. I think that God was inundated with prayers that weekend, from literally all over the world, all for the sake of our son.

I mentioned once that we named Josh at the 19 week ultrasound, when we discovered we were having a boy,  and looking back we both feel that God named him. Joshua, means GOD SAVES. That morning, through a consensus of doctors and experts it was decided to attempt a test procedure in the Cath. Lab, with a new device (an occluder) they would implant in the hole and allow tissue to grow over, hopefully closing the hole completely.  It was a test, when they got in there they could have trouble and discover a need for surgery, but it was the only hope that Joshua had. We signed consent and began to pray earnestly for God’s miracle.

Just one hour later the doctor doing the procedure came to see us, the test had gone well. The hole for the moment was closed and his saturation levels were holding steady. He smiled and told us we could go in and see him if we liked. What we saw that day was what can only be described as a miracle of a magnitude I won’t soon forget. For the first time in his life Joshua had pink skin, his cheeks were red and healthy looking, his arms and legs which had spent the weekend cold and blue and lifeless were now limbs with rich red blood flowing through them.  Our son, given to God, had been returned to us.  We rejoiced that day and every day that we have with him we rejoice and do our best to give the glory back to God.

What does this have to do with CHD awareness? The device that was implanted in Joshua's heart, which remains there today, is a new gift from the research being done on CHD. Five years ago this device would not have been an option for us. Five years ago, (at the time of surgery) would have been the day we lost our son. July 25th 2008. With awareness, comes funds, with funds, comes research, with research comes hope and with hope, with hope you can do anything!