Newkirk News: Walking on the edge

Maxwell's story continued... written some time ago.

Reflection is an interesting thing. There has been much on my heart. Much on my mind. I found myself in survival mode. Moving from one day to the next. Always waiting for answers, preparing myself for the worst and kinda going through the motions. David and I are quite different when it comes to dealing with stress and heartache in our life. He's a glass half full guy. I'm a glass half empty girl. More than half empty. There are only drops in the bottom of the barrel. It is all gone. It's going to be a disaster. There will never be any more water. Ever. So as we have walked this journey with Max, I have really struggled. I have felt as though I was walking on the edge. On the edge of sanity, the end of my rope, the edge of God's mercy.

Considering all that we have been through, it would be reasonable for me to have outrageous hope! Unshakeable faith, unexplained peace, the whole nine yards. Instead, this time around, I was shaky. I couldn't let myself believe that there was another miracle left in my life. God had saved my dad from death. He saved my husband from death. I had convinced myself that this had all happened to prepare me for my worst nightmare. Any parent knows what this is. For something to happen to one of my children. Something that I couldn't protect them from. Couldn't save them from. So as our long days went on with Max, I tried to be optimistic, I willed myself to look at the more desperate circumstances that surrounded me in the NICU, I had David tell me over and over again all the I knew to be true about our God. We learned it early on. Never doubt in the darkness, what you know to be true in the light. But I was struggling. I just kept telling David, "This has been my fear all along. All that we have been through was preparing us for this." We are on the edge. I am on the edge of the cliff of God's faithfulness. There is no way there is any left for me.

We eventually figured out why Max was born so severely anemic. We had what they call a maternal/fetal transfusion. For some reason (we will never know), some wires were crossed and Max was giving me his blood. I had a crazy high fetal cell count in my body after delivery. This most often occurs after some abruption, damage to the cord, etc. I had none of these. It will always be a mystery. So we knew what happened, but we didn't know why. I don't want to get too technical (mainly because I was doped up a lot of pain meds during all this and know that I still don't have all the details straight!), but there were a lot of unanswered medical questions about our little man. They went searching for the source of the bleed in his body. They didn't find anything that could explain what happened. They did find a minor brain bleed which they deem "clinically insignificant." It wasn't big enough to cause his blood loss and probably won't have any long term damage. Probably. I've done my research. We know what this could mean. He will most likely be fine...but we sit with the knowledge of it's existence in the mean time.

There were many possible scenarios presented to us as we sat with our Max in the NICU. Some better than others. All of them terrifying. Are we really talking about possible blood disorders? His inability to make red blood cells? Maybe they are the wrong shape? Maybe there is no signal being sent for him to make them? Is his bone marrow working? What!? We are watching his numbers every day. Waiting for them to turn around and start increasing. For him to show us that he can make red blood cells and they are in the right form. So we get sent home from the NICU with this little miracle. This little guy that has mostly foreign blood in his body. And we are supposed to wait and see what he does. We are to vigilantly watch for any sign that he is in distress. We get labs drawn frequently, we watch the numbers slowly decline. Every day we agonized over decisions. Do we take him to the ER? He is looking paler today. His breathing seems labored. He's not eating like he did yesterday. I lived in a cloud of fear and anxiety. Always second guessing myself, fearing that I was missing a sign. We had so much love and support around us. Nurses coming to our house to check him at all hours to ease my fears. His doctors consulting with me on the phone. But I was living on the edge. And I felt about 1 step away from falling right off.

So the weeks go on. Max's behavior seems ok, but the numbers keep dropping. We knew that this was a possibility. In fact we knew it would happen, it just seems that everyone expected it to turn around sooner. So we worked hard to ward off our greatest fears. That there is something bigger going on. There is a serious blood problem. Then our heart sinks. We get the referral for a pediatric hematologist. I'm familiar with this. My dad has cancer of the blood. You've got to be kidding me. See? I told you. There is no more mercy for me.

Insert me having heart surgery 5 days later. Having to be away from my Max, under anesthesia for 7 hours. The glass is empty.

I'm in the waiting room at Children's Hospital Los Angeles. In the Hematology/ Oncology department. Living my worst nightmare. Surrounded by parents and children who live with this reality day in and day out. I cannot even describe the emotion. I was overwhelmed. With fear, with anxiety, with guilt for my healthy children as I looked around.

I was convinced that I was on the edge. This was it for me. His goodness, his faithfulness, his mercy. It had run out.

In walks our doctor. He looks me square in the eyes. "Your baby is going to be absolutely fine". Excuse me, what? What did you just say? I was so dizzy. I thought I was going to pass out. He begins to talk me through everything. All the reasons we can tell that Max is making RBC, doesn't have any blood disorder or cancer. His bone marrow is functioning. He is confident that his numbers will turn around naturally. He will just probably take a while and drop lower that we're comfortable with because of where he started. He may need continued transfusions until he catches up. But he will catch up. Here I am again. Overwhelmed. Speechless. I cannot even describe the emotion. I just kept thinking, "His mercy hasn't run out. His mercy hasn't run out. He is faithful. "

If we had gotten different news in that doctors office, I know that God is still faithful. But here I am, once again, at the age of 29, thanking God that his glory was most demonstrated through the healing of my sweet baby. The same way I praised him after healing my dad and healing my husband. Am I still walking on the edge? Of course. I'm home with 3 boys under 4 years old! :) But I am daily reminded and humbled by God's goodness, his faithfulness and his PROMISE that his mercies are new every morning. They is no limit, no end. Great is His faithfulness.