It was about two years ago exactly that my husband and I were in a meeting with several doctors to discuss interventions for our twins, along with the risks intervention may carry and the quality of life they both may live.
I remember each specialty came in and gave us their speech. Each one sounding more and more gloomy. Each one speaking as if almost trying to convince us that it is just not worth it. That our son was already too far gone. That the risk to our perfectly healthy twin girl was too high. Why risk it?!
My husband was silent throughout this meeting, as he often is. He keeps his thoughts inside his head, and for good reason. When he gets upset, he speaks with such bass and assertiveness. Like a general leading his army. He does not yell, he does blame, he does not even get scary angry. He simply speaks. And when he speaks about these important topics, people listen. My husband is very wise and he is a natural born leader. SO if he is quiet, you can see the thoughts are running through his head. You can see that he is puzzling the words together in his head before he speaks them.
After each doctor came in, said what they had to say, then got up and left the room, I would look over at my husband and I was just speechless. After the third doctor I was done. The flood of emotions and negativity was so overwhelming. My husband and I were each in our own world. I remember I felt like I was in this little confessional box forced to listen to all these different scenarios. None of which were good or hopeful.
I just kept whispering to God… “Please let this be over. Please help me. Please tell them to stop. Please tell them there is hope. What do I do, Lord? What do I say so they can stop?! How do I tell them that we have hope in YOU?”
When the last doctor came in, he explained what Matthew’s Quality of Life would be if he were to survive. Without going into too much detail, it would be filled with doctors appointments, procedures, surgeries, infections, medications and a life full of doubts and disappointments. He could and probably would suffer from mental disabilities, as well as physical disabilities and delays. He would not be “normal” and his life would be filled with care 24 hours a day for possibly the rest of his life. And IF he didn’t have neurological issues or delays, there will most certainly be physical delays. And IF he didn’t have neurological or physical delays than he WILL most certainly still have other issues than his kidneys.
Once they were each individually done, they let us have a few moments alone to “discuss” whatever we needed to discuss. By that time I was so overwhelmed and my heart was so shattered I was crying. I was done. I was just begging God to make this day be over with.
They all came back in and asked what we wanted to do…. intervene or let nature takes its course. And then my husband spoke. He said we still wanted, despite the risks, to do the surgery on our son. We still wanted them to do whatever they could to save him and give him life. If they are able, then it is obviously God-given. The Lord is giving us that small chance… take it!
One of them came back with Quality of Life and how it would more than likely NOT be good. And that is when I spoke. I think it might have been the anger built up inside me. But I just interrupted at this point and said
“You let US worry about his Quality of Life. Obviously if he does survive and he does come home he will be in OUR care… HIS PARENTS… You let US worry about how his life will be. ALL WE NEED FROM YOU IS TO GET HIM HERE!! THAT is your job. THAT is your ONLY job!! You get him born!! (And then I looked at the neonatologist and said) YOU get him healthy. You save his life!! You get him through the NICU and YOU get him discharged. WE… (and I pointed to myself and my husband in dramatic fashion) WE are his parents. AND WE will do ANYTHING and EVERYTHING to make sure he has the best life possibly. WE are in charge of the quality of life that he will have.”
I think everyone, including my husband, were a little dumbfounded. A little shocked, even. This entire time since we first stepping into the office a few short weeks ago… I had been a big ball of emotions. Crying.. worried.. full of fear and just really really sad. I wasn’t one for many words. I felt like I was a zombie just going through motions. I felt like I was floating on water and just going with current.
But it wasn’t until THIS DAY that I had really said anything. All these emotions finally just exploded. I was so done. No one was going to continue to tell me bad news. I was done. And I let it out. And I made sure they understood who they were dealing with from here on out. They weren’t dealing with a scared or timid mother… they weren’t dealing with ignorant or uneducated parents… they weren’t even dealing with ME… they were going to answer to God. They were going to answer to Him. They were going to have to deal with and live with the fact that they had a chance to give God His Glory, but they didn’t. And MY son was going to help them with that!! Here is their chance to help with God’s little miracle. Here is their chance to finally put the science they know to the side and believe 100% in God. Believe 100% in Miracles. This is, after all, a christian based hospital… BELIEVE IN GOD’S MIRACLE!!
After I said what I said and spoke my position and my peace, we had to see a chaplain and palliative care counselor. We were given all the information they felt we needed to know about the life we would possibly be living. I had so much animosity towards these people, here we are two years later, and I still feel bad for how I must have looked like to them. I was basically done with listening. SO as they spoke, I didn’t make eye contact, I wasn’t acknowledging them and I had nothing to say to them. I just wanted them out of my life. We weren’t going to need bereavement support or a palliative care nurse. We weren’t going to need help with how we would care for him in his last days. I didn’t need information on burial services or carry-to-term information. I don’t need any of that. Ya’ll can go… my son is going to live.
Here we are, two years later, and we are once again faced with Quality of Life. Only this time, it is a reality. It is here… this is where the going gets tough. This is where we put into play the words I lashed out. This is where I prove that Matthew will continue to have a great, happy and FULL life.
Quality of Life
Believe in Miracles.
Do your best.
Be filled with JOY.
SPEAK the miracles you BELIEVE IN.
Don’t give up.
Don’t get down when the roller coaster dips.
Your family needs you.
Life is what you make of it…
Make it a great Quality of Life.