I am currently a part of support group for parents of babies who have been diagnosed with the same complication as our son, Posterior Urethral Valves. And a new mother recently posted about how overwhelmed she is right now. She had also done the procedure that we did for Matthew…placing a shunt in his bladder while in utero. She gave birth to him about two weeks ago and he is currently undergoing all the surgeries that he needs for dialysis catheter placement and he is going through all the complications Matthew did.
She posted in the support group wall, almost like a rant or a moment of ‘freak-out’. I can perfectly visualize her at the very moment that I read her post. She said that she doesn’t know how us mamas did it. She doesn’t know if she can take much longer. She said that she decided on the in-utero surgery months ago and thought that it was going to make her son better. She got him there alive but at what cost? Now that he’s alive and in NICU, she has to make some very important decisions about work, their finances, his future health… she’s overwhelmed.
Her post reminded me of a PBS Special I saw about in-utero fetal surgery. it was called ‘Twice Born’. There was a tiny tiny segment about a mother pregnant with a son with PUV. And in one of the clips, the mother said once she heard about what her son may go through after he is born, IF he survives birth, she thought it was “cruel and unusual punishment”. She didn’t want to put her baby through all that it entails for him to survive. But in the end, she decided to go through with the surgery and it did save his life. Unfortunately the show stops at that part and shows nothing more about the lady or her son. I don’t even know if the boy lives long or what. But I remember watching the show and being angry at the mother!!! How could she say such a horrible thing??? Cruel and unusual punishment??? Is that what it is to save the life of a child??? her child?? MY CHILD???
AT WHAT COST? At what cost is it to save a life of a child? To save MY child? I then ran through all the ups and downs we have been through with Matthew. And I had to ask myself the questions that I have never asked myself before… was it worth it?
I remember the day we were told about our life saving options and the doctors ran through everything that was probably going to happen after he was born… IF he survived. My husband and I didn’t even have to think about it. There was never any kind of forethought or question about if we should save his life despite what he may have to go through to be healthy. We didn’t second guess ourselves. We didn’t have ANY regrets. All we kept our thoughts and minds on was…. WHEN HE GETS HEALTHY.
Doctors said that he will have to go through all this yuckiness… to get healthy. And we grabbed hold of that HOPE. We grabbed hold of THAT VISION. The vision of a HEALTHY SON. And nothing was going to get in our way of HOPE. We wrapped our hands and hearts around God’s Promise and took our leap of FAITH. We relied on Jesus to get us through everything. We let the Lord have Matthew back. We gave Matthew back and told Him to do what is HIS will. Whatever is meant to be with Matthew… let it be. And we cried and rejoiced when the Lord got Matthew healthy enough to come home… and now healthy enough to simply wait for His timing… for when it is time for Matthew to get a new kidney. God knows when that will happen… and we Praise Him for our wait.
The advice I gave this young mother was to simply HAVE HOPE. To look at her son right this moment.. take a deep breath… look at her son. Look at how his hair curls, how his nose wrinkles, how he opens his eyes when she gets close to him, how he knows the voice of his mother… take that moment in.
Moments come and go so quickly. If you don’t learn to cherish those simple yet precious moments, you will forget them… and they will forget you.
I told her NOT think about the future… because it is out of her hands. She doesn’t know what is going to happen… her son may be perfectly fine after surgery… he may have complications and need more surgeries… he may not need long term care… he may need nursing care at home. Nobody knows but God. And God has our lives pre-planned. As long as we have faith and believe in Him, everything else works itself out.
I know it’s hard. I know it feels like you can’t take it anymore. I know the PAIN, the excruciating PAIN you feel. Your body hurts, your heart hurts, your brain hearts, eyes hurt, BREATHING HURTS. I know… God NEVER promised easy. He didn’t even promise time. But He did Promise LIFE. Your life… your child’s life… God’s Promise. Hold on to His Promise.
“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”