February 13, 2013

I think it is time to really sit down and be honest. Probably because I feel you deserve it. I am not going to pretend for one minute that any of this experience with Beckett has been easy. In fact, is has been extremely hard. I would not wish this on my worst enemy. If someone asked if I would do this again, knowing now all God has used Beckett for, I don’t know that I could say yes. This is painful. I don’t know if I can even effectively put into words how devastating it is to be told your baby is normal and healthy one minute and the next minute find out he has a life-threatening heart defect and will need to undergo multiple surgeries over the next few years, all the while being told it is a very difficult road with no guarantee how it will end.
I want to explain how we found out Beckett had Hypoplastic Left Heart Syndrome for those who have not heard the story. It was not until 24 hours after Beckett was born that he began to have trouble with his oxygen level (praise God for 24 hours of enjoying a healthy baby!). Jonny and I had not slept for two days, so we decided to put Beckett in the nursery for the night. It was around eleven o’clock when they took him down and Jonny and I headed for bed. Within forty-five minutes the nurse came in and woke me. She told me the nurse in the nursery thought Beckett looked a little dusky around the mouth and decided to check his oxygen. She said it was lower than where they want it so the NICU doctor came to look at him and they were going to keep him in the NICU for a little while to observe him. She said she would come get me to go see him when they had him settled. No big deal right. She came back about half an hour later and said they weren’t quite ready yet. When she finally took me back it was about one in the morning. I walked in to see my son hooked up to monitors, IVs running, him crying wildly, and multiple people in the room. Clearly not just a little oxygen problem. They told me they were getting an x-ray, had drawn blood cultures, antibiotics were on hold in the pharmacy, and they were going to do an echo. The doctor informed me it could be pneumonia, a collapsed lung or possibly something else. I sat at his bedside trying to keep him from crying while they did the echo. The technician bluntly said to the doctor, with me right in the room, “well that’s an awfully small left ventricle”. Not exactly how I would have wanted to find out something was wrong. Dr. Cameron was the doctor that was there, and he used to work here in the NICU Beckett is currently in. He was therefore familiar with the condition and began to explain exactly what we had ahead of us. I immediately sent a nurse to wake Jonny and broke down in tears. I sat and watched as they put IVs in his belly button, started him on medicines, intubated him and more. All this took place over a few short hours. Jonny called our parents, I was discharged from the hospital, and we followed an ambulance for the longest two-hour drive of our lives. So there it is. Our world was turned upside down in a matter of hours.
So back to the reality of what this has been like. I think my pain has been compounded by the fact that I have medical training, yet there is absolutely nothing I can do for Beckett. It is almost unbearable to know you can do nothing for the life that depends on you for everything. I have felt almost every emotion humanly possibly. I have shed more tears these last weeks than in my entire 27 years leading up to this point. I have been frustrated when I see healthy children. I have sat in waiting rooms praying they would simply tell me my son was still alive. I have been given news on multiple occasions of the reality that my son might not live. I have wrestled with God over and over. I have pled on my knees before His throne to give Beckett life. I have made promises to God, as if they would make a difference. I have watched my son endure more pain than most will experience their entire lives. I have sat helplessly at his bedside. I have seen his body lifeless and limp, waiting for something as simply as a gentle squeeze of his hand on my finger. I have waited for results of potential brain damage. I have felt guilt for sleeping at night while Beckett lies in bed fighting for his life. I have struggled with feelings of leaving Beckett alone. I have questioned if he knows how much we love him. I have doubted. I have had to surrender my son’s life, acknowledging that this if far beyond our control. But…
I have never been alone. I have never prayed more fervently. I have never known such peace. I have never felt God’s presence in a more tangible way. I have never loved more deeply. My faith has increased exponentially. I have seen first hand the miraculous power of God. The body of Christ has surrounded me. I know the true meaning of family and of sacrifice. I have let go of my pride. I have fallen more in love with my husband. I have held my son. I have seen him smile. I have changed his diaper. I have held his hand. I have dressed him in his clothes. I have given him a bath. I have seen his progress. I have been blessed beyond measure. God has granted me the strength to make it through each day and an attitude to never ask why.
This has been hard. This IS hard. But nothing has been outside of God’s plan for Beckett, and for me. Beckett’s life is a testimony to His faithfulness. Jonny and I have not made it this far by any measure of our own. It is the saving power of God within us. So yes, this is hard. Every day is hard.
But through it all, Beckett’s heart beats!

— with Jonathan Rupp at st Vincents womens hospital.

3 thoughts on “February 13, 2013

  1. Linda Rupp says:


  2. Christy Bailey says:

    Beautiful!! My mommy heart sure does break for you! What a wonderful testimony. Thank you for sharing!! Praying for you all!!

  3. Melissa Spahic says:

    You are an amazing mommy and blessed despite what you are going through. I have never met you but I love you baby and pray for you everyday. I have seen miracles, signs and answered prayers and was saved in December. GOD loves you and everything happening is for the good of you and Beckett. Hang in there mom, and cherish every breath.

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