(Here, I share my heart- a letter to my 2nd daughter about a very trying time for her and for our family. It is a personal documentation of the emotions, spiritual journey, and God's action that we felt surrounding us in our most desperate moments. I feel humbled by this entire experience, and hesitate to share it publicly. If anything, I pray that you will see, from reading this, the incredible ways that the Lord uses others to answer prayers, and how only when we surrender, can our eyes be opened to His action...for He is always there, but we cannot always see Him. I removed personal names and details for the purpose of this blog.) _______________________________________________________
To my Darling Daughter,
The events that have transpired these past couple weeks together form an incredible journey of faith. Not even 3 years old yet, I fear that your memory of these days will be traumatic. I do not blame you. What you have been through I would not wish on any human, except for myself, if it would have meant that you would not have to suffer. And so, I record all that has happened here, so that one day you, too, may appreciate and recognize the amazing way the Father and Holy Mother have worked in your life during this time, and how very special you are to them.
Approximately three months ago, you fell ill with your first evident kidney infection. Over 5 days time, your fever fluctuated between 101 and 104, with no other obvious symptoms. Having been through a similar experience with your baby sister, I immediately recognized it as a kidney infection and sought treatment. Once healed, we took you to your baby sister's specialist (we had discovered 5 months ago that she has level 4 bilateral VUR, or kidney reflux). A quick ultrasound revealed that you have one kidney significantly smaller than the other, which may be that way from birth, or it may be a result of VUR. Dr. P sent you for a VCUG, and sure enough we discovered you also had bilateral reflux (level 3 on the left, level 4 on the right, with a possible extra ureter on the right). In the meantime, you suffered 2 more severe kidney infections. Dr. P recommended, and we agreed, that due to your already hurt kidney, we needed to “do something” about the reflux. We prayed and prayed about our two options, although we knew deep down which one was right. Deflux (an outpatient procedure) would have only a 50% chance of working on both sides to correct the reflux, while open surgery would have a 96% chance of correcting the reflux. We choose the surgery, and felt confident that was the Lord’s will. We still feel confident of that. We scheduled the surgery for April 29th, and administered a daily low dose of antibiotic in the meantime to prevent infections.
We felt a great deal of peace about your upcoming surgery. At the same time, I had also heard the voice of the Lord ask me if I was willing to suffer. I said “yes.” Who can say “no” to such a loving Lord? In Adoration, praying about your surgery, we both felt confident that the Lord was walking with us, and would see you through it. I cannot describe to you the immense amount of peace we felt. When we would tell people about your upcoming surgery, they would wonder why we seemed so mellow about it. We were leaning on God. But never once did we flinch…that is, until 1 week prior to surgery day.
It was Good Friday, and I was laying down with your baby sister for a nap. All of the sudden, as if out of no where, I felt anxiety wash over me like a tidal wave. I became scared, frightened, and felt alone. When I revealed my fears to your Daddy, he confessed he was struggling the same way that day. We made a joint decision to rely even more heavily on the Lord. We felt strongly that we were doing His will.
The day of your surgery came. The time of your surgery kept changing, but we ended up arriving at 8am. Big Sister was with Nana and Pop-pop, and Baby Sister was with Grandma. Everyone was praying for you, including countless prayer lists, communities of religious, family, and friends. You were surprisingly chipper that morning. The nurses in pre-op simply adored you. For the few weeks before, Daddy and I had been preparing you mentally for what was to come, describing what was to happen at the hospital, and that your mommy and daddy would be with you. I had also told you that there would be one part of the day that mommy could NOT be with you (when you would go back for the surgery), but that Mother Mary would hold you then. You would light up, eyes glowing, saying “Mary? Really?” and then diving in for a big hug.
We waited…and waited…and waited. Your surgery, the last we had heard, was to be at 10am. We didn’t know it at the time, but your surgery actually ended up being exactly from noon until 3pm, on the nose. The hours of the crucifixion.
They gave you versed to make you sleepy. You allowed the child life specialist to carry you to the doors, where we said good bye to you. We were not allowed to follow. I was holding strong as you were carried away from me…until you called out “MOMMY!”- I lost it. My own mom was right next to me. She knew the pain, she anticipated it, and seeing my face she grabbed me for a hug. I didn’t let go.
During your surgery, we prayed, we ate, we prayed some more. A friend, Mr. Michael, brought us coffee (a welcomed distraction). Grandma sat with us, baby sister asleep. Every once in a while the woman at the desk would call us over and give us an update from the OR, but never with much information. Then, at 3pm, we received news that the surgery was over and Dr. P would be out shortly to talk with us.
Dr. P called us to a “family consultation room.” He reported that you had done very well, but for some reason you bleed an unusual amount. He said he cleaned it up but couldn’t figure out why you “oozed” so much. Other than that, the surgery had been successful, and you would wake up soon.
Daddy and I, relieved, were escorted back to post-op to see you. Our sweet baby, sound asleep with an oxygen mask near your head, heart monitors beeping, and an IV dripping. Your face was swollen from the saline. When you started to stir, you wanted me close, so I leaned over and “held” you in the cradle (it was at that time we requested that you be moved to a twin bed, so we could lay with you).
Your recovery that night and the next day was slow. Your catheter came out Saturday morning. You bled a great deal. You were very grumpy (I would have been, too!). At one point, you became irate with me. You said that Mary did NOT hold you, and that you did NOT see her in your surgery. I assured you that she was definitely there, even if you didn’t see her. I confess I was disappointed that you did not remember her, and even more so that you felt I had lied to you.
We stayed an extra night because you weren’t doing as well as we, and the Dr., would have liked. Sunday morning we were discharged and came home.
The day progressed, but you did not. You vomited frequently, refused food and water, and gushed blood with your urine. Daddy and I were worried. Monday morning we told Dr. P, and he became concerned and told us to come to his office. An ultrasound showed swollen kidneys, a full bladder, and you would not empty it. He catheterized you, and it immediately drained a large amount of blood. Concerned about your blood loss and inflammation, he sternly recommended that we head straight for the hospital. Daddy and I prayed, but the knot in our stomachs would not go away. You were our little baby, and to see you suffering was more than we felt we could bear.
Upon arrival, we were admitted immediately, blood was drawn (with some difficultly since your veins were not easy to find), and they tried desperately to insert an IV. You were extremely dehydrated, so your veins were not cooperating. They brought in 3 different IV teams, even 1 from the PICU. Each time they stuck you (in the hand, arm, and foot), you cried out in pain, “NO, MOMMY! PLEASE TAKE ME HOME RIGHT NOW! WHY DO THIS, MOMMY? NOOOOOO!” Luciana, words cannot describe the pain that filled my heart when you cried out those words. There I was, your mother, doing what I knew we had to do to save your life, yet you did not understand…you just thought your mommy and daddy were not rescuing you. This was an enormous cross for us both.
Finally, they got an IV in, although the connection was weak (they would have to find another port in surgery). The nurse assigned to us those few hours was very compassionate. She gave us a head’s up that you might need a blood transfusion, and that the Dr. P would be calling us shortly. The phone in our room rang. I answered.
Dr. P: “Ms Ferrante, I have the blood results.”
Me: “Yes?”
Dr. P: “They are not good. In fact, they are very bad.”
(I was silent…listening for more…bracing myself for the words that were about to come through the phone line into my ear)
Dr. P: “Her hemoglobin should be 10 or over, but it is a 5. She has lost too much blood and needs a transfusion.”
Me, surrending: “Okay.”
Dr. P: “I do not know why she bled so much. I’m afraid I need to take her back to the OR. I will try to find the cause of the bleed. I will first try to use a scoop, so as to avoid opening her back up, and try to cauterize any bleeds that way, but I might have to re-open her. Also, the test shows that her kidneys are not draining, so when I get in there and see the level swelling we’re facing, I may have to insert some stents in the ureters to hold them open and allow proper draining. Those would have to come out later.”
Me, surrendering again: “Okay.”
Dr. P: “Ms Ferrante, I have never seen this happen before. I do not know why it happened. I am so sorry. She bled a lot in her surgery last Friday, I thought I got it all, but I missed something. I am so sorry. But, this is the reality right now, we have to accept it, and I’m going to do everything to fix it now.”
Me: “Okay. Yes. Matt and I want to do whatever is necessary for our baby girl.”
Dr. P: “The OR is telling me they can give me a room at 7:30pm.”
Me: “Okay. Thank you, Dr. P.”
Dr. P, somber: “I’m sorry. See you soon.”
I hung up the phone. Your Daddy stood in front of me, apprehensive of the information he knew I was about to relay to him. I hugged him close, and whispered all in his ear. We hugged, and cried, then we looked at you and cried some more. Then I grabbed my cell phone and began trying to track down a priest to come be with us, hoping one could bless you before your surgery. Everyone was so concerned for you. News to pray for you spread like wildfire. Our families were praying, my brother the seminarian had his entire community and everyone he knows praying, entire religious communities were praying, priests, friends, our Regnum Christi teams hearded together...we were covered in prayer. I called Grandma (who had just returned to Maryland that morning), and she caught first flight back to Charlotte. She would arrive just as your surgery was ending.
At 7:45, they were preparing to wheel you back. I ran out to the waiting room to update Nana and Pop-pop, and to briefly tell Isabella what was happening (trying not to scare her…oh how she was so concerned for you). Jill, a dear friend, was there. She came as soon as she had heard.
At 7:55 I ran back to your room, where they began to wheel you on a bed. I climbed into the bed and lay next to you, holding you. You were asleep. I stroked your cheek and pushed the hair back from your forehead. I kissed you tenderly, and prayed. I put my hand on your chest and felt your heart beating heavily beneath it. My mind, as if in a time-warp, went back to that night you were born, when you were not breathing, and I put my hand on your chest to feel your heart pounding in the same manner. All the emotion of that night rushed back to me as well. These were 2 times where I feared for your life, and they met in my heart.
We met up with Dr. P. He again apologized, and I said, “Take care of my baby.” We walked behind as they wheeled you down the hall. We stopped where we were not allowed to follow you. No one else was with us…the empty late night halls were eerie. We watched you until we couldn’t see you anymore, and the doors closed. Then, we turned, walked down the hall to the waiting room. As soon as we walked in, Jill was there and walked over to hug us. I burst out crying. I was so scared for you. I did not feel the Lord. Where was He? I knew He was there, but I did not feel Him.
Jill shared with us the same relics and rosaries that pulled her through her own son’s major heart surgery. We prayed the rosary together. During the rosary, head in my hands, I completely surrendered to the Lord. I said to Him, “My God, I KNOW that you are here. Even though I do not feel you, I BELIEVE that you are here…I KNOW that you are here. I KNOW that you would never abandon us. I do not ask for any consolation. I am content to suffer this aridity for your sake and the sake of your Kingdom. I firmly believe in you.”
It was only then, when I completely surrendered, and told the Lord that I did not want any consolation, that He revealed Himself to me. First, with His breath that rushed over me and surrounded me with peace. I felt Him holding me. Then (and this is all while we prayed the rosary), I asked his mother to be with us, but to especially be with you. I knew she was. I prayed that you would know she was there.
After the rosary, Daddy and I were much better equipped to suffer. You know, Mary suffered a great deal watching her own son suffer. We had received a phone call from the OR with the update that they had to open you up, but you were doing well. Another dear friend arrived with a meal. She had been with us earlier when we found out you would have to have surgery again. She gave me a crucifix to hold, and was such a comfort and support. Even she noticed, however, that upon this 2nd visit we were much more peaceful than when she had seen us earlier that day, crying at the news of the impending surgery. How blessed we were to have such good friends. Many more friends were praying and sacrificing from home, and, as I was later told, repeatedly refreshing their email accounts as they anxiously awaited an update.
We were deeply grateful to Jill for being with us, but assured her we would be alright if she needed to return home to her own family. She walked out of the waiting room and hit the elevator button…but turned back around and popped her head in to us. She said, “I smell roses! I smell roses! She’s here!” Mary was there! I ran to the hall way and breathed in the most beautiful and overwhelming scent of roses, and a smile came across my face. I whispered, “Thank you, Mary. Oh, thank you!” The smell filled the hall way leading to the doors where your surgery was. Later, I found out that at that same moment, a close friend had prayed that Mary would make herself physically known to us that night.
Soon thereafter, Fr. Rick arrived. He had come as soon as he could. His presence brought great comfort for us. It was 11pm before Dr. P came out to talk with us. He said he had expected to find something so “horrible” in there that was causing the bleeding…but all he found was a couple tiny bleeds in your bladder. He said it really doesn’t make sense…you should have had a big break in there somewhere. There was “no explanation.” (We immediately knew there was an explanation- Mary had begun to heal you before he got in there). He cauterized the couple small bleeds, and put stents in all 3 ureters (you do have 2 on the right side). Then he warned us of infection since the stents “cause reflux.”
Hold up. Reflux? The stents….CAUSE reflux?
“Hold on, Dr. P.…isn’t that what we came in here to fix in the first place,” I asked, somewhat amused at the irony. He assured us that the new reflux would be temporary…once the stents come out, you would be reflux-free.
We went back to see you. Wait, weren’t we just here? It was dejavous…only this time we knew how to make better use of our suffering. Trusting in the Lord doesn’t mean you are suddenly devoid of all ill-feeling. No. If anything, it means you feel it more strongly. I imagine Mary when the “sword” pierced her heart…the sword of seeing her son suffer. She was so close to him, so deeply united, that she suffered it, too. I felt your suffering, and then I also suffered the feeling of helplessness, of wanting to “make it stop” for you, but not having the ability or power.
You were waking up…but this time angrily. Poor sweetie, you had already been through so much. Settled into your room on the 9th floor, I watched you, torn. I was torn because I knew my baby at home needed to nurse, but how my heart wanted to be by your side and never leave you. Daddy stayed with you, but I had to go. That was the hardest thing in the world. I went home (it was after midnight), slept for a few hours, nursed your baby sister, and returned the hospital before daylight the next morning.
Whatever we thought was “difficult recovery” before was NOTHING compared to the “recovery” we now witnessed in you. You were BEYOND miserable! You cried, yelled, moaned, ordered us around. Nothing I could do would sooth you. In fact, you would even yell at me, “GO AWAY, Mommy! No want YOU, Mommy! Me want DADDY! GO AWAY! LEAVE!” I cannot describe to you now how much of a cross this was for me. I wanted NOTHING more than for you to WANT me, and to allow me to comfort you, and that you would be comforted by me. This was the most difficult part of the cross for me to carry. Afterall, I am you MOTHER...in my mind, you should be begging for me to hold you (and you did later- but for those few days, this was part of my purification). I thought of how much Jesus wants to be close to me, to help me, to guide me, and yet how often I push him away or ignore him, or neglect him. How much suffering that must cause him! This was a great exercise in patience for me. The first few times you yelled at me or pushed me away, I would get upset. It was so difficult! But I tempered myself, with God’s grace, and instead began to just stand at a distance. I understood that you were simply grasping to control whatever you could, since so much had happened against your control that week. I patiently waited until you felt you needed me. And yet, I did not leave…because I knew that should you decide you wanted me, I HAD to be near by. I was there FOR YOU, even if you didn’t want me…I would be there just in case you did. And then, I praised God that you had a strong relationship with your Daddy and that you felt safe with him.
Eventually, by the afternoon, you would ask me to hold you, or lay with you, and several days I would lay there up to 6 hours…holding you. This was the cycle that repeated almost every day you were in the hospital.
Tuesday night (24 hours after the 2nd surgery), you did not look good to me. Something (my guardian angel?) told me I needed to stay, but at the same time I knew your sister would need me at home to nurse (I had not nursed her, at times, for close to 6 hours- I had previously never left her as I do not believe in leaving my babies unless for emergency circumstances...this qualified). I did go home, nursed the baby, and then, following that inner instinct to return to you at the hospital, I gathered my things to return. Now there were severe thunderstorm warnings. These thunderstorms were capable of producing hail and tornadoes. I diligently watched the radar online, looking for a window to drive back to the hospital. I noticed that the more dangerous storms would pass by 10:30, even though my entire route back to the hospital would be covered in torrential downpour until after midnight. I decided to leave as soon as the worst was over, but prepared myself to drive in a downpour.
While I drove, I prayed. I cried out to my Father for help, for healing, for courage, and for peace. Extremely tired, and for fear of falling asleep while driving, I hit the radio on and “randomly” (is anything ever truly random?) selected the country music station. I don’t know why, I just did (or maybe someone else selected it for me?). A song was on (found out later it is by Rascal Flatts)…and I was immediately drawn to the words, and started to cry…for I knew my Father was speaking to me.
It’s like a storm
That cuts a path
It breaks your will
It feels like that
You think your lost
But your not lost on your own
Your not alone
I will stand by you
I will help you through
When you’ve done all you can do
If you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I wont let go
It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh it finds us all
And we’re too small
To stop the rain
Oh but when it rains
I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight I thanked Him for this great grace of hearing His voice in those lyrics. I also prayed that I could be that same support for you, my darling girl. These lyrics were, and are, my words to you, and they are Christ’s words to us both.
It was then that I noticed, not a drop of rain had fallen on my windshield. I had been driving for 20 minutes now, in what was supposed to be the downpour of the century, and not ONE DROP of rain was on my car! Everything was drenched around me. I immediately recognized this as a grace, that I didn’t have to drive in the rain…that the Lord was sparing me that minor inconvenience. Later, I would discover that some friends had been driving at the same time in the same area and were in terrible rain.
Several more times that week (I think 4 in total), did it happen where I was in the car (late at night or in the wee hours of the morning), praying a desperate cry to the Lord and I would turn the radio on to help me stay awake, and that same song would be playing. Every time, it made me cry because every time, I knew it was no coincidence.
Back to Tuesday night, when I felt something (my guardian angel…or yours) calling me back to the hospital. As it turned out, that was your most difficult night. Your catheter had to be removed because it was clogged and was not draining. You were in immense pain, and had not had a bowel movement. It was a very difficult night, for you, and for your daddy. I was glad I was there, not only for you, but because I knew your daddy needed me. How it pained him so much to see you suffer. This was a great cross for him, too.
Wednesday morning I emailed a desperate cry to a close group of friends, and they redoubled their prayers not only for you, but for me. I was feeling so weak. How fickle I am that I can have such an amazing and real experience of God’s presence and then turn around and allow myself to feel so alone! In my miserable humanness, I was feeling weak. I was feeling too weak to pray. I needed prayers. Let me just say that I am SO blessed to be surrounded by some amazing women. One friend,\who had recently been experiencing a total healing of her “hopeless” psoriasis and arthritis, and also of her past cancer, prayed that her healing be REVERSED for your sake. As soon as she prayed that, she felt her pain return (which she had only just been pain free for a few weeks…for the first time in years). It was also at about that time that things turned around for you, and for me. I felt a renewed sense of peace and strength, and you began to show improvement (albeit gradual).
Some friends, the Tortoriches, came with a gift for you: a statue of Mary, and a relic of the newly beatified John Paul II. When you saw the Mary statue, you held it close and tight. It was evident she was special to you. Then later, when your visitors had left, you turned to me rather non-chalantly and said, “Momma, Mary hold me when I was asleep (in surgery). We have to bring her roses when we get home.” Then you returned to watching your movie, with Mary by your side. I smiled a warm smile and whispered a quick yet heartfelt “thank you” to the Blessed Mother. Rest assured, you did give Mary 1 dozen red roses (in our grotto out back) when you returned home later that week.
So many people called, emailed, texted, prayed, and sacrificed. Every day we had fresh meals brought to us in the hospital by dear friends. It was a firsthand experience of how the Church is the Body of Christ. When one member is hurting, the whole body hurts, and seeks healing. See, Christ needs the members of His Church to be His vessels to each other.
Your big sister was deeply concerned for you all week. How she missed you at home! She prayed for you, drew pictures for you, and made plans to do special things to make you smile.
Deacon and Monsignor, from our Parish, came at different times to visit you. Every day, Grandma brought you baby sister for a visit, and Nana and Pop-pop came with Big Sister.
The nurses on the floor simply adored you, and treated you like a princess. To make you smile, we would talk to you about your 3rd birthday coming up, and you would leap into planning your “princess party.”
It was Saturday morning before we were discharged. You were grumpy, but we knew at that point you would heal better and more swiftly at home, especially since you were now independent of the IV. Uncomfortable though you were, you were happy to be heading home. You still had a catheter that was draining into a diaper. We would take it out a few days later (and then go get another one put in a few days after that…oh what a journey this has been!).
My darling girl, although you are barely 3 now, I hope by this letter that you will someday know more completely and accurately the events that transpired these past 2 weeks. I know it is not over, and there is much ahead…but one day, you will see that even as a young child you suffered for the Kingdom. You see, my dear child, suffering is necessary. The cross, your cross, is a very real and key part of your life. You were chosen, as not many are, to carry a special cross at a young age. Not only that, but it appears you were destined to belong to Mary from the very beginning. You were born in the month of May (the month of Mary), named “Regina” (your middle name), which means “Queen,” for Mary Queen of Heaven, your 2nd surgery and most of your recovery happened in May, and Mary was present in a very physical way with you during that time. In addition, at your birth, you did not breath for an agonizing 4 minutes, and it was the “Hail Mary” that I repeated again and again that brought your first breath. You belong to her, and you are precious in her sight.
I love you, my sweet girl, my Light. You are destined to be Christ’s Light in a darkened world.
Yours Forever,
Mommy
