Dearest Family and Friends: I have been writing down notes the past weeks and finally decided to group them all together in this long post, so I hope they make some sense. I am too tired to go back and try to re-write anything right now.
Cold Virus: Sara ended up not having RSV but instead has a similar virus called Adeno. The nurses continue to suction her mucous out on a regular basis. She has also had a fever off and on all week. The doctors are not certain if the fever is related to the cold or if it is due to her brain not being able to regulate her body temperature. Her condition continues to be stable.
The coma: As a Heart Mom, I have been reminded each time Sara has a surgery that she will be at risk to brain injury. Nevertheless, I never imagined my beautiful little red-headed princess would be lying in the hospital in a coma. I was as well prepared as I could be for heart complications, surgeries; you name it, but never for this. Yet here she lies on the bed next to me, doing little else but breathing. Oh how I have longed for Sara’s little hand to squeeze mine, to hear her little voice say “Mommy” or to see her look into my eyes as I tell her how much I love her!
When my sister, Kristin, was here visiting Sara, she commented on how Sara’s hospital room was a sacred place and I believe that is true. I feel the love of our Heavenly Father here with Sara. I also feel my Mom, her Grandma Kaye, close by right now. In fact, I’ve always felt like she has watched over Sara. Perhaps she is able to be with little Sara right now during her state of unconsciousness. My dear Mom passed away during open heart surgery when I was seven months pregnant with Anna and Sara. We named Sara, Sara Kaye, after her. What a beautiful, faithful and valiant woman my Mother is. When I think about her example, it gives me strength and courage, especially during difficult times.
A pattern of studying and learning, asking those with experience, and praying for guidance: During my twin pregnancy, we learned of Sara’s heart defects. Immediately, I began researching her defects and then sought out other Moms who’d given birth to babies with similar diagnosis to Sara. I toured three different hospitals, and interviewed the top surgeon at each of those hospitals. I also joined support groups for parents of children with congenital heart defects and asked them why they liked or didn’t like their child’s doctor and surgeon. We prayed for guidance regarding all of medical decisions we had to make in Sara’s behalf. We also prayed that she would make it here safely with her sister and that she would live through the surgery we knew she would need shortly after birth.
When Sara had a stroke after her second heart surgery (Glenn) I quickly put in place occupational and physical therapy for Sara in our home, which she had almost daily. She continued with this therapy until her right-sided weakness was gone and we could not detect it any longer.
When Sara was finally 30 lbs and it was nearing time to have her last planned surgery, the Fontan, I searched for other Moms’ blogs and experiences so I could be prepared for possible complications. I started this carepage so I could keep family and friends informed about how she was doing and so we could feel their love and have a support system in place if we needed it.
Advocating for Sara and our test as her parents: Over the past weeks, Steve and I have felt like two college students who’ve been given this big assignment or test, except, of course, this is not a school project we’re working on, this is our daughter’s life. We’ve researched Sara’s condition; we’ve talked to doctor after doctor, often asking the same questions see if we get different responses. We’ve read medical journals as well as parents’ accounts of when their children did not wake up after cardiac arrest. We’ve prayed and prayed and then prayed some more.
Through all of this, we have been so grateful for the love and support of family and friends. I don't know what we would do without the help and support of my Dad and Susan and my brothers and sisters who have been there to help us with whatever we need. We also feel the support and guidance of a loving Heavenly Father who knows what is best for Sara and for our family. It is His will that we seek in the quiet moments.
I believe that I have been prepared for this trial, just like I was prepared for my Mom’s passing. I think trials will come in life, no matter what, and hopefully we are seeking the Lord's guidance in our lives so He can prepare us for them. I also believe in asking those around us for help in getting through our trials, because I don’t think we are meant to endure them alone.
Steve and I talk about how there must be something we are to learn from this experience with Sara. We have already been prompted to make certain changes in our lives for the better. We also feel closer as a family and our prayers are more sincere and heartfelt than they’ve ever been. I’m sure there are many more things to be learned as well. I also know many of you have expressed how hearing Sara’s story has touched your life in some way and made it better.
Through all of this, we also feel a deep sense of gratitude for the blessings we’ve received and continue to receive and for our relationships with God. I can’t imagine going through this not knowing that our family will all be together again someday. For that knowledge and promise I am the most grateful.
I teach a class of sweet, beautiful, twelve and thirteen year-old girls each Sunday at church. One of those sweet girls recently emailed me recordings of the thirty or so little children at church singing songs for Sara. Below is part of my email response to her:
I know that part of my preparation for this difficult time I am experiencing was being your Beehive teacher. I remember the last Sunday lesson I taught was entitled, “Coming to Know the Savior.” I expressed to you then and I can say it with even more conviction now that the Lord knows each one of us personally and that His sacrifice for us was personal. I know He's felt exactly each of our pains and sorrows and that is why He can succor us the best.
What a beautiful Primary song the children sang on this recording you sent me. I had to look it up, so I could read the words again. “I Know That My Savior Loves Me” is my new favorite song. Like the song says, “I did not touch Him or sit on His knee. Yet, Jesus is real to me. I know that He lives! I will follow faithfully. My heart I give to Him. I know that my Savior loves me.”
Seeking God’s Will and Feeling Peace: I absolutely know that God can heal Sara and make her whole again if that is His will for her. I also know that every path Steve and I have explored to understanding Sara’s current condition leads to her ending up doing little more than she is now.
The hardest thing I’ve ever done was to get on my knees and express to God in prayer that I’m willing to give Sara back to Him if her mission on earth is now complete. I pray for peace to know if that is God’s will.
Posted Feb 5, 2011 10:48pm
by Alex Fink
Melinda and the entire Ferraro family:
I hope and I pray that little Sara will wake up so that she can hear you sing that beautiful song to her. Your strength continues to amaze me and inspire me. Many blessings to you all!
Alex Fink and family
Posted Feb 2, 2011 9:16pm
Steve and Melinda, Happy Birthday to both of you! I hope you have found some peace and comfort on your special days. We are thinking of you, and wish we could be there with you to help, and relieve your burden in some way.
I so appreciate this update Melinda. It is a comfort to hear of your faith in our Heavenly Father. I also have thought that Sara must be with your mom, and is being comforted by her, as I'm sure you are being comforted by her as well.
Posted Feb 1, 2011 9:19pm
by Vaughn Nordes
HAPPY BIRTHDAY MELINDA! I truly hope you have been blessed with some happy feelings as all your family and loved ones have wished you well today. Certainly it's a time for all of us to be very thankful for you. I pray for the Lord to bless you especially today with the strength and comfort of His Spirit.
Steve, HAPPY BIRTHDAY to you tomorrow too! I have true joy that you are Melinda's sweetheart and eternal companion. I pray for the same rich abundance of the Lord's Spirit to embrace you too.
Posted Feb 1, 2011 6:28pm
by David Smith
We are praying for the entire Ferraro family. Your faith is an encouragement to all who read this blog. Blessings, Dave Smith
Posted Feb 1, 2011 12:54pm
by Corrie Holloway
I am just learning about your little Sara. I have been reading and looking at the photos of your daring girls. My love and prayers go out to you for all that you have been through. You are a strong person and a caring mother. I add my prayers to the many others that all will go well for you and little Sara.
Posted Feb 1, 2011 9:48am
by Barbara Lamprecht
HAPPY BIRTHDAY! I hope you have a special day where you feel how much you are loved by your family and friends. May you especially feel of the Lord's great love for you and have the comfort of His peace!
I love you!
Posted Feb 1, 2011 12:05am
by Rebecca Coleman
"These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world."
God bless Sara and your family. May He continue to pour out His love upon you. That love is much more powerful than all the burdens this world can incite.
Posted Jan 31, 2011 11:40pm
by Lori Sokoloff
The strength and faith you have is amazing. You are in a such a difficult situation, but yet you still find so many reasons to be grateful. What grace you have. Thank you for continuing to share your thoughts and feelings with us. Love, Lori
Posted Jan 31, 2011 9:55pm
by Valerie Smith
Melinda, your strength and faith continue to inspire and Sara continues to touch lives beyond your circle of support. May your faith continue to grow and bring you peace. We are thinking of you all every day.
Posted Jan 31, 2011 9:21pm
by Trina Jonas
Melinda, you are amazing! We so appreciate your updates and willingness to share this with us. Our thoughts and prayers are with your family constantly. You really are an inspiration to so many of us. With love, the Jonas'
Posted Jan 31, 2011 3:44pm
by Holly Rossiter
Melinda- You are so strong and amazing. I know heavenly father will carry you all through this difficult time,he loves you and wants you to have peace. I know how much music can help. When we lost Aubrielle one of the song that helped me was "count your many blessings" I would listen to it every morning to give me strength and peace. You are always in my thoughts and we are always praying for your sweet family.
Posted Jan 31, 2011 3:40pm
As I read your post I have tears streaming down my face, but at the same time I feel uplifted by the strength of your testimony. I am so sorry that you, sara and your family have to go through all of this. I definitely know that Heavenly Father is near and watching over you every step of the way. Melinda, you and your family are truly special and I know that your experiences and your faith and testimony will not only bless others lives but will change them forever. We will continue to pray for your continued peace and comfort along this journey. We love you.
Posted Jan 31, 2011 3:27pm
by Debbie Savage
Wow, you have gone through so much. You are an amazing woman and beautiful mother. You have a rock solid testimony! We continue to pray for Sara, you and your family! Love, The Savages!
Posted Jan 31, 2011 2:31pm
by Lori Hexberg
Thank you so much for that wonderful post. It was deeply moving and I am learning more about courage and faith through you. We think of your family everyday and still pray for little Sara. We love you!
Posted Jan 31, 2011 2:01pm
by kendrea rivera
I am deeply touched and humbled each time i read the posts. What strength you have demonstrated during such a difficult time. I continue to pray for Sara. lOVE FROM THE RIVERA FAMILY!
Posted Jan 31, 2011 1:53pm
by Terri Ferraro
I have been so touched by your words and thoughts. I don't think there has been an hour that Sara hasn't been on my mind. She is in our continued prayers. I love that little girl. I can't imagen how hard this is for You, Steve and the girls. We love you all so much and pray for your continued strength during this extremely tough time.
Posted Jan 31, 2011 1:51pm
by Sheila Browning
You have taught a lesson to all who need an example of preparing to turn over their troubles to the Lord! What sweet thoughts and inspiration you have provided, Melinda. We pray daily for an acceptable outcome!!
Love, the Brownings
Posted Jan 31, 2011 12:20pm
by brooke reynolds
I know it must be hard for you to write these updates, but I hope you know how much they mean to all of us reading them. Your family is constantly in our thoughts and prayers.
Posted Jan 31, 2011 12:18pm
by Emily Boyer
You & your sweet family are constantly on my mind & in all of our prayers. Thank you so much for taking the time to share your thoughts & feelings & as a result, teach me.
Much Love, Emily
Posted Jan 31, 2011 12:16pm
by Tarah Hemeon
Melinda- What a beautiful message We love you dearly and precious little Sara. You are such a strong wonderful woman and I truly wish I could ease some of the pain you have been suffering through this shocking experience. We continue to pray for you. Sara has taught us all something incredible and I believe we've all become closer to our Heavenly Father because of her and your enduring through the most difficult trial.
Posted Jan 31, 2011 12:12pm
by Ede Streiff
Such a touching update. You are as strong as you need to be. Keep up the faith. Love ,Ede Streiff
Posted Jan 31, 2011 12:06pm
by Cherie McManus
I too am sitting here in tears as I read again about your strength and faith in the Lord. You are always in our prayers.
Posted Jan 31, 2011 11:32am
by Summer Thacker
This was the most beautiful thing I have ever read! I sit here with tears and I have a peaceful feeling that no matter what happens... it's going to be ok. What an example you and your family are. I have learned so many lessons through this experience. Love you guys!
Posted Jan 31, 2011 11:07am
What a touching post. As I read your last line, I was reminded of the song I listened to on the way home that night. It's called "Peace" (by Felicia Sorensen) and it's what I've been praying for most for you to receive. Here is a link to a video of the song-- http://www.youtube.com/watch?v=XbNjDyFxyfc . (I don't love all of their choices of pictures for the video, but the song and it's words are beautiful.)
May you receive an absolute outpouring of peace and a firm confirmation of the Lord's will for Sara. I love you!
Posted Jan 31, 2011 10:37am
by Kristin Dutwiler
Melinda and Steve,
We pray for Sara and your family all the time. You are so strong and Sara is so lucky to have you as parents!Lots more prayers to you.
Posted Jan 31, 2011 10:22am
by Mary Mallon
Prayers to you and Sara, may she wake up soon to hear your voice telling her how much you love her and what a strong little girl she is.
Posted Jan 31, 2011 10:11am
by katie consoletti
I continue to pray for you all!
Posted Jan 31, 2011 10:05am
by Holli Gutierrez
Still praying for a miracle and praying that you will be comforted and guided in your decisions. We love you.
Posted Jan 31, 2011 9:56am
by Lisa Wyson
Near Thanksgiving Ms Shirley asked Sara what she was thankful for and she jumped up a little and said "Jesus!"
I just remembered that. She was so happy and she exclaimed it with her whole body.