Thursday, March 10, 2011

VALENTINE'S DAY - A Bitter/Sweet Occassion

by Shelley Boice Ramirez on Friday, February 11, 2011 at 5:17pm
For the longest time, I've wanted to write down my thoughts about this special holiday and why I love it so much, and at other times, why I dread it. For the past 13 years, when this day rolls around, I feel both emotions at the same time, but at the end of the day, knowing that this day brought much sorrow to my heart, it also warms my heart because of what I have waiting for me, someday.
I like to think of McKenna being held by Jesus, shortly before she was born, October 21, 1997. And I like to think of him saying to her, "You have a hard road ahead, although it will be short, but I know you can do it, and I know your parents will love you all the more for it. I'll be waiting for you when you return."
It wasn't but a few seconds after McKenna was born, in Ogden, UT, that doctors knew something was wrong. She wasn't breathing the way a new born should. After about 45 minutes in the room, they let me hold her for, literally, a minute, and John went with her to the NICU, where it was determined several hours later that she needed to be helped breathing by a ventilator, indefinitely, until it was determined what was wrong.
At 3 weeks of age, a diagnosis was finally made, she had an extremely rare lung disease: Surfactant Protein B Deficiency, she being the 17th person in the world diagnosed with it. It was then that we decided to go ahead and have her "blessing" where she was given "a name and a blessing" on the records of our church, and throughout her life. The only cure at that time (and still, today) was a double lung transplant, which would happen in St. Louis, MO at St. Louis Children's Hospital.
The night before we all flew out to St. Louis, December 6th, was the first time since she was born, that we could hold her. It was wonderful, to be able to actually feel her weight, and see a profile of her that I wasn't used to. She was absolutely beautiful, to me, and I was thrilled for the upcoming event that I KNEW would be life changing. But, little did I really know, what was about to happen.
Upon arriving to St. Louis, it was discovered that one of McKenna's lungs had "popped" (as if she didn't have problems already with her lungs) and she was deteriorating. The only option was to put her on a heart/lung machine, to give her body a rest. After some thought and prayer about this, because it could be life threatening, we decided to allow the doctors to do this. She was on this machine for a week (in photo above), and it was definitely a scary time for us. I had thought to myself, 'We've come all this way, not for this, please hang on and get through this.' Fortunately, she survived the procedure, and it did exactly what her little body needed, to rest and recover.
Christmas came, and it came with more excitement too. We got a phone call during the night, on Christmas Eve, that McKenna had coded. We didn't know what that meant, but were at the hospital 5 minutes later. (Thank goodness for the Ronald McDonald house where we were, that was just a few blocks away). They had been trying to revive her for about 1/2 hour. John called our bishop, who came with another friend, and they gave her a blessing of healing. Her heart started beating, and after some brain scans, it was determined, that even after an hour of CPR, there was no brain damage and she was "okay".
Now, when you or your loved one is on a donor waiting list, you can imagine how hard it would be to pray for a donor. Although we were going through a trying time, pleading with the Lord to allow our baby to live, someone, on the other end, is having to deal with saying good bye to THEIR loved one, and making the heart wrenching decision to donate their organs. My prayers were filled with pleading to God, that someone, somewhere, would have the desire to donate the organs of their passing infant or toddler, and at the same time to pray for that family that they will be blessed with peace and comfort. I can honestly say the night John and I prayed together before we went to bed, and as I had my own personal prayer, I had never, NEVER, in my life prayed so hard as I did that night, that this miracle would occur. We went to bed, and at 4 a.m. January 7th, 1998, we received the phone call we had come to St. Louis to receive. There had been a donor, and surgery would be scheduled within hours.
McKenna's 6 hour transplant of both lungs went well, and her old lungs, as shown above, were so sick, that after the doctor described to us what they should look like, it was obvious that this needed to happen.
After her surgery, we felt that our lives were on the right track, we would be bringing her home in a few months, life would be good. It would challenging to raise a child having had a double lung transplant, but it would be worth all the time, effort and emotions that were spent to get this far. We were "feeling" our trial and were excited to see the blessings that would come.
McKenna was doing wonderfully, and scoring an "A" with all the doctors on her progress. John and I couldn't wait to hold her again, as we had only been able to hold her one time since she was born.
McKenna was simply beautiful. It was amazing to see her return to "normal" after her new lungs, and to be able to hold her each day, and to see her progress, and know that any day, she would get that darn breathing tube out of her, as she was nearly breathing on her own at room air. We loved seeing her eyes open more often, looking directly at John or I, and acting as if she really did know us, really did understand who we were. I look back on it now and assume that she was thinking, "Mom, Dad, I'm not going to be here much longer, and you need to prepare yourself for a life without me on this earth. My job was to come receive my body, give you joy while I was here on the earth for this brief time, and to teach you many things about love, sacrifice, faith, hope and so many things you'll learn as the months and years go by."
I truly believe, that all those times she would look into our eyes, she was saying those things. I believe she understood why she came to our family, and I know she understood why she had to go through this trail as well. Little newborns, , who are so close to the veil, I believe have an understanding and knowledge, that we adults do not have.
McKenna took a turn for the worse, about a week or so before Valentine's Day. She acquired a fungal yeast infection that spread throughout her blood stream. About a week before she passed away, both John and I had a feeling that we would not be taking her back to Utah with us, but neither one of us wanted to express that to each other.
Some friends from church encouraged us to attend a Valentine's dinner and dance, which would be on the 13th. We went, reluctantly, but while we were there, neither one of us wanted to be there, we just wanted to be with McKenna who was so sick again. We left early, went back to the hospital, spent some time with her, and said our nightly prayer with her, holding her hands. As we said, "Amen", her heart stopped. She had coded, once again, and we knew the end was near.
Morning came, it was Valentine's Day, and we met with the doctors, after they had revived her and kept her alive on meds that are only meant for short periods of time. Our bishop came to be with us. I can remember being in this large conference room, at an oval table with many doctors and other people. Someone asked if we wanted to have her baptized. We said no. We are not Catholic, and John said, "When was the last time you saw a baby sin?" The doctors told us they had done all they could, but I still was not willing to let her go yet, even though, deep down, I knew I had to, but I was looking for something. I told them that I needed an answer from McKenna. I needed something FROM her telling me it was okay to let her go. I suppose I wanted permission, I wanted her little spirit to tell my spirit that as her mother, I could let her return to her Heavenly Father. I cannot remember what was said by the doctors after that, but we left and spent the rest of our time with McKenna. It was later that day, that I got my answer. When they had suctioned her lungs, they had brought up blood. There was something about seeing that, that told me, she needs to go. I knew right then and there, that she had suffered enough, that it was time for her to "go home".
They let us hold her while they turned down the oxygen, and they did it slowly, and they promised us that she was not in any pain, which, to this day, I truly believe. We let Valentine's Day pass, and it was at 2:30 a.m. on February 15th, 1998, that our dear sweet McKenna, slipped back through the veil to be with Jesus and Heavenly Father, and all her relatives that had gone on before, to greet her.
I like to think of this, as how McKenna Claire, was greeted by Jesus. What a wonderful event it must have been. What a brave little girl she was. More courage than I will have ever had.
So Valentine's Day, a day to remember the one's we love. A day to celebrate with the one's we love. A day to look forward to a time to be with the one's we love, who are no longer here. I LOVE VALENTINE'S DAY. What better holiday could there have been, for McKenna to have finished her life here on earth. Yes, I get sad, mostly because I think of what I have missed all these years without her, wondering what she would look like as a teenager, wondering if she would have my feisty temperment, or John's easy goingness. But mostly, I just wonder what it is exactly, she's doing right now. Is she just as excited to see John and I, as we are to see her one day? I hope so.
As I think about these baker's dozen years that have gone by, I can't help but think of the tremendous blessings we have been given, especially being told we had a 25% chance of this happening to each pregnancy. And here we are, 4 children later.
I didn't know, that in many more Valentine's Days to come, that I would be able to bring more children into the world, and share with them in this wonderful Holiday. I didn't realize, that the Valentine's Days that would follow, would help me to focus on what this holiday really ought to be about. Do you love someone, anyone? Share it, tell them, show them. Is there someone you know of that needs a "valentine" not only on this day, but every day? Just as much as there are those who know they are loved, there are those who don't feel loved.
I can't think of a better day, for McKenna to have left this world, and enter a better one. Of all the days of the year, it was Valentine's Day. It makes so much sense to me now. She showed us, her parents, and so many others, how much she loved us, and how much she loved God, to be willing to come down here and endure what she did. And God showed us how much he loved us, by allowing us to experience this trial and blessing. Now all I need to do, is show THEM how much I love them, by the life I live.
It was shortly after this picture was taken, that McKenna left this life, and ours had just begun.

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