I was asked to give my faith story at our Women's Retreat last weekend. I was terrified, in fact, when I agreed to it, I just said yes and never really thought about it. Then as time grew closer, I started freaking out. I knew God wanted me to do this, so one night I set down and prayed and this is what came of it. This is only part of my faith story; I could go on and on, but for the retreat this is what God wanted me to share.
I never realized how good this was for me to sit down and write it all out. I will eventually sit down and write more one day, but for now this is what God wanted me to share...
Hebrews 11:1
"Faith is being sure of what we hope for and certain of what we do not see"
My testimony is a bit different, I did not live life and then come to know God. I grew up in a Christian home, where God and Jesus were the foundation of our family. I was blessed to start coming to First Presbyterian Church in 8th grade. I worked with the youth when I was in high school. I went to Belize on spring break mission trips, I saw God's hand work in the most amazing places. I felt I knew Christ and I thought my faith was solid. Boy was I in for a surprise...
In the spring of 2009, my world was flipped upside down, inside out, and twisted in the worst ways possible.
On April 1, 2009, my father passed away. I never thought I could survive my father's death. I was a "Daddy's Girl" to say the least. I was also 24 weeks pregnant with my daughter, Natalie. I did not know how I could get through this, but I knew God had a plan.
I remember on the night of April 23rd, I was lying in bed and I thought to myself, "life can not get any worse than it is right now," words I will never say again. The next morning, I went in for what I thought was a routine sonogram. See, my kids have always been difficult during sonograms, so I really did not think anything about it. However, we came out of the sonogram 2 1/2 hours later with our world shattered. I was terrified. I do not even remember what all the doctor told me that day except she thought my daughter had hypo plastic right heart syndrome. We were going to have to give birth in Dallas, Houston, Boston, or LA; and my daughter would not live a normal life span. What is a normal life span, I kept thinking.
But wait it gets better; we would have to set up an appointment with the pediatric cardiologist to confirm her condition in a few days. A few days, really? You are sending me home with this? I was scared, terrified, and confused. What was God's plan anyway? This could not be happening to me. Had I not been through enough already?
Larry did not want me to talk about it. He did not want me to say anything to anyone until the cardiologist confirmed her condition. Men and women deal with things differently. I knew that, but I was not prepared for the hardship this all placed on my marriage. I was always under the impression that when you went through a difficult situation or tragedy within a marriage, it would only strengthen your marriage. But what I found was that Satan saw an opportunity and went after it full on.
I knew we were handling things differently, but I was not sure Larry was dealing with it at all. I mean, he told his parents one night at 10:30 p.m. over a 5 minute conversation and then hung up. I knew I was going to be making a call to his mom the next day to calm her down, but honestly, I needed someone to calm me down. I felt alone and scared. My dad was always the voice of reason for me and now he was not there. God had broken me and taken me down to my knees. All I could do was trust in his plan and know that if that meant taking my daughter to Heaven to be with him; I would fine a way to deal with it. I was not sure how, but I was learning I was stronger than I thought I could ever be.
The next few days went really fast. We had out meeting with the pediatric cardiologist in Amarillo who confirmed Natalie's condition; tricuspid atresia. Basically, Natalie had very under-developed lower right heart chamber; almost non-existent.
We chose Dallas only because it was closer to home and to Larry's family in Texarkana. I mean how do you even begin to research a good pediatric cardiothoracic surgeon? I chose to give birth at Baylor, only because I knew they took my insurance. I was also given a list of doctors, we would be using; a fetal specialist, a fetal cardiologist, an ob, and the surgeon. I had never heard of any of these people and I was to trust them with my life and my daughters? I kept wondering what God was doing.
We went to Dallas for our first appointment within a week or two of finding out about Natalie's condition. I had a small amount of hope that something would change and she would be fine. However, that was not the case. Natalie's condition was confirmed, but they also spent a lot of time explaining everything to us from the surgeries she would need within the first few years of life to what some of her limitations would be throughout life. Nothing had changed, but I understood and had a sense of peace that God put the right people in our path.
Now I have been labeled a little OCD in ways and was a planner; notice I said was. I like to have control of a situation, especially when it came to me and my unborn child. I now do not plan. God has taught me that time and time again that He is in control and I really do not want another lesson.
I had everything planned out, I was going to Dallas for the day and then, I would be home for another 2 weeks or so. I could pack, get my house organized and most importantly, figure out a plan for my 2 year old son Carter. I got up early on June 16th to leave for Dallas for what I thought was a day trip, and did not come home for 8 months. I did not have a phone charger, a toothbrush; I did not even get to kiss my son goodbye. Planning? What was God doing?
I had an incompetent cervix and the doctor was shocked they even let me on the plane. I looked at him and said, "What do you really think the TSA is going to check my cervix? I am pretty sure that is out of their line of expertise." It took me 30 minutes, and some lack of reasoning on my part, to understand he was not letting me go home. I was going straight down the street to Baylor, where I stayed for 2 weeks on a floor with all women trying to stay pregnant.
A few days before July 4th, I got the okay to leave Baylor and move into a temporary apartment by Children's Medical Center. Larry drove down with Carter and it was the first time I saw my husband and son in 2 weeks.
On the morning of July 16th, I woke up to my water breaking I was scheduled for a c-section the following week, so Larry was in Amarillo. Thankfully, my mom was still in town, because she was scheduled on a noon flight back to Amarillo that day. I remember thinking as I gathered my stuff, "here we go God;, please watch over us both."
Natalie was born and by a miracle, did not have to have surgery the first week. In fact, she was the small percentage that was able to hold off. The surgeon told me this never happens, but it happened to Natalie.
On August 24th, 2009, Natalie had her first open heart surgery. I had looked at a few blogs, but a blog can not prepare you for your child going through open heart surgery. She was so young, she did not even cry when they took her from my arms back through the operating doors. I remember tearing up and inside I was dying. I truly believed God let my dad go to Heaven early, so that when Natalie passed away, it would be easier for me to deal with in some weird way.
The surgery lasted 6 to 8 hours, they updated us every hour, and so far things were looking great. Then, our cardiologist came out and told us, Natalie was not tolerating the shunt they were trying to put in. He said if we leave it in she will not make it through the night, but if they take it out, then we will have to look at other options. I just stood there with this look like, "Why are you telling me this, take the damn thing out." The doctor just stood there starring at Larry and I for what felt like forever; finally I asked if there was more. He said, "No, I am just waiting for some emotional response of sorts." I again just stood there motionless, but inside I was screaming, "You did not come out here and tell me my daughter was dead; you came out and told me we needed to look at other options, so why are you looking at me like that? Go in there and take the shunt out." God shielded us for the first time on our journey. He protected our hearts from what, I can not image.
I know I will not be able to give this feeling the experience it deserves, but I will try. After the doctors sewed Natalie up, they brought her down a long hallway into the CVICU (cardiovascular intensive care unit). Larry and I got to stand there and see her before the doctors and nurses took her all the way into CVICU. This is the case after all heart surgeries. Then, the doctors and nurses take her on into CVICU and we have to wait another hour or two before we get to go into her room. This is so the can hook her up to the machines and get her situated in her room.
As I stood in the hallway waiting for my daughter to come around the corner, I had all these emotions. I was relieved she was alive; I did not know God's plan, but I was so happy yet fearful for the unknown future.
Then the door opened and there the nurses bringing my daughter to me was like a Heavenly Host. There was a circle of light surrounding the nurses and doctors walking along side Natalie's bed. I had never felt more like angels were walking beside her, caring for her, holding her, loving her, and healing her. As I looked down at my daughter I was brought to tears; she was just lying there lifeless almost with tubes everywhere and a huge incision on her chest.
Shortly after getting Natalie in her room and settled, we got a call from the front desk; there was a minister there to see us. I looked at Larry and said, "I am done." I could not deal with another minister, not today. I had spoken with over 6 different hospital ministers between Baylor and Children's and today was not the day I was going to deal with it. Larry said, "I've got this one, it is my turn." He put on his boxing gloves and headed out to meet this minister, but when he walked into the lobby, what he got was something way different. Standing in front of Larry was 2 guys about our age in tshirts and flip flops; all of Larry's guard fell down right at that moment.
See, Larry's mom had sent out an email asking for prayers, not stating anything specific, but she knew something was not right because I had not called her in over an hour. A women on the email knew this minister standing in front of Larry; Clayton. She had called Clayton and told him she did not know what was all going on, but that he needed to get to Children's right now. Clayton dropped everything and grabbed another guy on his staff and headed out. Clayton and his church, First Baptist of Coppell, embraced us during out time in Dallas. They were a huge blessing at the time. We needed God's love and word so desperately, and they came at the right time and wrapped their arms around us holding us tight.
The next few weeks were a blur. We were trying to find a new living situation in Dallas and I knew that after an entire summer without my son, I needed him there with me. Poor kid at been bounced around from family member to family member with no real stability all summer. I missed him so bad and did not know how we were going to do it, but knew we would figure it out. God provided for us a home and a school for Carter all within a matter of days.
Natalie, however was a stressful situation to say the least. Things were changing day by day, minute by minute, and sometimes even second by second. Once minute, she was going to have an MRI, then the next minute not. Then she was going to have a heart cath, then not. Then, she was going to have surgery, and then at 1:30am, they decided she didn't need it. One day we had 3 options and the next, we only had one...a heart transplant.
Once again, I was scared to death, the word transplant was beyond anything I wanted to hear. A heart transplant had positives, but it had a lot of negatives too. It is basically trading one group of problems for another set of problems. Sure transplant would give Natalie a chance to live a pretty normal life, but a heart in a child this young would not last forever. I went through what felt like the most important and intense interview of my life. When you need a transplant, you do not just get on the list. There were tests Natalie had to go through, such as brain function, liver and kidney function, etc. I had to meet with 2 child life specialists, 2 therapists, and the entire transplant team. They gave me a binder of all the medications Natalie would need following transplant and their side effects; such as leukemia. It was an endless few days. Then, the day came where Natalie was officially placed on the list.
I remember blogging that night...
"I am not going to lie, I am terrified. I have to keep telling myself at least we have an option and we are blessed with the amount of support we have. I know God has a plan for her and we will get through this part. We still have a long road with transplant that will continue the rest of her life. It is so hard for me to ask you all to pray for a heart, because for a heart to become available, someone has to lose a loved one...a baby. I feel selfish asking God for that. I pray that by a miracle everything works out somehow and she does not have to have a transplant..."
I posted that on September 19th and on September 21st, we got a call at 5am that Natalie's oxygen had dropped in the 20s and they were having a horrible time raising it. Natalie would have these periods, but she always recovered. I asked the nurse if they had stopped her feeding and she said yes. I knew what that meant......surgery. I got up and started getting dressed only to get a call a few minutes later saying Natalie would be going into surgery at 7:30am.
No, they did not have a heart for her, but they had to do something and they were going to re-attempt the first surgery again. The surgery that did not work the first time!
Larry and I got to the hospital around 6:30am. As we walking in and back to Natalie's room, all the staff just kind of looked at us with this solemn expression, I did not even notice until later. The nurse asked me if I wanted to hold her. I remember thinking this is weird because I am pretty sure a few weeks ago they told me you can not hold your child after they are intubated, but I had not gotten to hold her in about 3 weeks so I was all for it.
The next 30 minutes went by like 5, but there was this peace during that time. There was so much commotion going on, it was shift change for the staff, so the night shift was coming in saying they were praying for us and the day shift was coming in shocked that Natalie was about to have surgery, saying they were praying for us too. Even our pediatric cardiologist came in, who normally does not make rounds in the CVICU. I remember thinking this is so weird because he just stood there. They told us the chance of Natalie's survival was not great , but they were going to do all they could. See before Natalie they had never seen the first surgery, the BT Shunt, not work on a child. My daughter is not like most and likes to set the bar high I have decided.
Natalie's surgery only lasted 4 hours, compared to the previous surgery of 8hours! Larry actually answered the call when they called back and said she was doing better than they could have ever hoped for. Hoped for, I thought, that is a strange comment.
It was not until later that afternoon that the light came on in my head. I pretty much ran back to Natalie's room and looked at Larry and said, "I do not think anyone thought Natalie would survive." We started to thinking back on the morning, the people's faces, their actions and words, event he nurse who called Larry to let him know Natalie was doing better than they could have "hoped" for. The surgeon's face when he came to talk to us after the surgery and people's comments that day as I walked down the hall saying how much a fighter Natalie was said it all.
I dropped to my knees right then. God blessed us more than we could have ever imagined right then and their that day. He answered my prayers!
Now life with a congenital heart defect child is never over. Natalie since has had another open heart surgery and we are currently monitoring her for another surgery within the next year or so. You can not put a time frame on this. It is up to the child and how they are doing.
I think the hardest part is that I cannot protect her. If I could take the pain she has endured and will have to endure, I would. As a parent, and especially a mother, we want to protect our children from being hurt physically and emotionally.
I also know she will have to have different surgeries throughout the rest of her life, and more than likely we will face transplant again. This time it will be our only option, but for now we will just enjoy the day God gave us.
Jeremiah 29:11 says, "For the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future." I do not know the future for Natalie, but God does. She will not be able to do what other kids are doing and I do not know how long God will bless me with her here on earth. But I do know she is a blessing and has already touched many lives.
I read the following devotional back in December 2009 from Beth Moore...
"Perhaps the most the profound miracle is living through something we thought would kill us"
I pray that out of your glorious riches you will strengthen me with power thought Your Spirit in my inner being, so that Christ may dwell in my heart through faith.
"An I pray that, being rooted and established in love, may have power; together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge that I may be filled to the measure of all the fullness of God"
Ephesians 3:16-19
There is one verse that always stuck out to me over and over again through all we have gone through...
1 Corinthians 13:7
"Love bears all things, believes all things, hopes all things and endures all things"
My faith story is not over, in fact, I believe it has just begun. I have had to endure more in the past 3 years, then I thought was possible, but I know God has my hand and is walking me through life. I do not know the purpose of all this, but God has chosen me to be the mother of this special little girl and
I will not let him down. I may fail at times and I may have moments. There are times when I hear a song on the radio and have to pull my car over because I am crying so hard. But God will not give us any more than we can bear. He must think highly of me, because I never imagined I could do this and I can't without Him and I will not even begin to try.
Everyone will go through a trail in life. James 1:2-3 says, "Consider it pure joy my brothers, whenever you face trials of many kinds, because you know the test of your faith develops perseverance." Notice it did not say, "if you have trials, but when you face trials." I pray your trials are not painful, but know every trial is just as important as the next and with God by our side leading us, we can walk through fire. Isaiah 41:10 says, "Do not fear, for I am with you; I will uphold you with my righteous right hand."
I want to encourage each of you to look at your life, check your faith button, and walk hand in hand each day with God by your side.
