A Mighty Battle

Yesterday was rough. I’m not really sure why but it just was. We had family in town until yesterday morning and it was non stop activity for several days. Maybe I was exhausted, maybe I didn’t feel good, or maybe I’m just a basket case. Who knows?? What I do know however, is that I was a mess yesterday. I couldn’t help but keep reminding myself of all the things that I am not good at. I’m a terrible cook. I am NOT a super organized, volunteer oriented PTA mom. My house is a wreck most of the time. I’m not great at keeping up with our finances. I put my husband at the bottom of the priority totem pole and now I feel like I can’t grow healthy babies. I couldn’t help but think about all of the things that I should have done differently this pregnancy. Did I drink too much caffeine? Did I take the wrong kind of medication? Should I have eaten better? Talk about a Mack truck of emotion…and that particular truck hit me several times yesterday without warning. Like I said, it was rough. Yesterday was just a “hang on and get through the day in one piece” kind of day. Today I woke up feeling a little better. We have some very dear friends coming over to watch the Clemson game (Go Tigers!) and I had a lot of things on my to-do list to keep me occupied but something still just felt off. I feel melancholy and sad. Disconnected.

 I know that I have mentioned in previous posts about how disconnected I feel with Christ. I just feel alone. A couple of weeks ago one of my precious neighbors brought over a copy of “Jesus Calling.” What an amazing gift during this period in our lives! A daily reminder that He is still there and today  I needed that. I opened my devotion this morning and this is what I found:

“There is a might battle going on for control of your mind. Heaven and earth intersect in your mind; the tugs of both spheres influence your thinking.”

It went on to talk about how there is a constant battle going on for your mind and how a mind that is centered on the Spirit is filled with life and peace and how a mind that is centered on worry and worldly things weighs your down and will “block awareness of My presence.” Worry actually blocks the presence of God.  To worry is to not trust in the Lord. To worry is to sin. The mind of sinful man is death, but the mind controlled by the Spirit is life and peace; Romans 8:6.

There was the disconnection. That is where I was severing the presence of God from my life. I was letting the worry of the world win the battle for my mind. I would love to say that I am not going to worry anymore. I am not going to worry about the health of baby girl. I am not going to worry about money and finances. I am not going to worry about my job. Right… I think it is safe to say that the war wages on. The battle for my mind will not quit and worry will try to conquer again but ultimately Christ prevails and I just have to continue to seek Him. You might have to remind me of that every now and then…

My heart says of you, “Seek his face!”

Your face, Lord, I will seek.

Psalm 27:8

"Analysis Paralysis"

Last week I had some really great things to blog about. For starters, the amount of compassion and prayers our family has felt over the past several weeks cannot be described. We feel so blessed to have so many people that love us! We are feeling your prayers for sure. After I shared our story I almost immediately felt at peace. As a mom I don’t think the worry ever goes away completely but I began to be able to focus on what we have right now. Right now we have four beautiful children who are growing and thriving. This will change for baby girl after she gets here but for right now she is safe and she is thriving and she lets me know…a lot! The same day as our initial abnormal scan both her and brother decided it was time to start moving. I think they just knew that I needed to know that they were okay!

Another answered prayer were the results of the amniocentesis which came back NEGATIVE nor have I had any complications. We are overjoyed by this news! We now feel confident moving forward that the heart will be the issue and not just one of many.

Today, however, I am finding it a little bit more difficult to write. We had our appointment with the cardiologist on Tuesday and with all of the answered prayers we have witnessed lately I whole heartedly expected for them to tell me that she was healed and would be born happy and healthy. That didn’t happen…. Instead we got news worse that I think either of us was anticipating. Simply put, baby girl’s heart is just a mess. Not only is her heart flipped but her ventricles are flipped, the left ventricle is way smaller than the right, and all of her “plumbing“ is not going into the right places. There is also a massive hole in her heart and one of her valves is sitting in that hole which makes it really difficult to patch that hole up. The doctor said that unfortunately with her combination of defects there is no right answer on how to fix it. She said more than likely after she is born the first couple of weeks will be testing and discussion on what the best way to fix it is. She said to expect at least 4-6weeks in the ICU’s after she is born then multiple surgeries and smaller procedures over several years after that.

What does this mean for her? What will her life look like? The doctor told us to expect her to not feed or grow as well, to expect developmental delays, and that her heart will never function like a normal heart. Our daughter will never be an athlete. She will always be restricted in her activities. The sky is not the limit for her…her heart is.

I wish that I had some profound, eloquent words for how I was processing this but I don’t. At this moment I am just taking it one minute at a time. If I think about the future I become overwhelmed. A nurse I worked with called this “analysis paralysis.”  As a mom I already feel spread so thin. Loving and caring for one child through all of this seems impossible enough. How do I love and care for her without neglecting my other children in the process? Ellie is so sensitive and Jack just needs his momma so much. Not to mention the demands baby boy will have just being a normal healthy newborn. Throw in a full-time job and that sounds like a one way ticket to the nut house! Right now I just have to trust in God’s word. I have to trust that tomorrow will be taken care of and all I have to face right now is today. “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it’s own.” Matthew 6:34.  And today…today I have four children who are thriving and growing, two birthdays to plan, and a pile of laundry a mile wide! Please keep the prayers coming!

Our Sweet Baby Girl

My first foray into blogging was kind of a bust. It was supposed to be a chronicle of my journey as a follower of Christ and actually turned into a perfect illustration of my life. Great intentions that succumb to a hectic life, busy family, and not enough time. However, I would like to take another stab at this. Michael and I are expecting a set of boy/girl twins come December and last week we found out that our baby girl is sick. She has what the doctors have explained is a pretty severe heart defect the full extent to which they can’t even see just yet. So I would like to give this blogging thing another shot for a couple of reasons. One being to keep our family and friends updated as to what is going on. These next few months promise to be trying and filled with lots of information and changes and this just seems to be the easiest way to keep everybody up on what’s going on. Second of all, I feel like it is going to be very easy for me to get lost and lose faith in all of this. I need to have something that I can look back at so that I can remind myself that God is still here. He still loves us and He is still working in all of this. In the darkness I may just need a black and white reminder that He goes before us and works out the details. And while he has made no promises to heal our sweet child He does promise to still be here. Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; He will never leave you nor forsake you. Deuteronomy 3:16.

This past Thursday we went in for our routine 20 week anatomy scan. The plan being that we would get a good look at our two perfect babies and then discuss what our prenatal care would look like in the second half of the pregnancy. We had our ultrasound first and the tech started with baby girl, twin A. She took a few quick measurements which were perfect and moved on to baby boy, twin B. When she got to his heart she took a good fifteen minutes thoroughly examining it and labeling each part. Why didn’t she do this for baby girl? Why is she taking so long on his heart? What is wrong with it? She finished up with him and my thoughts were still racing. She looked at me and said, “ I need to be honest and tell you that I saved baby girl’s heart for last because something is not right and it is going to take me a little but longer to sort out exactly what is going on.” I asked her if it was bad and that’s when she said it. “No heart defect is ever good.” Heart defect. There it was. The world stopped spinning. Nursery planning and baby registries turned into what ifs. The life we planned faded away and we were now forced into a new reality…our baby girl is sick. We were basically told that her heart is completely flip-flopped but what that means and the extent of the damage we wont know until we have a fetal echo and meet with our team of pediatric cardiologists at MUSC. The doctor came in and explained what they saw and that our care would be transferred to a high-risk OB at MUSC. All the while the same question rang in my head, louder and louder. “Is she going to die?” Can I ask this? Should I ask this? Do I even want to know the answer? The answer terrified me but the what if’s and uncertainty seemed worse. As we were getting ready to leave it just came out, the dreaded question almost involuntarily spilled out of my mouth and immediately my heart stopped as I waited for her response. “We are hopeful. Her other organs look good and she appears healthy right now. We are more than likely looking at something that she will need surgery for after she is born.” There it was. Hope. 

As we drove home, Michael and I bounced back and forth between a million different scenarios and emotions. We didn’t even really know what to think. He held my hand while I sobbed. I rationalized with him as he thought out loud. We were sorting out this new reality as best as we could still knowing that the unknowns far outweighed the knowns. We were told at the office that MUSC would be calling us that afternoon and to expect to be seen the following Tuesday. We went home and Michael went back to work and I went to waiting…..and googling. Good grief was there googling. I know, I know. You are not supposed to do that There is nothing worse than mixing a worried parent and google but I could not help myself! (Honestly, what parent could?) The afternoon came and went and we had yet to hear from MUSC but our OB said that it might be as late as the next morning so I was agitated but not surprised. After 5pm my phone rings and it is our OB. She goes on to say that the pediatric cardiologist is beyond booked so they would not be able to see us that Tuesday so the in-office specialist would see us on Monday and that we would see the pediatric cardiologist the following week. Then she said that they would also do an amniocentesis on Monday to rule out any chromosome defect. I was so confused. What chromosome defect? It is her heart not her chromosomes! Dr. Devine proceeds to tell me that when you have a structural defect like hers you have to begin thinking that the cause may be a chromosome abnormality and you need to rule out things like Down’s and Trisomy 18 before you start considering using heroic, life-saving measures. Heroic, life-saving measures.  Once again the world stopped spinning and after we hung up the phone I began to really digest what she had said. What I heard was they wanted to do an amniocentesis to figure out if my child was worth saving. This is the child that I feel living inside me. The child for whom we have planned a life. The child that I dreamed of seeing being a sister and best friend to Ellie, our oldest daughter. The child that I have pictured walking down the aisle and holding a baby of her own one day. Our little girl. Was this child worth saving? Amniocentesis is not without risk for BOTH babies and that is the only answer you’ve got as to why we should do it?! Absolutely not. I would absolutely not put both babies at risk  just so that don’t have to “waste” your medical resources. I know that is not what she meant but I just could not come up with any scenario in my head that made sense for us to do it. We were going to fight for baby girl no matter what. We went to our doctors appointment having decided that we would not do the amnio unless she could give us a better reason. A reason to do it that would medically benefit one or both babies. When we walked in to our appointment where we met with the ultrasound tech and the specialist from that office. We spoke with the doctor in depth about the amnio and what that meant. She basically said that her heart defect did not follow any pattern and that gave her great concern that it might be because it was the result of a chromosomal abnormality. She pushed for the amnio for a variety of reasons all of which still just weren’t “good enough.” I refuse to put both of the babies in jeopardy to quench either my or her thirst for information. Then she flew into possible scenarios. She mentioned that if say baby girl began to decompensate rapidly at 30 weeks or so we would need all of the information we could get when making a decision about whether or not to deliver both babies early. Boys tend to not do as well as girls when born prematurely and that could set him up for a lifetime of medical issues if delivered too soon. It was too much. The complexity of the issue, the idea that I could not make a decision without affecting both children proved to be too much to bear and I broke. I broke under the sheer gravity of the situation and the barrage of medical personnel watched as a melted in a puddle on the floor. No matter what decision I make I won’t know if it was the right or wrong one until something catastrophic happened. I know that we said that we would not have the amnio unless there was a medical benefit to one or both babies and she had shown us that there was but now it came down to trusting the decision that we made not knowing the outcome. It turned back into what if’s. We held on to the decision and rationale that we had prior to the appointment and decided to have the amnio. It was uncomfortable and scary and I still don’t know if I made the right decision. At this moment I live in constant fear that something will go wrong. Either my water will break or I will have contracted some type of infection from the procedure. All we have is hope and faith. Faith. I would like to say that after the amnio the doctor gave us good news and reassurance but all she gave us was a plethora of information that I could have gone a lifetime without. She began to ask us about termination. Termination. The thought angered me in a way that I have not ever felt before. Are you not supposed to save lives? Are you not supposed to be on my team? Are you not supposed to be fighting for my little girl? We left the appointment more heart broken than before as we just go home and wait. Wait for our appointment with MUSC. Wait for answers. Wait and see whether or not there will be any complications from the amnio. Wait. The next day we received a phone call from the fetal cardiology coordinator about our appointment. She said that our appointment was set for September 3rd and that we would meet with a team of cardiologists and OB’s and that they would do a fetal echo to determine exactly what we were working with as far as her heart was concerned. She told me that they were going to wait until then to see me because the amnio results should be back in. She then said something that while I’m sure insignificant to her restored my faith in the medical community. She said that the amnio results did not matter to them in regards to medical management for us. She said they are going to do whatever they can for baby girl regardless of the result. Hope.

So now we go back to waiting. Some days/moments are more difficult than others. I would like to say that this has brought renewed strength and intimacy with Christ but that comes and goes too. I am angry and heartbroken. I am terrified at the idea of a life without her. I have gone from being terrified about being a mother of four to being terrified that maybe I won’t get to be and that makes me angry. Michael asked on Saturday what time I wanted to go to church on Sunday and before I knew it I had responded with, “I don’t know. God is not really my friend right now.” Did I mean it? Maybe. Did it sting coming out? Yes! Even acknowledging that I was angry with God hurt. I was even angry that he let me be angry with Him. I wanted to feel Him. I wanted to feel His comforting arms. I wanted to feel relief from this weight that I carried and instead I felt nothing. I felt and sometimes still feel alone. It is days like this where I have to hang on to what I know with everything I have because what I feel can only lead to isolation. The heart is deceitful above all things and beyond cure. Who can understand it? Jeremiah 17:9. This is what I know. I know the truths of God’s word. I know that all things happen for His greater purpose. I know he has promised never to forsake me. I know that He has promised that out of pain comes grace. I know that when I lack the strength to even take the next breath that He breathes for me.  I continue to pray that even in the pain, when it is too much for my heart to bear, that I am able to hold on to that truth.  So while we wait…

But those who hope in the Lord

will renew their strength.

They will soar on wings like eagles; 

they will run and not grow weary, 

they will walk and not be faint.

Isaiah 40:31

Here Goes Nothing...First Attempt at a Blog Post

I have been really struggling with a sense of direction lately. I feel so called to adoption and to medical missions and have been struggling immensely with the desire to go back to Uganda this summer. I really felt like God was calling me in so many different directions and yet telling me to wait but VERY CLEARLY hearing his promise that I will be fulfilled in his time. I don’t do “wait and see” very well and I definitely don’t do well without clear direction and purpose. With that being said, you would have thought that Michael telling me that he didn’t want to go on the mission trip this summer would have been a clear enough answer for me that it was not meant to be. But alas, that was not the answer I was looking for so I grew angry. Angry at Michael. Angry at God. What give me a heart for Uganda without the intentions of sending me back? Why give me a heart for orphans but not give Michael that same passion? Why? Especially now that our family has been so blessed financially and we have the means to do all the things that God has laid on my heart I find myself questioning God and His plan and timing. I have grown very distant. If God is not going to fulfill me in the things that I want to do then I am just going to go about my life as usual. That didn’t last long. God was tapping, or more so beating, on my heart today. I decided it was time to get back into the word and the routine of daily quiet time. I prayed that he would give me a good clear answer as to what he wanted me to study and without any real sense of where he was going to lead me I landed on the Village Church app on my phone and found this. “Living in the Gap” a sermon by Afshin Ziafat. Sounds fitting… Opening statements:
“The gap is where God has given us an incredible promise, and incredible call, He’s called you to Himself, He’s given you this amazing promise and the promise has not yet completely fulfilled. It hasn’t been actualized, and so you’re living in this gap between the incredible promise and the fulfillment of it….
So the question is: How do you live? And for most of us, most of our life is in that gap because the ultimate fulfillment of that promise is when we spend eternity with God. And so we have this gap to deal with.”
As if the mere fact that he picked this message specifically for me in this specific moment wasn’t enough, he brought me to my knees. Over and over and over again. Here are some amazing things that I picked up while listening to this sermon.

• The story of God’s promise to Abram in Genesis is the illustration of what its like to live in the gap. God makes a promise to Abram. Abram becomes inpatient when he does not see the fruit of that promise. God remains steadfast in teaching Abram that the reward is not the promise, although it will be carried out, the reward is God himself. 
• A lot of times we feel like God is not working the way we want Him to or on our schedule so we put OUR hands in God’s plan. For me, I believe this is my ultimate sin. My nature is to control. Control my surroundings. Control my future. Control what people think of me. Control my family. Control my pain. Control. When God doesn’t work in a way that I think he needs to and I am forced to relinquish control I become very defiant. I start putting my hands in his plan which does nothing but cause me more pain and heartache. Ziafat said, “You see, at the end of the day, I don’t want to be a part of something, I don’t want to be a part of a life that was me, that I did it. At the end of the day, I want my life to be something that I couldn’t explain any other way but to just say, “God did it.”  That’s what I want. I want THAT life. I want to know that as long as I am obedient to the Lord that I cannot mess up his plan and purpose for my life. I want to know that I if I keep my hands out of his plan that this short amount of time that I have here on earth will be used for exactly what it was intended for. No more, no less.  For that to happen it will require a daily sacrifice of relinquishing my control and desires and repenting relentlessly when I fall short. 

“Woe to the obstinate children,” declares the Lord,

“to those who carry out plans that are not mine,

forming an alliance, but not by my Spirit,

heaping sin upon sin;

Isaiah 30:1

• To live in the gap you must RECOGNIZE WHAT THE TRUE REWARD IS! A relationship with God is the ultimate reward, NOT the promises made or the plans for your life. Yes, God made us a promise that we would have abundant life but you will never be fulfilled in that if you are not first fulfilled in him. I have been so wrapped up in what I thought was God’s calling for my life that I put him on the back burner along with my family. I had great visions of traveling and medical missions and being covered in African babies. God gave me a heart for these things so for a long time I thought I was good and noble and it was my husband that was a stick in the mud for not allowing me to carry these things out. He was standing in the way of God’s plan for my life. Now I say that out loud and its makes me laugh. I can imagine me in a state of “holier than thou” mentally berating my husband for not being “Godly” enough to allow me to bring a tribe of orphans into our home and then subsequently leaving him home to take care of our new Jolie-Pittesque brood while I travel the world on medical missions. That was God’s plan for my life! How dare he stand in the way of that! I imagine God’s retort being something like, “So your telling me that I, the Sovereign King, the creator of the Universe, the Almighty Father, am actually deterred by one individual? I created the universe in seven days but cannot pull together this grandiose so-called plan of mine because Michael Allen stands in the way? I don’t think so.” This is not to say that God will not use my passions in some way, shape, or form and that Michael will not one day share in those with me. This is to say that God has shown me over and over and over again that my relationship with him comes first, my family comes second, and my heart’s calling comes third. I will be fulfilled in His time, in His way but not if my priorities are not in order. True fulfillment will only come unless we are first fulfilled in Him and him alone!
• Ziafat made a wonderful illustration about how God holds his promises and plan for our lives in his right hand and how if we are so busy looking at what he is holding in his hand that we miss looking at his face. We miss the true reward that is God himself.  QUIT WORSHIPPING THE PLAN AND START WORSHIPING THE CREATOR OF THAT PLAN BECAUSE WITHOUT HIM YOUR PLAN AND PURPOSE CEASES TO EXIST IN THE FIRST PLACE. 
• I have been humbled before. God has brought me to my knees on several occasions but never quite like this.  Ziafat began to talk about the excruciating pain of the cross, but not the physical pain. He spoke about how Jesus wept and cried out not because of the hurt, although it must have been terrible, he cried out because in agony because when he took on my sin he completely severed his relationship with his dad and God turned his back on him. As a parent I think about what this might have been like for God. You hear how God sent his son to die for us but I don’t know that I ever really understood the gravity of that. As a parent I imagine my child writhing in pain and begging, “mommy please help me” and not only what it must have been like to not come to the rescue but to walk away from them for the sake of somebody else. As I fell into a puddle imagining what that must have felt like I had a vision of what that meant for me specifically. I am looking on from the back and I see God with his back to me watch his son be tortured and mocked. He is watching Jesus cry out for him, “daddy please help me.”  I wait for him to merely nod and unleash the army of angels to come from the Heavens to rescue his only son as I imagine he was aching to do and yet he does nothing. He turns his back and when he turns his back on his baby boy he does this so that he can face me….a sinner, a blasphemer, a naysayer. And Jesus, knowing that the only way that I will ever be able to see the face of God, takes my sin so that can happen. And after knowing the sacrifices made, I still chose to keep my eyes on what God had in his hand and what he could offer me instead of looking at his face….
• If you understood the reward you would give up ANYTHING without ever asking why… If you truly understood what it meant to have a relationship with God nothing would ever even come close. You must diligently seek that relationship. You must sacrifice and then persevere and maintain that sacrifice so that you may have relationship with Him. Persistent sacrifice shows faith and one sacrifice prepares you for the next.
• Trust in the bigger picture. Ultimately Abram never would see God’s promises played out. We have to know that the ultimate blessing is to even get to be a part of His plan in the first place.