As my friend Lee said, "With all that happened in your life last year, it is only fitting the way Marlee was born". I can laugh at that statement now because 2012 started with a bang and ended with a bang so David and I were really looking forward to a fresh new start in 2013. Looking forward to life settling down a bit and hopefully no surgeries or hospital visits. God definitely has other plans.
I can honestly say that His ways are higher than our ways and His plans are definitely not ours. It was not in MY plan to have a 5th child. My mind was closed to the idea of another child and I felt "complete" after Mason was born. I often told people when they asked "yes, we are definitely done!". Oh how God has a sense of humor. I know He laughed at me every time I gave that answer.
I love how God will use a decision you make to make you realize that He is in total control. Matthew and Michael both played fall ball this past fall. It was crazy! No seriously, it was! David and I would literally be in two different cities at the same time on the same night so we could support the boys at their games. It was like that almost every game. I was 8-9 months pregnant and constantly on the go. It was such an exhausting time. We made the decision to not allow the boys to play Spring ball because we would have a newborn thrown in the mix and we didn't want our life to be so hectic and crazy when Marlee got here. We needed a break. When the Spring season started, I began to wonder if we had made a mistake. I started seeing everyone's Facebook posts about their teams and games and all the fun they were having. I missed seeing all of my baseball buddies. We have made some great friends through baseball and to not be around all of them was sad for me. I am shy and probably come off as a snooty person at first but once I get comfortable around you then I'm pretty much a ball of laughter. :-) But, not being around our friends making tons of memories and sharing loads of laughs at the ballpark left me feeling very left out. Even being in a crowded room with some of these friends, I still felt out of place. I had to keep telling myself that we had made the right decision for our family. That decision was a huge blessing in disguise.
A few weeks after Marlee was born, I started noticing that the right side of her head looked bigger than the left side. It looked a little misshaped to me. David thought I was being paranoid a little but soon started noticing it too. It was almost as if the front right lobe was protruding out while the back left was protruding out and the front left lobe was smaller while the back right was a little flat. It freaked me out and I just knew she had a brain tumor or something. Why is it that our minds automatically take us to the worst case scenario?
Anyway, Marlee was scheduled for her 8 week checkup and while our pediatrician was examining her he mentioned it to me first. I was so relieved that he had noticed it too. He told me that he wanted us to go for an x-ray and ultrasound to make sure everything was ok. We went to Children's South and had the tests done that day. The radiologists said that everything looked good. Our pediatrician wasn't convinced and neither was I, so he talked to a neurosurgeon friend of his and he recommended that we see someone at the Cranio-Facial Clinic at Children's downtown to make sure they weren't missing anything.
While we were looking into that problem, our pediatrician was also concerned because Marlee was not gaining good weight. For her to be 8 weeks old and only weighing 7lbs 7ozs, that was bothersome. She was 7lbs when she was born. I had been pumping breast milk and giving it to her in a bottle (will explain that later) and so we tried all kinds of different ways to get her to gain weight. She has severe reflux so we thought that was the reason for her not gaining weight. All the different things we tried was just not helping.
I took her to the Cranio-Facial Clinic appointment and the Dr there (I did NOT care for his "bedside manner") basically told me that she had a positional issue with her head and that it would probably correct itself over time. What this Dr had to say was reported back to my pediatrician but he was still not convinced.
At Marlee's 4 month checkup she was still not gaining weight like she should and I also had mentioned to him that I did not think she had very good head control. She was kind of floppy. He was also still concerned about the shape of her head. He noted her lack of muscle tone and said that he wanted us to see a pediatric neurologists. While we were waiting for that appointment, I came across a story on Facebook called "Charlotte's Story" and began following it. It was about a baby named Charlotte that had been diagnosed with SMA (Spinal Muscular Atrophy) on the same day that Marlee was born. SMA is basically a genetic disease of the muscles. Most babies who are diagnosed with SMA don't make it past their first birthday. :-( Her story was heartbreaking. As I was reading her symptoms, I noticed that Marlee had some of the same symptoms they were describing. Low muscle tone, floppiness, lack of good head control and some other things. My heart sank.
We went to the neurology appointment and he too was very concerned about her low weight and lack of good muscle tone. He performed a few tests on her and decided that she needed to be checked for SMA. I started to cry in his office. He knew, at that point, that I knew what SMA was and he handed me several tissues and told me that he wouldn't be a good doctor if he didn't check for this first. If the results came back as SMA then that would be the diagnosis and there was nothing else they would be able to do. He told us that the results would have to be sent to Baylor University and it could be up to two weeks before we heard anything.
David and I were silent for a good portion of the ride home. Our minds were racing. We didn't know what to think. How would we get through the next two weeks wondering if our baby girl had this horrible disease? How would we deal with that? How would we explain it to the kids? There were many times in that waiting period that I burst into tears. David and I tortured ourselves by scouring the internet researching SMA and reading countless stories of families affected by SMA. We would go from high to low. We tried not to tell the kids about it but ended up telling them because they didn't understand why I was crying so much. Why I didn't want to put Marlee down.....just hold her all the time.
During that time I kept telling myself that God was in control and that I trusted Him with her life. But the haunting thoughts and the what ifs and the how will we handle this or that kept creeping into my mind. My mind had already taken me to places that I didn't want it to go. I know David was going through the same thing and having the same thoughts as I was. He is a private person when it comes to his deep emotions...unless you tick him off (lol) so for him to text me and tell me that it was hard for him to work because his mind was constantly on Marlee was a big deal. I knew it was affecting him in the same way. I knew he was worried. One day at the beginning of April, he was working from home and I was sitting in the living room floor folding clothes with my thoughts on Marlee and all of a sudden David asked me "Would we bury her with her blanket?". Such an innocent question, but I immediately burst into hard tears and told him not to ask me that. Not to ask me that out loud because I had already thought of that same question and I didn't know what I would do. I felt bad for him because I knew he felt bad for asking the question and I knew he wasn't asking me out of ugliness or anything like that. I knew that his mind had gone to that place too. As much as we were saying we trusted God, in our hearts we couldn't help but think the worst. The days waiting and waiting for the results were so hard emotionally. That was all we could think about. It consumed us. I would hear a song and burst onto tears. We were on the edge.
During that week, I wrote this little poem. Please forgive the elementaryness of it, but it is what was on my heart that week.
Marlee's Prayer
I sit here holding my baby girl so tight,
Knowing in my heart that she is precious in Your sight,
You know the plans You have for her, no matter what they be,
Lord give me Your strength when it's just too hard to see,
You knitted her together in that special place,
Those blue eyes and dimple nose on her beautiful little face,
Her long slender fingers and curled up little toes,
A smile that lights up my heart, even full of woes,
Your love for her is more than I can understand,
Lord help me to accept what is already in Your plan,
Give me guidance and wisdom and help me to see,
That trusting in You is the only way to be,
For You alone are worthy and all my praise I give,
Safely in the palm of Your hands, she will always live,
Thank you for her little life and the joy she brings each day,
May she always know how much I love her, in Your name I pray.
I love you Marlee Kate!
xoxo, Mama
A week later, I was sitting at work holding Marlee when my cell phone began to ring. I immediately recognized the number as coming from the neurologists office at Children's. I was so nervous to answer the call. I answered and to my surprise, it was the neurologists. I had fully expected it to be his nurse telling us that the results were in and that the Dr wanted to meet with us. He had previously told us that he would not give us the results over the phone whether they were good or bad, so you can imagine my surprise when I realized it was actually him calling me. He then told me that he had the test results back and that he was going to go ahead and tell me that she tested negative for SMA!! I was so happy, I held her tight and started to cry. I kept thanking the Lord over and over! He told us that since she tested negative, the next step would be to check her central nervous system by doing an MRI on her brain and lower spinal area. As David said, we can handle whatever it may be as long as it wasn't SMA. I hung up with the doctor and immediately told my sweet coworker friend, Wendy. I saw tears of joy in her eyes and proceeded to also tell my boss who had stopped by our room. She told all of my other coworkers for me and we shared lots of hugs and tears of joy! I then called David and you could hear the huge sigh of relief he gave. We were just so happy and thankful to God!
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