Reflections

     I remember my 20's... They weren't that long ago, really. But I often wonder where they went and what the hell happened?
    I remember the days of not having an agenda; sleeping until I just woke up, working so I had enough money for the essentials and a whole lot of fun...
 
     What makes my 20's even stranger is how at times, I feel like I'm a 15 year old trapped in a 30 somethings body. I look at my three kids someday's and think to myself, I'm somebody's mother? It's not that I never thought I'd have kids, I knew I always wanted to, it just seems like sometimes it snuck up so fast on me. As if it were an over night thing, like BAM here you go- 3 kids...
 
     What on earth happened? When did life get so serious? Or at least it sure feels that way. Life the last several years has felt like a list of don't do's. I miss trying new things and going new places... I miss having fun.

   I know of a real turning point for me and not for the better either... When Cookie was born. You know that moment right before something really bad is about to happen? You're frozen in place, watching, waiting for the impact? If you've ever been in a car accident that you saw coming, you know what I'm talking about then. I've been living there, someday's. I'm holding my breath, I'm braced for impact, my eyes widened... I've been there for over two years.

   The strange thing is, we've had some really good days lately. The weather has been warm and the sun has been shining bright. It's the perfect combination for Cookie to have a good day and she's been having a lot more of them lately. I've even been laughing a bit more, smiling and doting upon how "good" things have been but somewhere in me, I'm still posed for disaster.

    Jesus said He came to give us life to the full. That scripture often cycles through my mind. I'm not living. Not even close. Someday's I come to the conclusion that I left my heart bleeding on the floor of that hospital where one of our worst nightmares came true. At least we thought it was a nightmare...

    In the midst of this great trial, we've discovered what a blessing all of this is. Now, I've never been the greatest at coping with the hard stuff, I've been accustomed to just shutting down. It's always been easier to deal with the pain that way. Due to the nature of this life lesson, being that it isn't temporary or so it seems, it's going to last a while... I've come to the realization that I'm going to have to learn how to live like this... Really live, not just get by. Though I've been walking it out for over two years now, it's time to pull the veil down and feel everything again, even if it hurts.

   I don't think anyone likes pain... I've endured three labor's; an unhealthy helping of dental pain, heartache, broken bones, wounds etc. But I don't know many that would willingly walk into it, yelling; "hit me again."

    We're all here, walking through fire just to get to the other side. Everyone's blaze looks different from the next guy or gal's. We've all come from different places, gone through different things and were affected by those things respective to who we are. It's shaped us.

    I've thought a lot about how I want this to shape me... It's already begun but I just need to let go and let the Lord go to work on me. I don't know most days what it is that I'm holding onto? Am I afraid that I'll lose myself? The person I once knew myself to be? I know I'm not her anymore. If there is anything that I do know, it's that after everything we've been through the last couple of years, we could never be those people again. We've been forever changed. I take heart in knowing that I'm closer to being like Jesus than I ever was. I feel it in my heart. That is the ultimate goal while I'm here, after all.  "By this everyone will know that you are my disciples, if you love one another." John 13:35

     We didn't think this was what we signed up for but it was, walking with the Lord. It was bigger than my "down for whatever" mentality that I had when I was in my 20's. In my 20's I was reckless and didn't really care about anything or anyone but myself. When I came to Jesus, I did sign up for "down for whatever." I am to "take up my cross daily." I still have a long way to go, being more like Jesus. I'm a work in progress. I'd rather be plodding forward than just sitting and sulking over what I thought could have been.

   I know that was a hang up of mine, the picture I had in my head. It looks nothing like what I see. It wasn't a part of the plan. But how often for life look like the picture in your head? We often think we know whats best for us. The easier way through life. The un-messy life. You know what, I'd get bored. I do that... I get bored pretty easily, I really do.

    I've been challenged to live a life without boredom. Sure, I have days that I get bored, plenty of them. But they're messy days. They're unpredictable days. In my 20's, everything was pretty predictable. It was perfect for who I was then but not for who I am now. Fortunately, I've evolved beyond that woman. I care a lot more. I love a lot harder, I finally know what love really is. It's taken me all of this to learn what love is. I know that the whole point of being here is love... The world is missing the point or hatred is masked as love. Think about that one and what you see all around you now. That's another story for another day.

   Another scripture that has been coming to mind lately has been: "Whoever finds their life will lose it, and whoever loses their life for my sake will find it." Matthew 10:39

   I think about it often, handing over the vision I had in my head in exchange for what the Lord has in store for me. I surrender! Again, I surrender... I can't keep fighting what is for what I thought I wanted. Okay Lord, give me your vision. Show me what you want, I want to love like you do. And help me to choose peace about it rather than feeling defeated.

    When I feel like I just can't do it anymore, that still small voice reminds me I'm not alone. Keep going! C'mon, this way love, you've got it. Don't give up now...

    I know that I won't have it my way, it's getting my mind to agree with what my heart already knows.

    My 20's are gone, along with a wayward life. I have more purpose now than I ever did before and I'm working on embracing His vision. Here we go...

Partial Trisomy 9 & 12

       It was exciting being pregnant. It seems like it takes an eternity to meet your new baby but it is well worth the wait. Even the labor is worth it, in hind sight of course. While in the midst of it you can think of a hundred things you would rather be doing, that are probably a lot more fun. Bringing Lily into the world was especially painful. Pain I can't even begin to describe. Thinking back on it now I am shocked I even made it through that...
 
        She didn't cry when she was born. The whole room fell silent except for a few suspicious whispers. After what felt like forever a very raspy cry rang throughout the room. What a relief, we couldn't help but cry too. She was nearly as blue as a summer sky. They wrapped her up in blankets and laid her on my chest. Oh what a beautiful little blessing she was. Our little angel, we finally got to meet her...
   
       The doctor and nurses were clued in by a few of Lily's abnormalities right away. Her little pinkies and pointer fingers didn't look right, they were turned in. Both of her feet were different. Also they later told me her hip was hyper-extended upon birth too. They gave her oxygen upon coming out and has to resuscitate her to some degree too. All of this I found out later, rather than while it was going on. Her blood sugar was low too. They took her to the NICU unit. Our first meeting was brief which made me feel very worried and sad.
      I didn't get around to going and visiting her until nearly 9 in the morning. She had been born at 4:30 am. I held her close and prayed over her, no one had answers as to why she needed to be under extra special care. My husband had been able to go and be with her for a while and so did my mom. Now I finally got to hold the little baby that I had been carrying in my belly for 9 months. And even though there was something "wrong" with her, she was all together perfect to me. She was beautiful!
   
         The doctors ran various tests on her, they sent out for genetics testing; did x-rays, ultrasounds, blood work. I had prayed that her "abnormalities" her because of how she was positioned in my belly. As the test results continued to come back normal, we were grateful but still miffed as to why the great concern. In the meantime, Lily continued to need sugar water in an IV. Then she spiked a temperature out of no where. So they put her on antibiotics, they also tested her for meningitis and ran more blood work. The thought of them tapping into her spine with a needle made me shutter. She was only a few days old when I was able to go home.
   
        We were all too eager to go home. It was difficult for us to be in the hospital where our privacy was completely compromised. We had no down time to try and sort through how we were feeling. Lily's future felt so up in the air and so did ours. We packed up our things, knowing that we weren't going to be able to take our baby home. It didn't hit me until I was sitting in my wheel chair waiting for my husband to pull the car around. I lost it. I had a diaper bag. Greeting cards that said congratulations, a couple of balloons, the infant seat was in the car. But we had no baby. I had seen other mothers in the elevator leave with their new baby and even congratulated them. I meant it too... Here it was our time to go home and we had no baby. Thankfully I had a wonderful nurse that latched onto me and hugged me until my husband came around with the car. I was a sobbing mess. How could I not see this coming? -That I would handle this so badly. That was one of the emptiest feelings I can ever recall having in my life.
   
        We needed rest. We rested when we could. We spent a lot of time up at the hospital. I couldn't imagine not spending time with Lily. We fed her bottles. We bathed her. We changed diapers. We listened to music and read to her. By her 5th day in the hospital she wasn't able to keep enough oxygen in her blood, so it was decided that she needed some oxygen. The put a canula on her. Yet another blow to the hope that we had that she was going to come home with us soon. They were able to get her off the sugar water, so her IV was removed but now we had a new cord to contend with, the oxygen line. She also had a bout with jaundice. Up until this point we had tried to keep as light hearted as possible. While she was on the billi blanket we had said that she looked like a glow worm. She was terribly cute...
     
         Its now sunday, 6 days in the hospital. We got a phone call wondering what time we were going to be in to see Lily. When we got to the hospital, the resident doctor had wanted to talk with us before he left. So, my husband and I, the doctor, and two nurses went into the family room. Doc was holding a few pieces of paper in his hand. I think my husband and I knew this was it. We were going to get answers today. Lily's genetic testing had come back. The doctor explained everything as thoroughly as possible, at least what he knew about it. Lily was diagnosed with Trisomy 9 partial, a very rare chromosome abnormality. When we got the news it felt like more of a death sentence than anything else. There was no inflection of hope in most of the words that followed. I felt myself go into shock. I felt like i was in the midst of a nightmare, I wanted to wake up so badly but this was it, this was our new reality. The only thing that came to mind at the moment, was what are we supposed to do, as her parents. So I asked the doctor. his reply made a world of a difference to both of us, "just love her" was all he said. That was all he needed to say.

       They left us to sort through our feelings for a few minutes. My husband, being the loving man that he is, began to research immediately. He wanted to know what we had on our hands. The internet had information but given the exact mixture or my genes and my husbands genes there is no way to tell how Lily will do. Even now, we just don't know. That Sunday night I went back to the hospital alone to be with Lily. I needed to. My husband needed sometime alone to work through what he was feeling too.
   
         I got to the hospital and washed my hands, I could see she was sleeping. I just wanted to hold her. The nurse and I moved the recliner over to her area so I could recline with her zipped into my hoodie as I had already done so many times before. I tucked her in, laid my head back and prayed. I prayed silently and I prayed out loud. I told God I knew that she was His before she was mine and that I'd like for her to stay with us here on earth if it was His will. But also that if it was't His will for her to stay that I knew He would get us through it. I could feel the tears streaming down my face again, silently. Even though everything about her birth was un usual and difficult, I still had a peace when I was with her. There was something about holding her near to my heart that seemed to make the noise in the world just disappear. The diagnosis disappeared. The sadness; the fear, the anguish I was feeling inside. I felt like my heart was ripped out that day but when I was with Lily, holding her, it went away, at least for a little while. Even though I had been crying, I still wanted the nurse to take a picture of us together. I wanted any moment I had with her caught on camera because we just didn't know. We didn't know if she was going to pull through this. The outlook looked so grim and no one was giving us any reason to believe otherwise. Except for Lily herself.

       I felt better about everything after that night. I felt like I had to lay her at the foot of the cross once more to even have the hope of being able to keep her. Many days since that wonderful doctor said "just love her," that has been the words that my heart has uttered too. Lily spent a total of 10 days in the NICU. She had some fantastic nurses that looked after her and cared for her. I am thoroughly convinced they are God's ordained bunch to do what they do. There were a couple that especially touched our heart. Bringing Lily home was no small feat. I had to re-learn CPR. We stayed over night in the hospital again with her to see how we handled her being on oxygen and a pulse ox monitor. It didn't go that well. I slept for maybe a total of 20 minutes all night.My husband didn't sleep much more than I did either.  Nervous I guess.

      I was terrified at the idea of bringing her home on oxygen but there was no other reason that she need to be in the hospital at this point. We had a long list of follow up appointments to schedule. We had a list of instructions and phone numbers. We really had everything that we needed to care for her at home. Lily had been losing weight and not gaining it back in the hospital, even being on a higher calorie formula. We were also faced with the threat of failure to thrive. My husband and I were convinced we could turn that around upon bringing her home.

        It had been painful looking upon her in the hospital hooked up to all of these machines and oxygen and and IV. We felt helpless. We were frustrated and angry even. I just couldn't wrap my head around why a new little person could be so broken. When you purchase something at the store, it's new. It's in the best shape it's going to be in- ever. I can't tell you why this happened to us or why it happens to anyone. It was something that was completely out of our hands. It was something that happened the moment Lily's cells began to divide. There was nothing we could do that could have impacted the outcome. Now, there is so much that we can do to make a difference in the outcome. Not one of us knows how long we're going to be here but we can surely make the best of what time we have. I could choose to live my life angry that this ever happened in the first place. That anger would spill over into my family and the amazing privilege I have in taking care of them. Was this what I would have planned for my life? No... I don't think anyone would. Am I grateful now? Some days are easier than others. I am immensely grateful for Lily, I wouldn't trade her for a different child. She is an absolute miracle and wonder to us. There are a few things I do know.  My husband and I were chosen to care for Lily. I will take that as a high honor to be able to care for such an amazing and special little girl like her. The other thing I know is that we have today... Today we are together, today she is alive and thriving. She has already over come so many obstacles. She is already a medical mystery and I pray she continues to blow doctor's away with her progress.

       Jesus said that we will have struggles and trouble in this life. He wasn't kidding. I do know that if it weren't for Him and the strength we find in Him we wouldn't make it through most days. He also said not to worry about tomorrow because tomorrow already has enough worry of its own. So, we must make a conscious effort to stay in today.