Tuesday, July 29, 2014

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.


Monday, July 28, 2014

Changes

          It's been a very long time since I've written on here. As always much has changed. It amazes me sometimes how quickly life can change. It's hard not to be stubborn and not take change well- and roll with the punches as they say. Especially when the changes are unwarranted. I know I used to struggle really hard with that out of control feeling, the one that you get when things don't work out the way you had hoped they would. But that's just part of life, isn't it?
          There have been so many times in my life when things didn't work out the way I had hoped or pictured in my mind. For a long time I thought that if I didn't set myself up and hope for something then when the thing didn't happen I wouldn't be disappointed. Sounds safe, right? Nope, not a chance. I think in many ways I felt even worse. I had nothing to reach for or hope for or go after. I know it's miserably disappointing when something doesn't work out but how else would I have learned? Some of my biggest blunders, God has woven into my greatest blessings.
        Why do you absolutely loathe when our plans don't work out according to what we had in mind? We seem to have a nature within us that wants to control everything and have everything our way. A nature that is contrary to God's will for our life and all out contrary to God. We don't know and can't possibly understand the plans that He has for our lives.  But He does. He knows exactly what He's doing. That's what can make it so terrifying. His plans most likely coincide with our plans, leaving us traveling down a path we never would have chosen for our selves.
          A prime example for us right now is, we had hoped to move out of Wisconsin one day. One day we might but right now, it has occurred to us that we're meant to be here. As painful as it is, when winter comes. As depressing as it is, when it's so cold we have to let our car warm up for at least 20 minutes before we can drive it, we're still here. Oh, I drag my feet and am filled with those ugly anxious feelings when I know the seasons have changed, officially into winter. Most of the winter I feel like a caged rat. My whole body aches, I get chronic headaches, the sun doesn't shine for days. In the morning, my car used to sound like a jack hammer. Winter in Wisconsin is painful, ask anyone who lives here. I yearn deeply for palm tree's and sandy beaches. I long to wear summery dresses and shorts all year long. I want to see the beautiful sun each day. While I can't be sure, exactly why we're still here but I have a few clues. I know that all I really need to know is that God has me exactly where He wants me and where He needs me. If it were Gods will for us to be anywhere else it would just be so.
           Sometimes that is a really tough pill to swallow but I tend to think that if I were able to do whatever I wanted or live outside of what God allows in my life- I would never grow as a person and eventually I wouldn't be happy either. I remember doing things the hard way, the way I wanted, I wasn't happy. At the end of the day, I still wasn't happy. Now, I can at least rest knowing that I have a heavenly Father who loves and cares for me and has a plan for my life. I don't even have plans for my life right now... I know that nothing will succeed in my life without His divine hand in it. Even in the darkest of times in my life, He was there. I know His intentions are good, I know He won't harm me. It says so in Jeremiah 29:11.
         I'd like to keep my first entry in a long time a bit light hearted. I pray someone reads this and is reminded that God has a plan for our lives. We don't know what it is but that we have to trust that whatever it is, it will be for our good and for His glory. While we may not understand it at the time and we may never understand this side of heaven. One day I pray this life; the joy and the pain will all make sense.

Friday, January 6, 2012

(First post of the new year! ) Unearthing

You see for me there is no cure here
This Earth has nothing of a solution to offer
I am heavy laden with open hands
And you're the only one who fills them
You live with in me
You bring me peace
And calm the storms that surround me-
the waves that threaten to take me under
Nights I lay awake in wonder
How long that this too would pass
dodging one bullet after another
You never promised this life would get easier
but you did promise you would never leave my side
-You haven't.

Thursday, December 29, 2011

My Lord

You've painted me pictures, you've sang me songs
You've wiped my tears away, you've moved me along.
You've give me strength to stand up
when all i've wanted was to lie still
But i've been able to do anything
under the umbrella of your strength and your will.
You provide all that I need every day i've drawn in breath
You'll be right there with me, even in death.
They say you come into this world with nothing 
and you leave this world with nothing as well
From this world I'll take a piece of you
because you picked me up every time I fell.
I want to do nothing more than to become more like you
every endeavor I embark on you've seen me through.
I can feel the peace of your warming smile
I never fear being alone because you've been here all the while.
When the worlds troubles are whispering in my ear
you remind me, I have nothing to fear.
You're right there holding my hand
just as you said you always would
I call out to you in times of trouble
just as you said I should.
Most days my heart doesn't ache
my mind isn't filled with fear
you possess the loving compassion I need,
my best interest at heart, you hold me so near. 
I pray to keep you in my heart always
in my thoughts you should always be
my mouth is for your praises
anything I am missing, open my eyes to see. 


"I praise you because I am fearfully and wonderfully made; your works 
are wonderful, I know that full well."
Psalm 139:14

Thursday, December 22, 2011

Back to the beginning of Eternity...

       With the upcoming Holiday celebration a foot, I think about where this holiday's humble beginnings are rooted. In Christ. Some folks would argue that Easter (the celebration of Christ's death and resurrection) would be the bigger one to celebrate. Let me start, I am not here to argue. I am here to share the gospel according to how it has applied to my life. Christmas is filled with wonder; beauty, birth, a hope and a future all because our Savior was born on this day. Without His birth we wouldn't have eternal life, because without His birth we wouldn't have His death either.
     It all began with Mary. A faithful servant of God. Mary was already pledged to a man named Joseph.
     "The angel went to her and said, greetings you who are highly favored! The Lord is with you.
     Mary was troubled at his words and wondered what kind of greeting this might be. But the angel said to her, do not be afraid, Mary you have found favor with God. You will be with child and give birth to a son, and you will give him the name Jesus. He will be great and will be called the Son of the Most High."  Luke 1:28-32


     Christ's birth truly is the greatest story ever told! An unlikely beginning, ending with a ground shaking ending.
     I understand why we give gifts at Christmas time. I got roped into that for a while too. More was better. Not gifts necessarily from the heart, just more. More stuff. And you know where I'll go with that, read my blog entry entitled "stuff." I have decided (because I was inspired by something I heard on the radio) that next year we should only give each other 3 gifts because, after all, that's all Jesus received. That sounds like a reasonably amount of gifts to give to your loved ones. And the rest that would ordinarily be given, give to a family that is in need. Or someone you know doesn't have family or anyone to celebrate with.
      Through the years, thanks to the way our world has been heading and thanks to our social media- the reason for the season has been nearly forgotten. Except to those of us who have Christ living in our hearts. Some would argue that the Bible is so old and doesn't apply to life here and now but those who know Christ know it's more applicable than ever! Jesus is more real than ever too. This year I just want to give thanks and praise to God for His birth! Without Him I am nothing.
       "The Lord is my strength and my shield." Psalms 28:7
      " I can do everything though Him who gives me strength." Philippians 4:13
      Our world is plagued with a not enough feeling. Everything is never enough. Paul speaks of contentment in Philippians 4:10.
       "I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and i know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through Him who gives me strength." Philippians 4:10-13 


     I had to put the prelude to Philippians 4:13 in here too because it very much has to do with this season too. As I have posted in the past, there any many who don't have and are in want or need. They very well could be like Paul in their situations and be content. But, there are those of us who have and should give to the have nots.
     The true reason for the season is to give thanks and glory to our Savior Jesus Christ for the life He has given us. For the life that He stepped into and became flesh to reconcile us to God. Without Him this life is all that we have. And I am not willing to bet on my own intelligence that there is nothing beyond here. Because there is too much written, seen and unseen for me not to believe in Christ. He came here to give us life. And I want to invite you all this Christmas season to celebrate His life with all of your hearts.

Merry Christmas, God bless!



Friday, December 9, 2011

I don't need to understand.

      Sometimes we find ourselves asking "Why?"
I know I have found myself there more than a few times in my life. Crying it out loud at some points in my life. I felt alone; lost, hopeless and exhausted.
     Once the dust settled, I realized it was my mind that was exhausted not my legs. My mind was tired because I didn't give it up to my Father to sort out.
     His plan is not our plan. How could we possibly even begin to understand what is at work in our lives. He knows it all.
      "My frame was not hidden from you when I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, O God!" Psalm 139 


      I think Psalm 139 says it all. If you read it in it's entirety You would see for yourself it says it all.
He knows things we don't. The before, the after. Our thoughts before they're formulated in our minds.

     Think of a time when you got yourself into a bind... Focus on that for just a moment. You weren't following God were you? Your best idea for yourself, lands you into trouble. And still at that moment, you thought to yourself, Why? Why did this happen to me? Or, how did I get here? You know how you got there. You had an idea. A not so bright one and now you've made a mess and you're sitting in it. That's what happens I guess. For every poor action, there's a consequence. I know it's a huge pill to swallow. I've swallowed that pill before too.
      Or how about when you're doing everything you feel God is asking you to do and still, something goes wrong. This surely a time when you would ask Why? Like, why are you doing this to me?
Here is what is difficult for all of us to accept. It's His will... His will. His plan. His thoughts. His view- because he can see it all, the beginning and the end. We make sacrifices here while we're in this life, that if given the choice we never would have made them. Losing a job, a loved one, money, a child, our homes. Hurricanes and tsunami's rip through peoples homes at night while they're fast asleep. And if they are blessed enough to wake up the next day or in the midst of the chaos, would you hear them saying- Why? Or would you see them dropping down on their knees, saying: "Thank you Lord for sparing my life." When rising to their feet again, shuffling through the rubble and collecting what's left of their lives.

       I don't need to understand. I just need to follow. Because I know he's there. He has been every where I could possible be. He is everything and the nothing in between. I can take heart knowing He has been every where I could wind up being. There would be no point in our existence if we already knew everything there ever was and will be. What would be the point of this life. We were created to be in fellowship with Him who put us here. We were made to worship Him. But He loved us so much that He wasn't about to "Make" us love Him, or follow Him. It's our choice. Free will. So, you decided to take the wrong path... Why ask why. You know why. And even when you did take the right path, His path and something goes wrong, take heart, it's His will. He's got it all under control. All of it.

     Find peace in this world, please. Ask Christ to come into your heart to live there and be your rock. If you don't, life is going to seem like a really long pointless road. At least if you know Jesus, you have someone you can count on to be there through all of your storms.

God bless.



         "The Lord is with you where ever you go." Joshua 1:9





Monday, December 5, 2011

My home on earth

     When I woke this morning, I looked outside to find it's snowing! Typical thing this time of year, but it's the first. I sat for a few moments and watched all the individual and unique snowflakes fall to the ground. Some melting upon contact to the patio and others collecting in bunches with the others in the grass.
     The sight of the snow takes me back. Back to when I was a kid again, staring up at the sky watching as every flake threatened to land on my face. Mouth wide open, arms extended and smiling. It was always the best going back into the house, getting out of my snow attire and looking into our yard to see my accomplishments for the day. The snowman; the fort, the wall to hide behind. Even the track the dog's feet had worn into the snow around his run chain. And if you have a dog, of course you know about yellow snow :(
     But the greatest thing of it all is that when I had enough of the cold, I could always go back into the house and get warm. Sometimes I would even fix myself a cup of hot cocoa or hot apple cider. Now, I only drink hot tea. I couldn't imagine not having a home, could you?
     Not long ago, I was in a place where I had a roof over my head, though it wasn't my own, I still had warmth to come home to. The living situation was getting to be increasingly difficult and at times I felt unsafe.
I prayed... I prayed for my Father to get me out of that situation because I knew it wasn't conducive to living a more Righteous lifestyle. I prayed He would place me where ever He wanted me. And He did. I awoke one morning unafraid of the delusions I had developed about taking the chance of failing. I made one stop somewhere, she made a phone call and I waited a couple days... After the couple days had passed, I got probably one of the happiest phone calls I had gotten in a long while; "congratulations! When do you want to move in?"
     I cried as soon as I hung up the phone. My Father heard my prayers. I cried and prayed to Him so many nights and because I was at the end of my rope and wasn't fighting Him anymore He responded- big.
      I often refer to our place as our humble home or His house. Because it is. Without His gentle persuasion who knows where I'd be. Without faith I would have stayed in the hamster wheel of fear and doubt and grieving.
       I guess I am bringing up two points here. One, you MUST stay faithful in prayer and in deed. And stop fighting Him, He wants to bring good things into your life. And once you let go and let God, He will.
      Point two, be grateful for the home that you have. Unless of course you are in danger, then you must act. Faith requires action. There are too many people out there who don't have a home. They aren't outside "playing" in the snow... They may have no other choice but to live it out until spring breaks.

     What can we do? How far can our arms reach? How can we get involved to do some sort of outreach? And honestly too, from the out pour of our hearts! Whether it be through our Church communities or you spending a saturday helping those less fortunate than yourself. How can you? Pray about it.
        I find joy in scrubbing my toilet and cleaning and cooking and doing the laundry. I find joy in the little things that some people are only inconvenienced by. I love it! My Father placed me in this home, His home. He wanted me safe. He wanted me warm. I stopped fighting Him on something in my heart I wanted so badly. But at the time I just didn't know how to receive it. I let go.

Let me leave you with two pieces of scripture,
     "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Phillipians 4:6-7


- And if we are truly to be more Christ-like (being His followers)
"For the Lord your God is God of gods and Lord of lords, the great God, Mighty and awesome, who shows no partiality and accepts no bribes. He defends the cause of the fatherless and the widow, and loves the alien, giving him food and clothing." Deuteronomy 10: 17-18 

I pray we can make the changes in the ways we have only talked about doing so. I pray we can do the things we have merely aspired to do or commended someone else for doing. I pray we can be give thanks and  praise to our Father who looks out for us and provides when we really don't deserve it. We don't "deserve" anything! It's all His anyway, we've just got it on loan.

God bless!