NICU Days

I think that I have put off the next blog for over four months because I don't like these next 10 days. They aren't my favorite chapter of our book by any means. These are my first 10 days as a mother, my first experiences with my son, they should be some of the happiest moments in a woman's life, but the pain of these days is still often too hard to even remember. Tonight, I will probably just take you down those first five...and I will try my hardest not to put off this whole part of the story.

The last time I wrote I was wheeling down to see my son after just learning his true prognosis. My wheelchair that looked more like a shopping cart and all my I/V's were off.

I have to admit, I don't know that I remember that first time in there exactly. I do remember that day coming in and out feeling so bad because I thought, if my son was moved to another bed, I wouldn't be able to find him. I felt a disconnect that is hard to even admit. There was no lack of love, but I wasn't allowed to hold him and it prevented me from feeling like I could even discern my child. When Evan was born and they would take him to the nursery for a quick trip for one reason or another, if he started crying, I knew it was his cry, with Will I didn't have this immediate sense of motherhood. To this day, I can't tell you if it was out of fear of losing him or lack of touch with him or a thousand other reasons, and I am very blessed that this feeling only last for a few short days, but I don't know if I will ever forget that lost feeling that I had those days.

It wasn't until much later that I also realized Jason and I did a horrible job early on conveying just how sick Will was. I think this was because the hope we had inside us was too great for anyone to think that this little life could be so temporary. Afterwards, I realized that it made some of our decisions and some of my reactions not add up for others, but in those days, I lived in a fog that was unshakeable.

Will was a beautiful baby boy with these big eyes. He was so swollen initially that the pictures are almost unbearable for me. Those days are definitely not the pictures filling the walls of my home. I did take a lot more pictures those days than I did later. I still hate that I didn't get a picture every day of his little life. I know that people think I am crazy that I took a picture of Evan everyday for the first two years, but even to this day, I just always want every moment captured to hold forever.

Those first few days, we sat at his bedside and read book after book. I had an amazing nurse who would come find me when I needed to be taken care of, always knowing where I would be. I had amazing family that would just sit in the waiting room down the hall. They knew visitation hours weren't long enough and with only two people going back at a time, many of them would rarely get the chance to come back, but they just sat keeping each other company not sure where else to be, but wanting me and Jason to know we weren't going at this alone. I would stroll through for visits, sometimes sitting while Jason would take someone back to meet our son for the first time.

I cry even tonight sitting here because newborn babies aren't supposed to have visitation hours and to only be seen two-by-two and they sure aren't supposed to sit in a bed unheld by their own mother.

I was discharged from the hospital 5 days after he was born. It was all insurance would let me stay. I had just had a C-section, so no one would let me stay in the little make shift NICU sleep rooms, so Jason had to drive me out of that hospital and to our hollow home. It was hollow for many reasons that night...no mother should EVER have to drive away from the hospital without her newborn baby. Add that the fear of not knowing if your child would be alive when you returned and the fact that you, as his mother, still hadn't even held him in your arms....I sat that night in the floor of our kitchen and whaled a cry like I had never cried. I can honestly say, I cried harder that night, so unsure of everything than I did the night that Will left this Earth in my arms. The night he left this Earth, he was in my arms where he was supposed to be and the Lord was taking him for me to keep after. I had time to be his mommy and to yell it out with God, but that night laying in my kitchen, I hadn't had any of those moments yet and I didn't know if I could survive if I never had those moments.

I raced to the hospital as visitation hours opened that next morning. I had a cooler full of milk for my child and an ache to be with him that was all consuming. Jason told the nurse that day that I had left the hospital and had yet to hold my child and she whipped around and said that wasn't acceptable and she closed this little curtain around us and let me take my son into my arms. It was such a beautiful moment.

Now I know some of you are reading asking why wouldn't they "let" you hold him, and in all fairness, I think they would have let me do as I please to some degree, but they were as scared to death of his disease as I was and no one was suggesting it. I guess because of fear that we would bring him more pain by causing him more breaks, Jason and I hadn't brought up holding him and with the amount of wires and tubes, we couldn't even really be sure how we planned on getting him up and out of his bed. I think to later visits to the PICU when I would have beat a nurse if she laid a hand on him without my help or without me being present and the stark contrast between those days and these early days. He felt like he belonged more to the hospital and nurses at that point than he did to me. Holding him that day helped to start our bond and show me how to be the mother that I was supposed to be, because there was no parenting book or what to expect book that could have guided me. It all had to be done by the heart.

Thankfully the Lord guides us and gives us strength more than we can ever expect possible. Its so true that you stand stronger in your weakest moments, because for once in our hard-headed lives it isn't our strength that we are standing on. It is those moments when all of our strength comes from the Lord that we are at our strongest and can truly move mountains. I don't know why God chose me a Jason to be two of his warriors that had to be completely taken out at the knees...more than once....to stand, but He did and if nothing more, we are proof that it is possible to make it...I don't say make it "through" because we will never be "through" this chapter of our lives, this is a piece to our puzzle that will forever be there and we will always have to rely on the Lord for the strength to remember that this is not the end and there is a greater purpose to this all.

Until next time....and yes even though this tore my heart out to put down in words tonight...I promise I won't wait 4 months to write again...but come on it took me 4 years to get this far, so you got to bear with me...thank you all for taking the time out of your own crazy lives to share in our lives. Many of you were there these days, and I know you felt these pains with us...wish there was a word that meant more than just thank you. We love you all.

At the hospital

Well I am at the hospital, water has broke, C-section baby is trying to come out without a single cut...it's like a movie that you just get rushed right back to a room, right? Nope. We sit their in admitting, it was midnight, she wasn't really busy. My parents walk in, they live a lot further from the hospital than we do, so I don't even want to know how they were driving. The admitting lady is sitting there telling me that I can't go back until they have my information and since I didn't pre-register they will need everything. Water is still coming out, labor pains are getting closer together, at this point I am envisioning delivery in the waiting room. I am trying to convince the lady that this is an emergency, she is giving me that look that says "honey, every lady thinks her delivery is an 'emergency'". I get very frank with her that between my mom and my husband, I am going to give her one of them, she is going to give me the other one and they are both fully capable of filling out my information, but someone needed to push me down the hall....IMMEDIATELY!!!! She receives a call on a phone not directly in front of me, but more behind her. She is very quiet on this call. She turns back to me after the call like she has seen a ghost and all of a sudden no paperwork was as important as moving me on down the hall. I don't know who or what was said on that call, but I imagine someone told her that I wasn't being an overly dramatic mother and the thought of what this delivery might entail happening on her desk wasn't something she wanted any part of.  The doors fly open to the labor and delivery wing to a nurse holding a little piece of paper they use to test to see if it is really your water that broke. She gets one look at me and laughs, saying, "that would be a waste of my paper!"

Somehow I move from the chair to a bed and before my drug man, aka my father-in-law is there to hook me up with the good stuff, the nurse confirms that I am over 8 centimeters dilated. Once the drugs were in and I felt safe for the first time since my water had broke, things get really foggy.

My doctor made it there, we made it to the room for the C-section (another one of my spoilers...the smell when they perform a C-section makes the dentist office during filling day smell right darn pleasant).

The next vivid memory is the sound of my baby boy's first cry. It was the most amazing thing I had ever heard!!! It was our first MAJOR milestone! We were told he might not be born alive, he might not have enough oxygen to survive, we didn't know that we would ever hear him cry!!! I thought immediately, they were so wrong about it all! My baby boy is here and he is fine...just listen. When he was handed to me to see, it was very brief and he was very swaddled, all I could see were those big eyes and my heart just leapt in ways I never knew it could.

The NICU team quickly took him with them and Jason followed not letting our miracle out of his sight. What happened next on that journey of father and son was a story that I didn't know until after Will had passed away. The burden that Jason carried for those next few hours alone is still hard for me to even think of. He was there for the initial X-Rays, he knew of the 70+ breaks, he knew that the diagnosis was wrong, but a whole new prognosis was given and it wasn't anything to be joyous about. Still he took that news, came out of that room, met up with me in my recovery room (along with lots of our family that had been anxiously waiting to see us)he kissed me and told me how he got to see our little guy.

I was taken up to another room and since this had all happened in the middle of the night, I found myself falling asleep. The family left to let me get my rest and Jason and I drifted off from pure exhaustion. His grandfather came first thing that morning, before any other family had returned and was with us when the Neonatologist came to talk to me for the first time. I don't remember his words exactly, I don't know that I was even able to absorb most of what was being said to me. I was falling apart and my world was crashing all over again. This is the first time I heard of Osteogenesis Imperfecta. A disease this doctor hadn't seen and was reading up on in the hours after Will's birth. There are multiple types of this disease and there is no perfect system, without DNA testing to know where your type falls, but all signs pointed towards Will having the most severe form of this disease...These words were so hard for me to comprehend at these hours. I immediately tried to sit up, not recommended that shortly after a C-section, but I didn't care what it took, I was getting to my son, I was going to be with him, I didn't know if I had minutes, hours, days, but I had to be with him.

It's time!!!!

Well I wasn't kidding about the fog that I lived in from May until July....I have tried for weeks to pinpoint some stories from those days, and there just aren't many....I can tell you we went to a lot of doctors appointments and had a lot of amazing people working around the clock in our home. The days were very busy and we were all in a rush to a time that we still didn't know what it held. Our rush to get ready was cut short when the little man who was breach and small and not expected to come on his own decided that he was ready to meet the world.

The first of July we received our kitchen cabinets. Very exciting for a 9 month pregnant woman to have a kitchen again. We had one more doctor appointment with a doctor that we didn't want to see, but we had to have approval to deliver at the hospital we wanted to have him at and not the "teaching hospital". We wanted him to be born where we had been born, where his grandfather worked, where the rooms were familiar and the staff was family. We just had to get the NICU doctors and the specialist on board. Well they signed off on Thursday. So we were to go and start pre-registration the next week after the holiday...we still had two weeks until our due date of course so we were doing fine with time....right???? well if you have learned anything about us it is that things don't really go on our plan....EVER.

Well the holiday weekend was wonderful. I LOVE fireworks, so I drug everyone downtown to watch them, because it is tradition and I couldn't skip this year! I spent most of the weekend crawling around in my kitchen putting up all my pots and pans (nesting much.....). Monday comes around and we are all still off for the holiday, but softball for Jason doesn't take off for the holiday, so he went on...why wouldn't he, right? My dearest, best friend came over and we chowed down on a casserole that a friend from work had made, we laughed and watched a movie....all was well in the world. I mean the pain in my back wasn't anything....right??? Well I didn't think two thoughts about it and it sure never crossed my mind that this is what labor pains felt like. My friend wasn't quite as confident in that as I was, especially when she realized that these pains weren't constant pain, but more of a regular pain that you could time between.....I put back labor pains on the list of things that no one really tells you about before you have a baby....in true best friend nature, she wouldn't leave until Jason came home from softball, even though I told her that I was fine and she should go on.

Jason's dad came back after softball and still I went on about my bad self that I was just fine. They finished up whatever they were working on that evening in the bathroom...still didn't have a full working bathroom downstairs...but we had two weeks until my C-section and then I would be in the hospital for a few days, so there was plenty of time to have a working restroom for me when I would come home....yeah, you get the idea. We thought we had the schedule all figured out.

Jason and I go to lay down and I am still feeling like crap. I lay in the bed and decide that was never going to happen. I moved to the recliner and yelled for Jason that I needed a heating pad to make my back feel better. I don't think that a full two minutes passed between Jason getting me set up with the heating pad in the recliner and making it back to bed before I was screaming for him again and this time it was full panic screaming!

I was GUSHING "water"....I yell that MY WATER HAS BROKE!!!! He comes in there and says "are you sure?" Well, I will give you that I have never had my water break before, but as for what else this could be, I was all out of options. I look at him and scream, well I've never used the restroom out of there before if it isn't.....now let me give you some TMI.....another moment that I felt no one even began to prepare me for....this "water" breaking event is not as I had ever imagined. 1. if your child is breach, be prepared that there be more to the "water" than liquid substances, 2. it doesn't always just come out and stop (yep, I jumped in the shower thinking that I could clean this mess off of me before I got in the car, that wasn't going to happen, because the water wouldn't stop!), 3. labor pains are SO MUCH WORSE once your water breaks!!!! That is all of my spoilers for today, but if you haven't birthed a child and you do go into labor and your water breaks, you can thank me later.

My mom is yelling on the phone to get in the car, Jason's dad is telling Jason that he doesn't have to have a bag packed just get me in the car, Jason is taking every towel that he can find to wrap me like a sumo wrestler and get me into the car. Once in the car, we realize we've never even discussed how we wanted to get to the hospital from our house, I'm screaming, he was going too fast, too slow, too bumpy, pretty much you name it and I yelled it.....we arrive at the hospital.....and that is where I will start next time :)

Aftermath

Several of you have been excited about this post and the continued story, but I have to be honest, this part of the story gets a little fuzzy for me. I don't know whether it was being seven months pregnant, dealing with a catastrophe of this extent, the overwhelming reaction of all those around me, most likely all the above, but I remember smells and scenes from the days after the flood, but I can't really timeline those days between May and July. Guess it is a good thing that I am writing down what I do remember.

So like usual, here goes nothing.

I wanted to get down to the house as soon as we got out of bed that morning, but Jason thought that it was still under water and that we should wait just a little longer. When we did get down there, the water was still covering our street and driveway. Every few hours, you would get another foot of your front yard or driveway to unload stuff from your home into.

I, in total Tiffany nature, had the video camera and the still camera both going as we cracked open the door.

You couldn't see the hardwood floors at all, there was just this dark, thick, murky substance on everything. There are still may items in my home still with this residue almost four years later. We affectionately call it "flood mud".

The refrigerator was on top of the kitchen table. A pair of my shoes from the closet was at the front door. Tupperware was in every room. Drywall was sagging off the walls. The TV had a water line across the top of the screen. The butcher block still stood strong in the middle of the living room with my couch on top and the rug on top of that, all three of those pieces are still part of my homes décor today, just not on top of each other.

The things that we had "put on higher ground" had all been knocked over or drowned completely. My nightstand was upside down. My mattress still carried half the river in it.

I have never been at such a loss on where to begin with anything in my life. Jason strapped down and got moving faster than I could absorb what I was seeing.

Our neighborhood was still blocked off from the rest of the world, so no family was getting to us anytime soon. But that didn't mean we were alone. People just started coming from everywhere. They were asking what they needed to do, could they not tell that I had no idea! I started a trail of kids helping me to unload every article of clothing that we owned from our dressers and our closet and dump them in the bed of Jason's truck. It was something. Didn't really know what else to do. Jason had men that came by helping him lift furniture out.

My dining room set, that I had paid the last installment payment on only weeks earlier, crumbled to the ground as soon as it was sat in the front yard. My great grandmother's antique couch was in pieces. Its still hard for me to grasp what all we lost that day. I will find myself in the kitchen knowing that I own a pizza cutter, when I all of a sudden realize that I did, but that was pre-flood and post-flood I hadn't repurchased that. The little things like that are always weird. The first grocery store trip was the weirdest. I had never shopped for everything before. There are just staples that every kitchen has. Your salt and pepper shakers travel from home to home as you move with you, but when they are gone and you realize that you don't even have a salt shaker, it is a weird feeling.

From here, I don't remember the amount of time before I saw my parents or my in-laws walk through that door. I don't remember their reactions to what they saw. This is where I get foggy. The next few days and weeks were a lot of deconstruction of my home.

We had built our home only 2 years prior, so everything in it had been new and not ready for a remodel, but it was getting one.

I remember that first night, as Jason crawled under our house to remove the wet insulation, sitting in our picture window upstairs with a shotgun, so scared that without doors, people would just start breaking into our homes trying to find anything that was left. We were very blessed that I never once heard of such a thing happening during that time, but that first night, I wasn't sure of anything. I was a basket case.

Once the drywall came down and you could just see the shell of our house, it was surreal, because a chandelier may still be hanging in the middle of the room with a wall sconce, but no drywall below the sconce or floor below the chandelier.

Within days we had our own port-a-jon in the front yard, thanks to my uncle who understood that a pregnant woman without a bathroom was a bad idea. We set up a make shift kitchen on the back porch and put up plastic and 2x4's on the upstairs bannister so that we could sleep in the house for the days to come.

People were coming by to check on us, many leaving with a bucket of clothes from the back of Jason's truck to wash for me. I think half of Nashville has literally seen my dirty laundry. I had a permanent seat on the front porch where I barked out a lot of directions, because there really isn't much demolition or bleach cleaning that a pregnant person can do and with the state of my pregnancy, no one was taking any chances.

The piles in front of our homes made the streets look like something out of a movie. Everyone's belongings just packed high waiting for the trash truck, which took weeks to come because of the amount of trash being collected. Here is a picture of me (and Will) and our trash pile.

That looks fairly mild to how big the stack really was.

That is almost what I looked like, only worse the morning that the USA Today made its way down our street. It was quiet when they came down. Most volunteers hadn't made it back for another day yet, and I stood in my pj's outside my port-a-jon and thought, this can't really be happening....the world news is going to show a Tennessee hick pregnant at a port-a-jon in her front yard. This is not how I every planned on making the first page of a national newspaper....luckily I convinced them to take the picture inside in what use to be my bathroom. Here is a link to the article that they ran:

http://usatoday30.usatoday.com/printedition/news/20100506/1aflood06_cv.art.htm

It's funny, but as I type this tonight, I went back to re-read the USA Today article, and 3 days after the flood, I didn't even know those other people in the article, today they are part of my "flood family" and I know them oh so well. You really don't know your neighbors until you have no walls and every possession is on the front lawn on display. That is a chance to really get to know some people. I hope that you don't have to get to know yours under such an extreme circumstance.

Maybe the bulk of those days is so foggy because I was being banished to my chair so often, but I will never forget the 100's of people that just kept showing up at our house. The things that people were taking care of for me, it really was a picture of humanity and thoughtfulness that most people don't get the opportunity to see everyday.

Guess how I said in an earlier entry that Jason and I wanted to shut off from the world and make it go away, there was a big lesson here for us in just how we didn't need to proceed through these upcoming months alone and how blessed we were to have so many people to rely on in our lives. Many people were showing up not knowing we were expecting or having no idea about the diagnosis we had just received two months earlier. The love we were shown is truly remarkable and unforgettable. If the days go gray and I can't remember how long it took to take the floors out of the house, I will never forget the feelings of love.

And the water is rising quick

May 1 the water started....we sat and watched a building float onto an interstate...from the comfort of our couch. Yeah, we live on a river, but we checked the flood planes when we moved in and we are way above anything conceivable. The Federal Flood Insurance Agency won't even write a policy for our home we are so far out of the dangers of flooding.....

A day earlier, in anticipation of the great rain coming, we took the time to plant our garden. We wanted to make sure it got to take advantage of this great rain after all.

2:30 am on May 2 and we are in backyard videoing how high the water got. The garden is still good, can't believe the water is where it is, but the house....still not even on the frame of possibilities in our brain, it isn't even raining at this moment.

6:15 am....the garden is gone. There is river flowing over it. Wild? yes. Concern for the home? still no.

8:30 am....reason for concern is growing. The water is rising much faster than we have seen at any other point. Game that I am playing with the neighbor about how fast will it take our little markers was getting way to quick. Jason had taken the other neighbors' baby to a hotel while he could still get out of the neighborhood.

The picture on the right is what our yard looked like by 8:30am. The picture on the left is two years later, but you can see the garden and the piece of wood coming off the tree down at the bottom of the hill is the thinner tree of the two in the middle of the river in the 2010 picture.....well that is my best attempt to give some perspective of what we were looking at....see how there is no river in the 2012 picture. It is WAY down there....where it belongs.

So fast forward, water is still rising really fast. Inside my house breaks out the panic. I refuse to leave the house without Jason. I am seven months pregnant and I refuse to be alone. A neighbor from up the block has come in (we had never met prior to that day) and he can't believe that a pregnant woman is still in her home, so he goes out to call for the boat....yep...the boat. The river (and sewers...gross!!!) had flooded out the street while eyes were on the river. The water was to our porch and rushing. He is trying to help Jason get whatever they can up high or upstairs. All while I am supposed to be packing a bag.....have you ever been completely hormonal and told that you must leave your home, unsure if there will be a return and what that might look like, but before then you have about ten minutes to "pack a bag"....if I would have been of sane mind there would so be a picture of what I left that house with.....remember 7 months pregnant, can't just wear the clothes of any person I come across, so lots of maternity clothes....nope, that would have been too smart.....the dogs very favorite stuffed animal that he takes everywhere....yep, that made the cut. I now have a duffle bag of possessions to my name at all in this world and it includes a stuffed animal for a dog....and a set of pearls. Well now, I am ready for anything. Worst pack job ever!

The boat has arrived, so here I go with the dog and my duffle bag. In that moment, I understood those people in Katrina standing on their roofs because they didn't get out fast enough. It is easier said than done to walk away from your home unsure if you will ever return or to have no idea what you will return to....like how my mind went from thinking no water would come in the house to thinking the whole thing was going to float away....that is how fast the water started rising and just how fast it was rushing. If it was going to keep moving that fast nothing stood a chance! Like the U-Haul that became a boat and took an A/C off a neighbors house before they both raced down the river.

We had great friends that took us in. No electricity, no way out of the neighborhood, no idea what was happening at our home, we cuddled in burly husband, pregnant wife, and dog in a full size bed....and as the last bar on my phone died...this is the text that I see.....

Our house is the 4th from the bottom, with the fireplace. There was no good night of sleep to be had that night....but what morning had in store will have to wait until next time.

Discovery

One of the most exciting days during a pregnancy is the 20 week ultrasound. The first time your baby looks like a real baby, the day you can find out the sex of the baby, if you so choose. It is a thrilling day, especially for first time parents. Around here, we don't like that day, and probably never will again.

It was even sweeter that it fell only 3 days before my birthday. What a birthday gift, I thought. We go in with a young, wide-eyed innocence that was left in the room that day, never to return.

Not long into the ultrasound, we start noticing the change in the tone of the lady doing the ultrasound, the turning of the screen, the whispered talks between her and the doctor. When she left the room for the doctor to talk to us alone, the feeling was this just couldn't be normal.

The doctor tells us that the baby is measuring small, but that their equipment is not as advanced as a specialist would be, so before they make any guesses they want to send us to a specialist...this was a Thursday, our appointment with the specialist wasn't until Monday! We were able to make a tape and find out we were having a boy, but everything became foggy.

We had already invited all of our family over to show the video and reveal the sex. We didn't have the heart to cancel, after all we didn't really even know anything ourselves at this point. So here came our parents, siblings, grandparents all packed into our living room. We showed the video and everyone screamed and got all excited, but we were distant. Barely in the room. We pulled our parents aside as everyone was leaving and you could see in their faces a fear that I don't think I will ever forget.

We told them the doctor had found some discrepancies in measurements and that we didn't know much more than that until Monday, but please pray. They couldn't believe that we had waited so long to say something as everyone had been in our home celebrating all evening, now after everything, I don't think it surprises anyone that we keep a lot to ourselves to not worry others.

So that next day, I go to work greeted by decorations covering my office as they were all so excited to hear that we were having a boy. Remember my birthday was that weekend, so Saturday, we had plans with all of our friends, and still really said nothing much about the unknown that lie ahead for us. The fear that was eating us up inside.

Monday morning couldn't come fast enough. We sat in the waiting room for what felt like forever. When we finally went back, I just kept shaking. The room was so dimly lit. It was like the light couldn't even find a way into this room with us.

In came the specialist and another ultrasound began. A process that became so routine over the next 4 months that I barely even had an ultrasound with our second child.

The look in her eyes was different than our doctors office. Our doctor and ultrasound tech loved us, they had a compassion for what they were about to break to us. This specialist was cold, but she tried to act like she wanted to be your friend. She talked like what she was saying was normal or easy to swallow.

The words out of her mouth were harsh. I know she probably justified it as "the truth" or "what we needed to hear", but I don't wish that experience on anyone ever.

She started telling us about how it wasn't too late to terminate in several states, if we wanted her to start arranging a trip to Ohio or Georgia. A trip??? What was this person saying to me??? Did she think that I was ready to say goodbye to my child?? I was so insulted in that moment. I wanted out of there worse than I have ever wanted out of any room in my life. My body was one given to me by God and a child was a gift from God and I refused to end this child's life one second before the Lord Almighty said his life was over. I was told I was only hurting my own body, that I was a human incubator and as soon as my son was out of this incubator, he wouldn't survive. I was a very sick pregnant person and this person is sitting here telling me that I am enduring it all for nothing. I couldn't accept that anything we go through in life is for nothing.

He was diagnosed that day, but it was not even with the disease he was born with. We walked out that day vowing to never see that woman again. We did end up back at that office one more time a few days before Will was born, but we started going to another two specialist outside of this practice for the rest of the pregnancy. Together we sat at every appointment. Jason never looked at an ultrasound screen again.

We went home a buried our head in the sand. We literally crawled in bed and didn't get out for a week. Our parents eventually came over to make sure we at least ate, but we didn't even turn on lights. We had no idea how to proceed through the next 4 months, if we were even going to be blessed to have a full pregnancy. How could this be happening to us? How could this be true? Would we ever quit crying? What would we say to everyone? How would we handle that look that everyone was going to give us?

Very few people besides immediate family and co-workers saw us for the next two months. We had no plan of changing that, but God knew we needed help. We needed to get up. That we were stronger than we were giving ourselves credit for. That there was a purpose for Will's life and it wasn't to be kept secret inside our quiet little corner of the world. We learned these lessons in a very real way. Almost two months to the day from the diagnosis and two months before his arrival on this Earth, the rain began falling and it didn't stop where it was supposed to....it stopped with 6 feet of water in our house at some places.....but that is where I will start next time....

Confirmed

Well looks like the good Lord confirmed that this was the time and place to share with you all, so guess we will see where He sees this going.

Want to know how it was confirmed....well you are going to hear how anyways. I had two wonderful signs on the drive home from work this evening. The first one were beautiful snowflakes falling from the sky. For those of you who don't know, children with OI are often referred to as snowflakes, because they are fragile and no two are alike. (OI is the disease that Will had, don't think I ever said the name of it in my intro). There is a beautiful poem that a OI mom wrote. I will share, but my love for snowflakes has been well documented. I have a snowflake tree, several that stay up in my house year around, we even used a snowflake instead of a dash on Will's tombstone. They didn't have one in the book that you go through to pick things out for a headstone (hope most of you haven't sat in one of those rooms and gone through the book that I am talking about), but since they didn't we were able to design it and have it uniquely made for just him. One of the things hanging in my kitchen says "Snowflakes are kisses from Heaven" and we couldn't feel that to be more true. So as you see the snowflakes were a big deal today!

And if I was being stubborn and not noticing the snowflakes (since there was just a small flurry of them hitting my car), the song on the radio further confirmed He was talking to me. I am a HUGE believer in the power of music healing the soul and holding the memories of the heart. There are so many songs that take me to so many special places. Today's song was Train's "When I Look To The Sky". This song was released in 2003, so not a song that you hear everyday on the radio 11 years later. This was one of the songs that we played in Will's funeral (See what I mean, the Big Guy was talking to me A LOT this afternoon!!). Why this song, you ask? Several reasons. The first line of this song, "When it rains it pours and opens doors And floods the floors we thought would always keep us safe and dry", when I was 7 months pregnant with Will, the Nashville flood happened (there will be plenty more to come on that I am sure), but losing the entire first floor of your home only 2 months before your high-risk baby is born can be a bit life changing. Another reason is that I went to see Train while pregnant with Will. It was a month after we received the news that something was wrong with the pregnancy and really one of the first times that I left the house. And third "And every dance on the kitchen floor we didn't have before", I loved to pick Will up on his little pillow that he laid on and do a little spin to music (many times even to the music of Train). And fourth, as stated above the connection between looking to the sky and our love for snowflakes just seemed logical.

If you aren't a "signs" person, well I hate that for you, because there is amazing comfort in the little olive branches that God drops into our life, but I have one more story that pertains to snowflakes and Train and Will. I will have to look up the exact quote for a later note, but the first show that we sat down to watch on the TiVo after Will passed, it had been a few days, and we had an episode of CSI:NY that had taped while we were in the hospital. This episode not only played Train's "Calling All Angels" but it also had a beautiful quote about snowflakes. You can't right all this off to coincidence, and even if you chose to, I like the hope that lies in believing there is something more behind it. That it isn't all random chance.

I don't think these blogs will be daily and I don't think they will all be this long, but we will get a groove, I am sure :)

Here is the poem that I promised above:
A Snowflake fell from Heaven one day,
Into my heart, forever to stay.
Fragile and precious, Like china so fine,
Beautiful and delicate and one of a kind.
How can I hold this snowflake so dear?.
What if I break it is my greatest fear.
But hold it I must, and break it I may
But I never will regret the day,
When this snowflake fell from Heaven above,
And in to my heart, stirring such love.
Now, wherever I go and whatever my fate
I am forever blessed
By my beautiful Snowflake

SHIRLEY COLE

And here is a picture of my little snowflake.

Where to start

Oh this is going to be fun....already deleted my first draft by mistake....hope you all are ready for this...

I have toyed with the idea of taking a stab at this for four years. Something about this feels like the time...well felt more like the time, before I deleted my first post...you all will learn that is very much the speed of my life.

I don't know where to start a blog. A great quandary that I have is whether in life you should bring all new friends completely up to speed on everything that got you to this point, just give them the highlights, or spare them the gruesome details on how you became the person they are meeting today. Well I will give you this warning this one time, I am an oversharer. I can't even tell you how many people I have ran off by my stories. Maybe it is because they aren't all warm and fuzzy, maybe it is because I flat out talk to much, or maybe they just don't want to chance jumping on this ride with me! I probably will never know, but I am tickled that you have taken the time to at least dip your toes in and see what this crazy life I am talking about is all about.

Well I wasn't happy the first thing that I had to do to start a blog was to name it. Can't I have some time to see where all my rattling goes? I read somewhere it said, "well since you already know the theme for your blog"...oh do I now? Ladies and gentleman if you came along for a well laid out, well themed and planned blog, go ahead. spare yourself another minute and hit next. I would love to say that I promise it will be fun, but since I have no idea what I am doing, I will make no promises tonight.

The Lord and I have always been close, closer since he knocked me out at the knees and taught me a little more about what it means to be in the moment and relying on him. (Maybe that is what I am here for, to help you learn that without a baseball bat from the Big Guy to your knees....my blog will be better than a baseball bat, there I made one promise to you...happy yet? I told you to run while you could....) But I can tell you He has a sense of humor and my life is a really good example of that. I was that girl that thought plans and schedules would get me where I needed to go...well He laughed. The old quote goes, if you want to hear God laugh, tell Him your plans. Well I am not a preacher and I am far from a saint, but I definitely have some stories about God setting out a different plan than me.

Man, see this is where I need that "theme", I set out to tell you how I named my blog and two paragraphs later I still haven't gotten there...phew! Back on it. "Someone stronger than me" comes from the fact that people are always telling me that I am the strongest person that they know, and I just think I am a person living life day by day and surviving with what I am given. I try not to take a bitter approach. My philosophy has always been to laugh to keep from crying (was even quoted in the USA TODAY with that line!) I have learned that life is too short, and you got to find a lighter side to it all. But the stronger than me is my dear firstborn son, Will, and the Good Lord Almighty.

As you can guess from twigs2boys, I put a lot of emphasis in my life on my two boys. And even without a theme, I can promise you the stories of my life since I became the mother of these two will be a lot of what is coming at you.

Quick version (the whole story is what you are here for anyways, right?) Will was born in 2010 with over 70 fractures. They were at many different stages of healing, and he was in no doubt an amount of pain that most people can't comprehend. All the while, he barely ever cried. He was a happy baby, with bright blue eyes that stayed locked on the world around him. It was as if he knew that his time on this Earth was limited and he needed to make the most of it (a life lesson that I strive everyday to keep alive in his memory). He only survived on this Earth a little less than five months, but made a lasting impression on so many. He was strong, not me. In his final moments on this Earth, he held my hand, not the other way around. He had a short time to make a big impact. I think his impact is still on going to this day and a big part of why I feel led to start this very blog you are reading tonight.

I know the website says 2 boys, and trust me we will talk about the other one....and more about that sense of humor the Good Lord has. See after losing Will, I thought more children would be very far down the road.....did I mention, I don't make the plans around here. My rainbow baby was here 9 months later and boy is he full of.....well something....

However you happened upon this, I am glad that you decided to check it out and I hope you will stick around.....should be fun to see where the road will lead.

I leave my first blog with the note that I made to myself at the top of a notepad three years ago,

"God doesn't give us more than we can handle...sometimes we just sell ourselves short on how strong God knows that we are."