5 years ago...

Do you know where you were five years ago this minute? Do you know what you were feeling? thinking? Can you feel it? See it? Smell it? I can. These are the hours that changed my life forever. This was a moment that defined me to the core. A memory that holds me in place for all of time.

There aren't many things that can hold you the way this day holds me. There aren't many memories that can capture you for a lifetime. Losing a child, that is a moment that never leaves. The moment never goes gray in your memory files. Now I am sure there are specifics that have left me in five years. There may even be some facts that have distorted, but I am pretty sure time stood still more than once that night.

I am beyond blessed that I didn't sit in that room alone. Not a member of my family went to sleep that night. Our best friends slept on hospital floors. They too were being changed forever.

I have said many, many times, but it is the moment I can't forget, the moment I most wish I had caught on a camera, so I could hold it outside of my head. It's the time that I spent with my baby boy curled in my arms and I was falling apart. There was nothing left in me, but in those moments, my baby boy held his little hand wrapped around my finger. The little fist that he almost never opened, that night held me close.

To start at the beginning of this part of our story. To tell the whole story from this hospital stay, I have to go back a few days.

December 1, we had spent until well into the wee hours of the day stringing Christmas lights, watching Christmas specials, taking pictures, never knowing this was our last night at home with our baby boy.

We had been at the hospital the week before, but we had come home and were so hopeful that things were getting back to normal. We were worried about Christmas cards and lights. We were busy with the season. We wanted baby boy to have the best first Christmas. We never thought he would never have a first Christmas.

After everyone left things took a turn so fast that looking back you question how you should have known something sooner, you should have strung less lights, worried less about how the Christmas card was going to look. There was no way to know how fleeting our moments were. Things took a turn so fast that none of our parents had even reached their homes before turning back around to our house as they received frantic calls from us.

My husband is one of the few people in this world that has actually had to save another person's life. I mean there are many of us that learn ways to save and protect others, but as a lifeguard for many years, he hadn't just taught life saving classes, he had at one point pulled a man from a pool and administered life saving CPR. Once in a lifetime that is an overwhelming task, but that night he had to administer those same life saving skills that had saved a man he didn't know, and he had to use them to save our child. His first born son was lying their needing his daddy to save his life. He stayed so calm, there was nothing calming in my nature that evening, in my mind I remember being a mess, so I don't even want to imagine what the reality of how out of it I was.

I can tell you that we did leave the house via an ambulance and that I didn't know if when we gave our son over to the paramedics if we would ever hold him alive again on this Earth. I didn't think that we would make it to the hospital. Then at the hospital, we got out of the ambulance and the paramedics still were giving him a chance. Another whirl of foggy comes over me and I remember standing outside the glass sliding doors as the woman ER doctor asked us questions and tried many things. There were SO MANY doctors and nurses surrounding our little boy that I wasn't sure if he was really even in the middle of this loud, chaotic motion that was happening in front of me.

This lady (I am sure she is an outstanding woman and doctor, I mean you would have to be to work in a Children's Hospital Emergency Room...but in that evening, she was "this lady") tells us that she is going to have to put him on a ventilator. I lose it all over again....not that I really pulled it together to lose again, but I never believed that Will's very weak bones could survive the procedure involved to put him on a ventilator. I truly believed in that moment that this doctor had just looked at me and told me that she was going to step inside this room 2 feet away from me and kill my son while I watched. That is what I heard in that moment.

She comes out...I have no idea what the actual time that passed was at that point...and gives me an update. I have NO IDEA what she said. I was in so much shock that my little boy was still alive that I heard no words that anyone spoke to me at that point.

We were eventually moved out of the ER and taken to the PICU. The exhaustion at this point makes things very patchy...maybe one day we can get Jason to write down what was actually happening, because God has gifted him with a much sharper memory of the timeline from here. I do remember learning that in the PICU only one person could sleep at a time. So if both Jason and I were going to stay with Will, which there wasn't anything that could have taken either of us out of that room, I almost had them bring me a bed pan it got so bad (I didn't change out of the clothes that had on December 1 at our house until after we made funeral arrangements late afternoon  on December 4) one of us had to stay awake. Will never slept much and with this vent in his throat that he wouldn't leave alone, there was no sleeping for him anyways, so we took turns sitting beside his bed talking to him and reading to him. Those big eyes were so very tired. They looked at me with so many questions as he was way too young to know what had just happened to him and where he was.

Within about 24 hours of being on the vent, he was breathing stronger and the vent wasn't needed. That is when the meetings started. That is when we were asked to step away from his bedside. That is when I sat in a room feeling my world yet again falling apart. We were being talked to about a DNR (Do Not Resuscitate). We were being told that once the vent came off, he wouldn't be strong enough to have it put in again. We were being told that if another spell happened like what we just had had happen we would have to say goodbye to our son. These conversations are hard to even think about and still the source of so many questions and what-if's for me and Jason, but as I have said before, I have to find peace in the fact that my God had a plan for my baby boy bigger than any decision I made sitting in a conference room with a bunch of doctors.

The vent came out. Hopes were still on the rise. We had no idea what the lasting impact of the last few days would be in his life, but we still never believed that his life was coming to an end. Maybe we were in denial, maybe we were being naïve, but we were still full of hope. I can still picture looking out our window and seeing all of our family and friends in the waiting room. I didn't want to leave my seat next to Will, but I remember the waves of support and the prayers that I saw for us through that window.

I don't remember the exact moment that we knew that we had entered the beginning of the end. I know that late on the 3rd/ early on the 4th the end had come. The looks from the hospital staff that came through our room that night were grim. Our nurse had been with us for most of the time that we had been in the PICU this trip and he was amazing. When the hours came to say goodbye, I remember him coming in and turning off all the stupid machines that beeped in our room. He said that he could monitor what he needed to in the hall and that we didn't need to be staring at a screen and having a constant beeping giving us the play-by-play of our last moments together.

Again, Will fought. Even after those machines were turned off and the family piled in the room, we were gifted hours, not minutes as the staff had prepared us for. He fought. His whole life, he fought. In the last moments, I remember Jason telling him it was okay that he didn't have to fight anymore as he stared into his daddy's eyes. I still, as his mother, yearn to be the one that felt the pain, I yearn to be the one that had to fight that fight instead of having to watch my child endure the pain. I am his mother, it is instinctual to want to protect them and make their life pain-free.

So today is the anniversary of the day that he held my hand that last time. Today is the day that I am most jealous of the angels who sit next to my son. Today is the day that I live in that hospital recliner chair in the PICU holding my little boy.

Today is the day that changed me forever.

Each day of our past molds us into who we are, and it isn't often that we are changed by sudden, sharp indentations in our soul, but on this date that is exactly what happened to me. Now I am challenged with taking that scar and the days that I have left and making the most of it for God's glory. Making my child's short time on this Earth make an impact that far exceeds the time that he was blessed with.

Snowbows and Signs

So I realized something tonight and while the date that this will actually happen is still two weeks away, the Lord has put it so heavy on my heart, there is no chance I am sleeping before I write.

As most everyone reading this knows, my sweet son Will was taken from this Earth way to early. He left this Earth two days shy of his 5 month birthday to be exact. I hate looking at pictures from the hospital, but I will share one here. This is me and my sweet baby about a day and a half before he passed. That story is not the one that I am ready to share still about those final days. Some day I will put it into beautiful words, but not today.

Today, I will share with you how my Loving God has shown me that He was with me, He is with me, and He holds my son tight every night until we are together again.

So since Will was 2 days shy of 5 months when he passed, this is a "milestone" that is hard for me to approach and handle for each of my other children. There is no cute sticker picture for this day, there is just heartache and loss.

 

When we reached this "milestone" with Evan, God sent me the most amazing "sign". He sent me a snowbow. If you have read before you know that we use snowflakes as our symbol to remember Will and rainbow baby as our symbol for Evan. For a quick why, the snowflake is fragile and only here briefly, but has such beauty in that time, the rainbow is God's peace offering as the storm is ending that He is here and with us and will provide. A Snowbow is a Rainbow in a snow storm. They are unique and unusual to say the least, but that February morning, God put one over my house as He held us a little tighter that day. This is a picture of my house with the snowbow over it taken from my neighbors window.

I am still blown away by that perfect timing of our Creator, but of course, these are all things that I have know and could have easily gone to sleep tonight without typing about tonight. What has kept me up this evening is the realization of what God has yet again done in my life.

I was thinking about how the twins were quickly approaching this "milestone" day, but I hadn't really thought about what day on the physical calendar it would fall until this evening. Ready for it???

Two days before their 5 month birthday is my 7th wedding anniversary! Pretty amazing, huh? What a cool way for God to show me that it is all going to be okay and that he has a plan for my crazy life. I am a numbers person, I love signs, and "weird" facts like this and am so floored. You can choose to tell me that I am reading into things or even believe that everything happens by chance, but I choose to believe that God is showing me that my family is perfectly built the way God wanted it to be built. What an amazing hug from Heaven. An anniversary gift from the one who brought us together and gave us these wonderful children.

Now, don't get me wrong for one second, there have been MANY moments that I have cried out to God for taking my child, for not letting me have him longer on this Earth. There is a pain that won't ever go away. There is a part of me that is bitter that I will never have all of my children together on this Earth at one time.

I mentioned earlier being a numbers person, my brain just calculates everything in statistics and assigns numbers, I know I am strange, but if your brain doesn't work that way, this will probably make no sense to you. My whole life, growing up in a family of 3 kids, I always wanted to have an even number of children. I didn't want their to be a "middle" or an odd man out. I wanted my children to be able to pair up and fight it out. I now sit here with 4 children and never for one single day in my life with these 4 children have I had an even number of children in my house to raise and care for. I went from 1 to 1 to 3....see what I mean, God likes to mess with me. That is one of the many times that he has reminded me that this is his plan and I am simply along for the ride.

I always claim to be a Type A personality who likes to have it all planned out and in order, but I have become much more laid back when it comes to the large scheme of life because my Maker has shown me countless time and countless ways that He makes the plans here. I know it is a cliché saying, but my life is proof that it is true, " If you want to hear God laugh, tell him your plans!"

Again, I don't know why this was so heavy on my heart to put down in words tonight, but like most things that I have gone through in my life, I may not know why I am called to go through it, but I know that it is not by mistake and it is not without direction from someone who has it all figured out.

 

 

Twins....excuse me, what did you say!?!?!

While there is still more to share of Will's time on this Earth, there is so much current craziness in our house, that I might not be as chronological as I have been going forward.

We have called Evan our Rainbow Baby for sometime now, because we were not planning on having another baby right after we lost Will, but we didn't get to make that choice. God and Big Brother Will had a conversation about what we needed in our lives and that was Evan. A Rainbow Baby is a baby that brings you God's promise of blessings from the storm. The storm isn't over, but you can start to see the light and the goodness that can come from the storm. These are the special children sent to families after the loss of a child.

I think that I spent most of Evan's pregnancy in a blur. I was after all mourning the loss of Will and on top of that being so sick barely a year after I had delivered Will again, I think that most of my memories are just void during that time.

What I didn't forget about that time was the nauseous feeling that takes over my body when I am pregnant. It is a really hard feeling to forget. It starts the day I become pregnant and doesn't leave until the baby has been evacuated from me!

People often asked in the 3 years after we had Evan, if and when we would have more children. It often depended on the day as to what my answer was to that question. I honestly didn't know how I felt and what I wanted. I did know that God had a plan and I was ready for whatever he deemed as the next adventure for my family.

I told people that I was torn. I know every child is different and parents always wonder if they have enough love to love more than one child and how additional children change the dynamic of their family, but I had had a wonderful, beautiful child who was called home to the Lord way to soon and a very special angel sent to me from Heaven to pull me out of a darkness that was unbearable. How would I just plan on another child and have just a "normal" addition to the family. We don't do normal well around here, if you haven't figured that out.

Well I was still torn, but I wasn't getting any younger and neither was Evan and I knew how much I love having siblings and so does Jason and we couldn't bare Evan not to have that experience on this Earth since he wouldn't have the opportunity to meet his brother until he is one day called home to the Lord, which we pray is a very long time away. So we decided not to necessarily "try", but to quit "not trying". It didn't take but about a month after we made this decision for God to again bless us with another positive pregnancy test.

I knew I was pregnant before I ever went and bought the test. Again, the sickness feeling is unmistakable! Jason had gone out of town for the day with his dad and I had met some friends for dinner. On the way home, I drug Evan with me into our local Walgreen's and bought the test. It turned positive much quicker than I expected since I wasn't even late yet. I couldn't even wait for Jason to get back home that night, I called him and asked if he was ready to do this all over again. For us, pregnancy is a dreaded, terrifying stream of doctors appointments where you hold your breath that someone is going to tell you that your greatest fears have come true again and you will have another child with an illness. There is no joy in the process for us.

I scheduled my doctor's appointment to confirm what I already knew. The doctor didn't let on at that time that he noticed anything of concern. Probably because he knew the above that me and Jason don't enjoy these processes and he didn't want to bring any unneeded worry to our lives.

It wasn't a few days after that appointment that I started spotting and I was feeling 10 times worse than I was even use to feeling while pregnant. I had another appointment scheduled soon, so I thought about brushing it off, but the doctor told me to come on in. I knew something was "wrong". I told Jason just to stay at work, it was so early in the pregnancy and the only thing that I could think that would be causing this much of a different feeling was to have lost the baby. So off I went to the doctor, my first OB appointment ever to go to by myself. I went in to the ultrasound room, a room I was all too familiar with as it was the same room we had first learned of Will's problems. I sat there knowing the face of the tech and that something on the screen wasn't "normal". When the doctor walked in, I just started crying and said, "I lost the baby, didn't I?" He looked at me and all but laughed at me and said, "Not quite..." In that split moment my mind was swirling, what is he even talking about...then he turned the screen to me and said, you feel like this because...well, there are two in there...you are having TWINS!!! I said, "WHAT?!?!?! You can't tell me something like that when Jason isn't here with me!!!"

I waited until I was in the car to call Jason. Still unsure how to tell him this over the phone, but sure that I wasn't going to wait until he came home. I sat in my Jetta and laughed. Called him and said, "well we have to sell my car....the Jetta isn't going to work anymore...". He was confused, much like I had been just moments ago. I let him know that I had not miscarried but in fact we were having 2 babies!! He was excited from the moment that he heard the news!

Remember I said we don't do normal well. I had struggled for many years on how to just have a "normal pregnancy" with a "planned child", and God had heard my struggles and again told me to just trust in Him. He knows what is best for me and my family and He is in control. So with that, we were yet again not going to have that "normal pregnancy" and instead of a planned child, God sent us two beautiful gifts to fill our home! Blessed times two!

To Vandy...and home!!

Where I left off last time, I had just held my baby doll for the first time. We stayed there at Baptist for another couple of days. During that time, we were presented with kind of a crossroads. There were two offers put in front of us. There was a doctor at Vandy that had a suggested treatment that was supposedly in a very new phase that he thought might bring Will some relief. The other option was to be released on Hospice care.

We put a lot of hope in what we were offered at Vandy, but those days were not what we bargained for once we got there. The doctor, once seeing Will, back tracked on all his promises. He wasn't willing to try anything. He was extremely discouraging. His partner went as far as to tell my mother and mother-in-law to essentially talk some since into me and Jason and have us pull the plug on Will and our hope. We lost all of the progress we had made at Baptist and weren't happy there at all.

My biggest frustration to this day, is that there was a doctor in this very hospital with many OI patients that were having tremendous results with a completely different treatment. I was hearing how this was so rare and there was no one that could guide me and there were no other families like us, and just a few floors away in the hospital sat those families and that doctor. It would be over two months later until I made this discovery, all without the help of any of these doom doctors.

Another reason that I hold a lot of hostility for this time and this doctor team, no lie, once I had been home with Will for a few months, I received a phone call from this doctor. He started as someone that wanted to check in, make sure that I had received my DNA results that confirmed it was Type II, but before that conversation was over, his true intentions came to light. This phone call was to see if my child was still alive. When he discovered, we were still at our home with him and he was thriving, the shock in his voice was unable for him to hide. This man who had told me to pull the plug, was in utter shock to find my child still alive and I was once again offended by this man calling me to see if my child was alive!

Once we made the decision to take him home, there was a lot more to come along than a release from the hospital. We had to learn how to work oxygen machines, how to change out feeding tubes, how to get him out of a hospital bed and travel across town...there are not new parent classes for what we encountered next.

It wasn't until that day that I learned there was such thing as a "car bed". This is a car seat where the child actually lays in a bed like seat. I also learned that day how many bumps were in the road between my house and the hospital. Jason and I drove with the flashers barely breaking 15 mph home, because I knew that one simple fender bender would be more than my child could sustain.

At our home, there was an amazing team waiting on us. The Hospice nurse, social worker, and the medical supply guy were all there ready to help us in the house and with our, "okay, what now" moment.

We put Will in the cradle that Jason's grandfather had made in our bedroom. Other than that cradle, there was a box spring, mattress, and oxygen machine. We quickly brought in a rocking chair, the one that Jason had been rocked in as a baby by his grandmother.


There were unpainted doors hung and no furniture had been purchased since our bedroom suite was destroyed in the flood. There was no pretty homecoming into this perfectly ready home for this new baby. There were two terrified parents in a half empty home scared to death about what we had just taken on. All we knew was that home meant, no visitation hours, no negative attitudes. Our child was surrounded in love and prayers by not just us but every member of our family and friends that came through that hall. We didn't know how long we would have at home, but he was there and we were ready to make memories of seeing our child in our home and outside of the beeping halls of a hospital.

There were boxes of books brought in, where we would sit and rock looking at this sweet baby boy and read every book again and again to him.

We eventually grew in courage on what we could do with him and what our life could look like even in the walls of our bedroom and our home. But those initial days, we all just adjusted and tried to catch our breath. Our baby was home. This was something so many had said wouldn't happen. We knew God had allowed us to bring him home and that there is power in being surrounded by people with faith...faith in God, in Will, in me and Jason.

This trip home wouldn't have been possible or even imaginable by us if it hadn't been for our amazing hospice team. The group of ladies that surrounded us are amazing women who I think of often. They sat with me during some of the longest days of my life. They were there for my child, but they were there for me and Jason as well. I will always hold a very special place in my heart for the people that give their lives to helping others during such dark days, and the ones that take on that tasks with families of sick children are truly angels on this Earth.