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Tuesday, May 31, 2011

05-31-11 / Hebrews 11 – Living a Memorable Life….

05-31-11 / Hebrews 11 – Living a Memorable Life….

This past Sunday was a sermon that was aimed right at me. I know it was meant for the men and women that serve our country but I took it as a sermon meant for my Thomas. As soon as the pastor said he would be preaching on how to live a memorable life, I couldn’t get my baby boy out of my head. He read from Hebrews, the entire 11th chapter to be exact. I have to admit my mind wandered from time to time as he was reading but for the most part I followed along. Most of what he read didn’t really apply to Thomas directly but as he summed things up, it became abundantly clear to me what type of person my boy is. There came a point in the sermon where the pastor said there are 3 types of people and that we all fall into one of the 3 categories.

The person you try to forget – This is that person in your life that you wish you could wipe from your memory. This person has done nothing but cause pain and anguish to you or your family. For obvious reasons, you would not wish to be this person, but the sad truth is; there are plenty of these people in our lives.

The person you accidentally forget – This person is the one that has gone their entire life and made so little impact that you forget them on accident. Personally, I don’t wish to be this person either. I would hope that I have impacted someone’s life enough to be worth remembering.

The person you simply cannot forget – This is the person that you couldn’t forget even if you tried. This person has lived a life that is not only pleasing to you but one that is pleasing to God. This person has made mistakes, but has been humble enough to beg for forgiveness of those mistakes.

Figuring out which category you belong to might be tough, I’m sure those around you could assist you with that. I couldn’t say which category I belong to but I can say, without a single doubt, my Thomas is a person that people won’t easily forget. His little 3 day life impacted more people than mine ever will. I was beaming with pride throughout that entire sermon and left feeling so fulfilled; I am more than aware that the sermon was not about my baby boy, but it felt that way to me. As I struggle with the daily task of finding things that uplift me instead of bringing me down, Sunday was a day that I just felt uplifted.

That evening I received a text from my mom asking if I knew who had placed some purple and yellow flowers, a stuffed puppy and a note at Thomas’s grave; I hadn’t the slightest clue. None of our friends had mentioned going by there and we hadn’t put those items there either. Last week, Aaron and I had taken a garden butterfly and a solar powered lantern out there (so Thomas would never be in the dark), but those items weren’t there at that time. They had gone by there on Sunday to see how the grave looked with those things we had placed there and the flag that one of our family friends had placed out there for memorial day; that’s when they noticed the new additions. She sent me a picture of the grave and then a picture of the sweet note that was left; I was hoping to recognize the handwriting but neither of us did. The note simply said, “You are an angel that we have only met through your mommy. Rest peacefully little Thomas, we will always love you.” It was driving me crazy that I hadn’t the slightest clue who had left such a sweet message for my little one so I decided to resort to Facebook; I simply asked that the person that had left it please let me know who they were; she was kind enough to email me a little while later. The girl that had left this sweet gesture for Thomas was a girl that neither I, nor Aaron have ever met. She is just a precious soul that has been faithfully following our story. In her email she stated that she didn’t want to freak me out by leaving something there, as she was a perfect stranger. I shared with her that it meant so much more to me that it was from a person that had never met our family. I hope to find more things like this out there from time to time, from perfect strangers or those that know us well. After hearing the sermon on Sunday morning, these tiny gifts from a perfect stranger confirmed my thoughts about my Thomas and his life; he is certainly the type of person that you simply cannot forget; even if you only met him through a little blog that his mommy has written.

Thank you for loving my little angel!

Thank you for this! You know who you are!

Thursday, May 19, 2011

05-19-11 / Gut Wrenching Pain…..

05-19-11 / Gut Wrenching Pain…..

Tomorrow marks the 3 week anniversary of the first time I held an angel. I cannot believe it’s already been 3 weeks, part of me feels like it was just yesterday and the other part of me feels like it happened years ago; very hard to explain. It seems we have stayed so busy during these last few weeks that we haven’t had time to “think”. The house is becoming quieter and life is going back to “normal”, whatever that means. We are beginning the rollercoaster ride of grief all over again. When will this end?

All day Tuesday my thoughts were consumed with Thomas. I’m beginning to feel angry when people tell me he’s with me all the time. I don’t want my baby to be “with me all the time”, I want him to be here in my arms and physically with me! I don’t want to think of my baby in a spiritual sense, I want to be able to kiss him, squeeze him, hold him, love on him, change his poopy diapers, complain about not getting enough sleep, place him in the bed with his daddy, brother, puppy and myself so I can later say I wish I hadn’t created this monster; ultimately, I long to be his mommy and to be the one that makes his world spin. I long to be the one he runs to when he’s sad, hurt and most of all when he’s so happy that he can’t wait to wrap his arms around my neck and show me that he loves me. I want to be happy just imagining him playing with Jesus and the angels, but that’s just not doing the trick at this point. I want my baby back. I can remember at one very low point in the hospital, sobbing in emotional pain and yelling, “I want THIS baby, I don’t want to have another baby, I want THIS one!” I realize I was behaving like a spoiled rotten child, but I truly felt like lying on the floor, kicking and screaming at God for choosing my baby to take back!

By Tuesday night I was ready to just crawl in my bed, bury my face in my pillow and sob. Aaron passed out long before Aaden and I could, we had taken a late nap that was haunting us at bed time; we couldn’t sleep to save our lives! Aaron is a sleep talker so when I heard him mumble the word “seizure” I tuned in. I knew he was dreaming of Thomas but I had no idea how bad it would get. He began saying, “it’s ok, it’s ok” over and over again in the same tone he would use when we were comforting Thomas through a seizure; I knew I needed to wake him up. Before I got over to his side to wake him, Aaden had already rolled over there and was snuggled up to him holding his hand. When I woke him up he was breathing so heavy and was in a state of panic. I told him he was talking in his sleep and he burst into tears and began to express to me how vivid the dream was. I have been complaining because I haven’t had any dreams of Thomas at all since he passed, but if my dreams are going to be like that I don’t want to have them.

Wednesday was torture. I was fighting back tears every single time I turned around. I know people say I need to grieve and get it all out, but everyone has to realize that I still have a 3 year old here at home that doesn’t quite understand this ride we’re on. I’m trying to hold it together for him. I spent most of the day looking through his pictures. I found a video on Aaron’s phone that I had completely forgotten about, it was one from the Saturday after he was born, he was sucking a pacifier; I couldn’t stop watching it. We had taken Aaden to school that morning since it was his last day for the year and decided we would make a run by the cemetery. We waited until after we picked Aaden up to go out there and I’m not sure that was the best idea. When we pulled up he asked us where all the people were, his last memory of that place is one filled with tons of people and he didn’t understand why they weren’t still there. He kept asking why we were there and I finally said, “we’re here to see baby Thomas”; huge mistake. He lit up! He was so excited to see baby Thomas and kept saying it over and over. As I was saying the words, “we’re here to see baby Thomas” I knew it was the wrong thing to say but I just couldn’t stop myself. He kept saying, “where is he mommy, I want to see him”. I didn’t know what to say to him. How do you explain to a 3 year old that his baby brother has passed away and we can’t physically see him?? It’s impossible to do!! I quickly said, “I’m sorry baby, I was wrong, baby Thomas isn’t here”. He threw a fit! He wanted to see him and he began demanding that I produce him! It took all that was within me to hold it together because, honestly, I felt the same way! Once we got to the area where Thomas is buried, Aaden immediately started climbing on the Jesus statue and Aaron and I began to clean up around the grave. The flowers that were left there after his service were dead and needed to be thrown away. I knelt down by his grave for the longest time and fought back tears. I never pictured myself as one of those people that would sit and talk to a grave, but I find myself wanting to talk to him. As I was kneeling there I had an overwhelming urge to start digging; crazy, I know, but I did. I just kept thinking that he’s not that far away, I could dig him up and hold him one more time. My hands were literally on the grass over his grave, burning to hold him.

That night was almost more than I could bear. I found myself tearing up at everything. I just needed a good cry. I climbed in the bathtub and sat in the hot water just crying and looking at his pictures. When I was finally ready for bed, Aaden decided he would come to bed with me; as we were lying there he was being ridiculously silly in an attempt to avoid sleep. I turned away from him for a bit and started sobbing, he had pulled the pillow case off of Aaron’s pillow and had stuffed himself into it and was calling himself a ghost. In the middle of his silliness, he apparently heard me crying; I tried to be quiet so he wouldn’t hear me but I wasn’t successful. He stopped in mid sentence and said, “are you sad mommy?” I turned around and said, “yes, baby, mommy is very sad”. He instantly crawled out of the pillowcase and into my arms and squeezed as tight as he could. He never said a word, he just snuggled me while I cried and twirled my hair until he went to sleep. That warmed my heart and made me so proud. My little boy can be a handful, he can be stubborn and he hates to share, but he has a big heart and he loves his mommy. Aaron finally came to bed after his shower and I asked him to put Aaden in his bed for a bit. When he crawled back in with me, we just held each other and sobbed. I expressed to him that I am in physical pain, my body is physically aching to hold my child. He was a part of me for 36 weeks, while he was on this earth he never left my sight and now I can't do the one thing I need to do; hold him. We cried ourselves to sleep, wondering when we would feel happy again.

Today was a better day. I woke up with pink eye, which is a bummer, but all in all we had a great day together. Tomorrow will be hard on all of us. Aaron has been off work for 3 weeks now and tomorrow is his first day back. I know he is dreading it and so am I. We know that life must go on, we know that things have to get back to “normal”; I just don’t know if we know what our “normal” is yet.  

Saturday, May 14, 2011

05-14-11 / On A Happier Note……

05-14-11 / On A Happier Note……

I am so proud to write about a sweet little boy named Tyler. Let me start off by saying that there is a Blog in the works that I call my “Thank You” Blog. I am sad to say that I haven’t written thank you notes; I’m afraid I won’t get around to being able to write one to each person that deserves one. I have had more help on this journey than any person could dream up and I wish I had a way to thank every person that played a part. I have every intention of addressing each person through my “Thank You” Blog, but I felt this special person deserved his very own spot.

I am around children all day every single day, whether it’s at home or at my job. I see the selfish behavior and the self-centered desires of their hearts; we are all born this way. It says so much about a parent when you come across a child with a giving heart, a child that gives from the right place. My parents were those parents, they taught us to give from our heart, expecting nothing in return. It’s very refreshing when you come across other parents like this, but even more refreshing when you encounter their young children.

I was made aware of this particular little boy, Tyler, shortly after Thomas passed away. I was a bit fuzzy on the details of what he was wanting until we received a letter from his mommy in the mail; accompanied with letters from him. I believe Tyler is seven years old and is clearly a hard worker. His school was hosting a blood drive and he won a prize for being the kid to bring in the most blood donors. That gift was a $50.00 gift certificate to none other than Toys R Us; the best place on earth to any kid! I would have been beside myself if I had won such a fabulous prize when I was his age!

Tyler was somehow made aware of our situation. His mommy stated that he had heard of us and of the auction that was taking place for our family, but she didn’t feel he really understood it all. She explained that when he sat down and saw the pictures of Kamryn and Aaden holding Thomas he began to cry. As any mom would do, she then began to cry and asked him why he was crying. He told her, “it’s just so sad” and continued to say if it were his little sister, the gift card would make him feel better. This precious little one sent his $50.00 gift card to my children along with a note to each one of them.

People keep sharing with me what an example and inspiration I am, but examples and inspiration come in tiny packages too. What a selfless thing for this little boy to do, without prompting or pushing from any adult, he gave all he had to give. There is much to be learned from Tyler. Most adults don’t give like that; we always find a reason why we can’t afford to give or ways that we might need it more than the next person. This child, not knowing our family at all, gave until it hurt. I would love to be more like Tyler!

Thank you, Tyler, for being an amazing young man! I know your mommy is proud!

These are the precious notes that he sent my children, these will be cherished in the Thomas keepsake box forever!!

05-08-11 / Mother’s Day 2011 – First one without Thomas….

 05-08-11 / Mother’s Day 2011 – First one without Thomas….

I had no idea when Mother’s Day was this year, when I found out I was a tad bit devastated. I had no idea that Mother’s Day was going to be the day after we planned to bury our baby; I just knew it would be the worst Mother’s Day ever. I really began to dread this day as much as I dreaded the funeral services. While every other mother is celebrating their children, I was going to have to find a happy medium between celebrating mine and mourning Thomas; seemed impossible. I honestly didn’t think we would make it to church, but Aaron had it in his head that we were going so we did.

 We arrived to church early, 10:56 to be exact. We’re normally running into the childcare area to check the kids in and then briskly walking into church around 11:15; got to thinking maybe this was a good sign that we were so early on such an important day. I have never been to a different church for Mother’s Day, I’ve always been at my parents church, sitting with my mom; just couldn’t do it this year. I couldn’t face everyone at their church and then listen to my dad talk about honoring mothers when I had just said goodbye to my son. We walked into the service and the music was already in full force, our favorite part of our church is the music; today was no different. I was doing well, holding it together until one of the ministers got up to invite two families to the front to dedicate their babies and to say a few little words about mothers. As he began to pray, he prayed for those moms that were celebrating their first Mother’s Day with their babies and then those moms celebrating their first Mother’s Day after the loss of their baby; I lost it. It was more than I could take. Never in a million years would I dream that a prayer like that would be directed at me. Never did I think I would be one of those moms celebrating my first Mother’s Day without one of my children; it broke my heart that he was praying for me. Once his beautiful prayer had ended we were able to sing a few more praise and worship songs and ended with “Jesus Paid It All”, which was one of the songs they had performed at Thomas’s service; the water works started up again.

As Brother Nathan got up to speak I wasn’t sure how his message would speak to me. Would it leave me sad? Would it make me happy? Would it make me appreciate what I have instead of focusing on what I’ve lost? Would I even be listening as he spoke or would my mind be elsewhere? I almost didn’t want to listen, I almost wanted to climb back in my car and put my hands over my ears like a toddler, but I didn’t. I can’t say many things stick out to me about that service except this little “story” that he read. I’ve heard it many times before, but this time it ripped my heart out.

A baby asked God, 'They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?' God said, 'Your angel will be waiting for you and will take care of you.'

The child further inquired, 'But tell me, here in heaven I don't have to do anything but sing and smile to be happy.' God said, 'Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy.'

Again the child asked, 'And how am I going to be able to understand when people talk to me if I don't know the language?' God said, 'Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak.'

'And what am I going to do when I want to talk to you?' God said, 'Your angel will place your hands together and will teach you how to pray.'
'Who will protect me?' God said, 'Your angel will defend you even if it means risking its life.'

'But I will always be sad because I will not see you anymore.' God said, 'Your angel will always talk to you about Me and will teach you the way to come back to Me, even though I will always be next to you.'

At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, 'God, if I am to leave now, please tell me my angel's name.'

God said, 'You will simply call her, 'Mom.'                      

You can imagine why this particular “story” would set me over the edge. Let’s pretend that babies do have this conversation with God before they are sent to heaven; how did that conversation go with my Thomas? Did God tell him that he would only briefly meet his angel/mommy and then go straight back to heaven? I didn’t get the opportunity to fulfill all of these things that are spoken of here, but there are a few that I had the honor of fulfilling. God said, “your angel will be waiting for you and will take care of you”. I was waiting, looking forward to meeting him and I took care of him the best way I knew how. I, along with his daddy, loved him in the good times and the very bad. I can only hope that was sufficient. The child further inquired, “but tell me, here in heaven I don’t have to do anything but sing and smile to be happy.” God said, “your angel will sing for you and will also smile for you. And you will feel your angel’s love and be very happy.” I did sing to him, I sang “Hush Little Baby” because Aaden still loves for me to sing that for him. I also sang “Jesus Loves Me” because all little ones should know that song! Again the child asked, “And how am I going to be able to understand when people talk to me if I don’t know the language?” God said, “Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak.” I talked to Thomas nonstop, he heard my voice until he went to be with Jesus; my voice along with his daddy’s. I told him how loved he was and how badly I wanted to keep him. I also told him it was ok to go be with Jesus so he wouldn’t have to hurt any longer. I will never get the chance to teach him how to speak for himself, but without the ability to ever speak a word, that little boy spoke volumes. “And what am I going to do when I want to talk to you?” God said, “Your angel will place your hands together and will teach you how to pray” I’m so very sad that I will not get to teach him how to pray. I can say he heard his daddy and I pray, he heard us beg for mercy on our sweet baby boy. “Who will protect me?” God said, “Your angel will defend you even if it means risking its life.” This line cuts me to my core. I did defend my baby, when they told me to terminate I told them no! I will never get the chance to defend him to that mean teacher, or that school bully, or some dumb little girl that will break his heart, but I got to defend his life in the biggest way possible. I feel blessed to have been given that choice so I could proudly say that my baby is still MY baby and a precious human being; I could not give up on my precious gift before God said it was time. “But I will always be sad because I will not see you anymore”. God said, “Your angel will always talk to you about Me and will teach you the way to come back to Me, even though I will always be next to you.” My sweet Thomas didn’t need any guidance in this area, he knew the way back and found it all on his own. And the child hurriedly asked, “God, if I am to leave now, please tell me my angel’s name.” God said, “you will simply call her, Mom.” The best name in the world, mommy! Every single time I hear Aaden say mommy it makes my heart happy. I cry when I think about how I will never hear Thomas’s voice say that word, but I do know that he knew I was his mommy. I can’t express how many times I said, “Mommy loves you baby boy”. He knew his mommy loved him more than life itself.

I’m not sure I heard much beyond this point. I don’t know if I just shutdown or if I was so focused on the lines in this story that I couldn’t focus on anything else. I had to tell myself that I have things to celebrate; I have children here on earth that love me very much and need me more than Thomas does. Thomas is in the hands of the creator; he is well provided for.

Once we got out of church we hit the road to have lunch with my mom in Orange. We still had tons of family in and enjoyed our time with them. The kids were running crazy as they always are and I was able to watch them, laugh and remember my reasons for loving Mother’s Day. People always say, “Thomas is always with you” or something along those lines. As true as that may be, it’s very hard to understand. I wish it made me feel better to think that he’s always with me, but it doesn’t. I want to kiss his lips again. I want to squeeze him so tight that he gets mad at me. I want to dress and undress him a million times a day. I want to feel his fingers wrapped around my finger. I want to tickle his feet and watch his toes curl. I want to place him on my chest and rock until my legs go numb. Yes, he is always with me in spirit, but I want him here in the flesh too. I know it’s selfish, but on Mother’s Day, and every other day, I miss my baby. 

Friday, May 13, 2011

05-07-11 / Celebrating the Life of The Sweetest Baby Ever Born

05-07-11 / Celebrating the Life of The Sweetest Baby Ever Born

Today was a day filled with uncertainty. I was wanting this to be a celebration of my sweet baby boy’s life, but it was still a funeral; could I hold it together? It seemed like this day took forever getting here but at the same time it snuck up on me. Was I ready to say goodbye to him? Could I walk away from the cemetery with peace in my heart knowing that I was leaving my baby there? Would everything go as I pictured it in my head and in my heart? Would we be able to do his life justice? I just want to make my sweet boy as proud as he has made me.

The service was planned for 10:00 a.m. and I was so panicked about being late. I told everyone I would be there by 9:00 to help get things set up but I failed miserably at that; it turned out to be a blessing that we arrived when we did. Our friends were there at 8:30 to begin blowing up balloons, we had over 140 balloons to send up to Thomas at the end of the service and they all joined together to get them aired up and ready for takeoff! The guys in the band along with my dad were there around 9:00 to start getting things setup and to make sure their sound equipment would work with the generator that we brought. We had every single intention of being there bright and early to help with all of these things but in real “Holly” fashion, we were late! I shot for a 9:00 arrival and made it by 9:45, about right.

I mentioned that it was a blessing that we arrived when we did and I will explain why. When we pulled up we noticed the large crowd that had already gathered, I began to panic and told Aaron how dumb it was going to look when we couldn’t find a parking spot at our own child’s service. He pulled right up to the front and parked where I feel certain the funeral home vehicle was supposed to park; he didn’t seem to care. We started getting the kids ready for what we were about to do and they didn’t have a care in the world. Aaden was running around crazy and Kamryn was scanning the crowd to see who all she knew. Let me quickly define crowd for you; the funeral home employees estimated around 250+ people in attendance. They said it was by far the largest graveside they’ve ever hosted. Most adults don’t have the type of turn out at their farewell service that our Thomas had; he was a special kid! The reason it was a blessing that we arrived when we did is because Thomas arrived shortly thereafter.

When we found out that Thomas wouldn’t live very long, Aaron got it set in his mind that he wanted to be the one to carry him into the service. He didn’t want anyone else doing that task; he felt it was his responsibility. He walked up to the car and Hershel was so kind and gentle while showing him how to carry Thomas down the sidewalk, took the casket into his hands and walked proudly toward the huge crowd of people. Have I mentioned what a wonderful husband I have? Have I mentioned how lucky I am to have a man that loves his children unconditionally and is the true meaning of the word “daddy”? He has shown a level of strength through all of this that I truly didn’t know he possessed! I am proud to be his wife and even more proud that I was able to share in this experience with him; the life of our baby boy.

Thank goodness my dad had come to greet us when we got there because he managed the kids as we all walked in together to say our final farewell to our sweet angel. As we reached the tent we spent a small amount of time getting him just right. Each one of us had a yellow tulip to place on his casket, plus one for him; his casket “spray” consisted of 5 beautiful tulips placed one over the other. No ribbons, no flashy d├ęcor, just 5 flowers to represent each member of our family. Once we got those things in order we sat with our family and thoroughly enjoyed the rest of his service. The weather was amazing, there was a cool breeze blowing just right, the clouds were beautiful and the sun was out but didn’t seem to be blazing to the point of discomfort. Everything was perfect. Brandon Hanson spoke such kind words and simply told the story of Thomas’s life. We didn’t want this to be a typical service where they blankly talk about who this person is survived by, blah blah blah. We wanted it to tell his story, the story of the tiniest warrior; and that’s what Brandon did. We also didn’t want your typical “Amazing Grace” and “Beulah Land” type of music. Don’t get me wrong, those are two of my favorite songs from growing up in a Baptist church, but they just don’t scream “celebration” to me. We were blessed to have Justin and William from the Calvary Baptist V2 service band there to lead us in praise and worship. They sang, “Praise You in This Storm”, “Jesus Paid it All”, “How He Loves Us” and “Our God Is Greater”; four of our favorite songs. Songs that expressed how much God has done for us and how we will thank him; even in the midst of the lowest point of our lives.

At one point in the service I looked back to see Kamryn sitting on my dad’s lap crying. We’re still unsure if she was crying because she was sad about Thomas or she was sad because others were sad around her; either way, it broke my heart. I motioned for her to come to the front, where she crawled into my lap and snuggled up to me and cried. Bless her heart, she just doesn’t understand it all, it’s too much for her to grasp. Aaden was clueless, he was just exceptionally concerned about the fact that he was “so thirsty” and was demanding a juice box. Why in the world didn’t we bring any juice boxes?!?

As Brandon began to wrap things up I became sad, I wasn’t ready for it to end. I could sit and listen to people talk about my Thomas for hours and hours and never become bored. I knew it had to end at some point but I just wasn’t ready for that point to come just yet. He finished up and we sang Our God Is Greater and then the fun began. We all got to step out and let our balloons go, how beautiful to see that many baby blue balloons headed toward the heavens in honor of our baby prince. Aaden held tight to his balloon, as he still had to release his butterflies. I had ordered a butterfly kit for him a few weeks ago and we weren’t sure when they would hatch. In this kit, they send you 5 caterpillars in a jar that eventually form cocoons and then butterflies. Well, he watched them daily to see what was happening and I just knew they would hatch over the weekend that we were away having Thomas; they didn’t. When Aaden got home from my parents’ house that Monday afternoon, we got to share with him that one of his butterflies was out; he was beside himself. He couldn’t stop looking at this butterfly; he’d go play outside and then run in just to peek at it. Over the span of the week following Thomas’s birth and leading up to his burial, all five butterflies hatched. We decided there was no better time or place than at his service to release Aaden’s butterflies. How awesome that there were 5; just like our family! I knelt down beside Aaden and unzipped his butterfly house, one flew out quickly and Aaden let out the cutest laugh; this was such a blessing, to hear such laughter in a setting where there should be sadness. All of them flew off except one, it was lying on the sidewalk and I was a bit concerned that it was sick and wouldn’t be able to fly. Aaron said he was concerned that Aaden was going to go over and stomp on it. I think my dad finally picked it up and it flew off, then the sweetest thing happened; Aaden released his balloon. His was the last to enter the sky, one little balloon from Thomas’s big brother.

We spent so much time hugging, I don’t remember everyone that we hugged, we were overwhelmed by the attendance and we wanted to see everyone there, but it just wasn’t possible. We felt like we were in a spin cycle for a while, but I will never forget it. To know that there are that many people out there that love our family and that love our angel baby amazes me. I will never be able to thank each of you, but please know that it meant the world to us. Once the crowd had cleared it was time for us to say our goodbyes. We each took our tulip off of his casket and left his with him, Aaron and I kissed his casket and Aaron gently placed him in the ground. I didn’t know he was going to do that, but I’m so glad that he did. I’m so proud of him.

We left the cemetery and went straight home to a party! We had a bounce house that Cmore rentals donated for the weekend; finger foods and a huge cake from Glenda’s Bake a Cake!! It was truly like a huge birthday party! Everything had gone the way I pictured it. The service was breathtaking, the weather was incredible, the mood was just right; all in all, I feel we celebrated his life and brought honor to the person he was.

We woke up the next morning, Mother’s Day, and I was greeted by Aaden yelling, “Hey mommy, come look at my butter…..where are my butterflies?” I said, “you gave them to baby Thomas, remember?” In true 3 year old, big brother fashion he screams, “but I had them first!!!” Happy Mother’s Day to me! All of my children were with me and always will be! 

Friday, May 6, 2011

05-06-11 / The Fight of His Life….

05-06-11 / The Fight of His Life….

To say that this weekend was the best weekend of my life and the worst weekend of my life is about the only way to describe it. Let me share a poem with you that my dad reads at every single funeral he has the honor of officiating.

I read of a man who stood to speak at the funeral of a friend.
He referred to the dates on her tombstone from the beginning to the end.
He noted that first came the date of her birth
And spoke of the following date with tears,
But he said what mattered most of all
Was the dash between those years.

For that dash represents all the time
That she spent alive on earth
And now only those who loved her
Know what that little line is worth.

For it matters not, how much we own,
The cars, the house, the cash,
What matters is how we live and love
And how we spend our dash.

So think about this long and hard;
Are there things you’d like to change?

For you never know how much time is left
That can still be rearranged.

If we could just slow down enough
To consider what’s true and real

And always try to understand

The way other people feel.

And be less quick to anger
And show appreciation more

And love the people in our lives
Like we’ve never loved before.

If we treat each other with respect
And more often wear a smile,

Remembering that this special dash
Might only last a little while.

So when your eulogy is being read
With your life’s actions to rehash

Would you be proud of the things they say
About how you spent your dash?

The remainder of what I will sit here and write will be a detailed description of how my son spent his dash. Let me say that I have never been so proud, not proud of myself, but proud to be the mommy of such a strong warrior. He never reached an age where he could ask himself if he would be proud of the things that are said about how he spent his dash, but this mommy will defend his honor until the day I die. He was a fighter, a lover, a snuggler, a peaceful reminder of what love really is, and above all a pure and innocent soul; never did anything to bring dishonor to our Heavenly Father. I truly believe my son’s life has forever changed the lives of many, but his daddy and I will never ever be the same.

This journey has been a long one. Finding out January 5, 2011 that our son was going to pass away has led us down a long road of ups and downs. There were days that waking up and functioning just weren’t an option and there were many days where we just celebrated the life we had with him from January 5th until now; there were far more of those days than sad ones. The closer we got to delivery day the more anxious we both became; Aaron was in far worse shape than I was. I truly felt that his birth and passing would serve as some sort of closure; after all, we already had that gut wrenching blow of, “I’m sorry but your son will not be compatible with life” and I felt this was just going to heal this wound that has been open for several months now; I have never been more wrong. Aaron was right, it was just as gut wrenching, and even more so, to watch him fight so hard and eventually pass.

We got up Friday morning around 4am to get our big day started, we had to make it to the hospital by 6:30 and drop Aaden and Mia off to Lauren and Shane before we could head to the hospital. Apparently 4am was not early enough because we ended up running late, go figure, story of our lives. When we got to Lauren and Shane’s house we saw that Casey was there waiting on us, she is our amazing friend that took the breath taking photos that everyone has been able to enjoy. She wanted to capture things from the beginning to the end. I could tell the mood was heavy when we walked in, Lauren tried to put on her happy face and spoke playfully to Aaden but I could see right through all that. We have all held it together when we’ve spoken of Thomas, but this day was so different. I simply looked at all of them and said that we were all going to be alright, this has been a tough road for everyone; still is.

We finally made it to the hospital and I don’t recall what time it was, I just recall it wasn’t on time. Aaron, Casey and myself all walked swiftly into the hospital where our whole family was sitting and waiting, I was shocked that they were on time to be honest. We hustled to the elevators and Casey quickly said that the ones we were standing at didn’t service the 3rd floor so we needed to follow her to the ones that did. Long story short, we get all of us on one elevator, the door closes and starts beeping loudly. I am mortified of being stuck in an elevator so I began to panic a little. We pushed the buttons again and still, loud beeping; it was then that someone noticed the sign on the wall of the elevator stating that these particular elevators weren’t in service and directed us to the original set of elevators; a much needed moment of comic relief but made us even later. The good news is, we made it! We got to the 3rd floor and into a pre-op room quickly. They started shoveling fluids into my IV and one nurse shared with me that we had to pump them quickly because we were behind; she didn’t see the humor in the fact that I’m late everywhere I go.

As Dr. Sherman promised, she was already there when we arrived. Lanie was there too!! Most doctors show up for surgery time, get the baby out, stitch the patient up and leave; she was there from start to finish. She had already briefed everyone involved about the situation we were all about to face and the staff members at St. Elizabeth hospital took control and treated me like a princess. Not only was Dr. Sherman there for me as my doctor, she was there for me as my friend. As we were all sitting in the prep room, and we knew the time was drawing closer to be wheeled into surgery, she is the one that asked if we could pray over Thomas and all of the lives he would touch; what an amazing woman she has proven herself to be.

I was doing ok, Doug, the sweet guy that was going to gently insert a needle into my spine to ensure that I wouldn’t feel any pain, came in with his camouflage bandana on his head and went through all the typical questions with me. He shared with me that if there came a point during surgery that I felt too anxious there was a drug he could give me to take the edge off, but he could not administer it prior to surgery. Apparently Doug was the one staff member that didn’t get the memo of what was about to happen and when he left my room he returned about 3 minutes later to let me know that he was sorry he said he couldn’t administer it prior to surgery and if I wanted it right at that moment I could have it. Clearly someone outside that door filled him in on what was to come. I asked him if I would remember everything to which he quickly said that I would not, that this particular drug causes temporary amnesia; no thank you! I wanted to remember every part of every second of that delivery.  

The moment came, the one where they say they’re going to take me back to prepare me for surgery and would call Aaron in when it was time to deliver our son; the tears began to fall, completely uncontrollable. I sobbed the entire way to the operating room and from that point on I was a total mess. They wheeled me into that freezing cold room and put me onto my table. I was shaking violently and sobbing so administering a spinal was as eventful as you would imagine. They kept telling me that I had to relax, I had to put my shoulders down, I had to try to stop crying and I had to hunch over so he could find the correct location to put the epidural in. All that kept running through my mind was the fact that they were about to do the one thing that was going to take my baby away from me forever and I wasn’t ready for that. No matter how much I hate being pregnant and how much I complained over the last 36 weeks, I was most certainly not ready for that moment. While I was in such distress, Dr. Sherman was right by my side, there to comfort me; thank God. They finally got the spinal handled and got me situated, I began trying to talk to myself quietly and prepare myself for the worst. Everyone had given my baby 6-8 hours to live, and even that seemed a little bit far-fetched to them. They really didn’t think he would live that long, but that was the estimated time they gave me. I had been telling everyone that I knew we would have him until Saturday, he was too strong inside of me to give up within 6-8 hours, but I began to doubt that maternal instinct the more I heard the words, 6-8 hours. As I laid there by myself, waiting on them to allow Aaron to come in, I kept running through what was to come in my head. How would I share him with all the people that love him? How will I be able to take my eyes off of him for one second? How will I react when he leaves me? How is Aaron going to handle all of this? These questions were never ending and somehow I asked these and many more of myself in about an eight-minute time frame, not only asking them but attempting to answer them in my own little way. Dr. Sherman leaned over and quietly asked me if I felt anything, which I knew meant, “we have already cut on you a bit and you haven’t screamed yet, but I’m just checking to make sure”, and when I said no she said, “ok, we’re ready, you can let Aaron in”. I will never forget her words or the tone of her quiet and calming voice; I wasn’t ready at all!

When Aaron walked in I felt relief and anxiety at the same time. I’m one of those people that likes to shield everyone from pain and for some reason I just felt this was going to be too much for him to handle. He did so well, I was so proud of him at that moment and throughout the entire weekend. Did he cry? Yes! But I am the proud wife of a man that loves his family, he loves his children more than life itself and this was killing him. Men like to fix things; he couldn’t fix things this time. His tears held a little joy and a little sadness, as did mine. We were so ready to finally meet Thomas, but we were so unprepared to let him go. We have had 4 months to prepare for this very moment and I had never felt so unprepared in my life. I felt more of this c-section than I did with Aaden, I attribute that to my level of stress and anxiety. I don’t think the numbing medicine worked as well since I was so overrun by stress and heartache. I never felt her cutting on me but I could feel everything inside, not just pressure, there was pain. I tried not to complain because I didn’t want them giving me any additional pain medicine that might make me sleep; I just toughed it out and tried to enjoy my precious time. I knew the moment he was born, I remember telling Aaron, “he’s out, he’s here”. With Aaden I knew the moment he was born because at that moment I could actually breathe again; I knew with Thomas because I felt him being pulled from my body and that’s a feeling I will always cherish.

It seemed to take forever for them to get him over to me. They were cleaning and weighing and measuring, but I just wanted to see him. I was so jealous because Aaron could see him and I couldn’t. I just kept asking him things like, does he look ok, is he breathing, is he alive? He just calmly said he looks ok and yes he is breathing. Finally I heard him cry, I lost it! Sweetest voice I have ever heard! I can still hear it. The nurse came around and said that she would get him to us as quick as she could but she had to go find him another hat, the one we had brought was way too big. I had no idea they would be too big because the only other baby I had ever purchased hats for was Aaden and the hat we brought to hospital for him almost cut off all circulation because it was too small. We all have big heads in this house so I was shocked that he would need a tiny hat. This is when they shared with me that he was only 4lbs 7oz and 16½ inches long!!! I couldn’t believe my ears!! Aaden was 9lbs 1oz and 20½ inches long, how in the world had I made such a tiny baby? I had to be reminded that he was 4 weeks early, but I think it shocked Dr. Sherman too; she said she thought at least 5½-6lbs, we were wrong! They finally brought him to me, all swaddled up with his tiny hat on, he was so beautiful but his entire body was blue; this wasn’t a good sign. Dr. Sherman shared with me that his heart rate was only 60bpm and it should be around 120bpm, my heart sank. I just started thinking that he was going to leave us sooner than even the doctors thought.

As we held him, we had the happiest nurse in the world snapping pictures. She was so excited to photograph our family and it means the world to me that she did that with such joy. With it being a sterile environment we weren’t able to have a photographer in the room with us and she was more than happy to pick up that slack. From that moment on, Thomas never left our sight. They allowed us to keep him from the beginning of his life until the end and I will forever be grateful for that. They finished sewing me up and got me moved back to a different bed and off to recovery we went. They allowed Aaron and I to spend some time with him in there and then they asked if we’d like to let a few of our family and friends in, to which we said yes. In my mind, I was thinking they would treat it like ICU and let one or two people in at a time, nope; the whole crew came pouring in! We had a Thomas celebration in the recovery room; it’s unheard of to have that many people in a hospital recovery room but Dr. Sherman made sure it could happen for our family and it was such an amazing time. We got to get all those first pictures with the family that every parent wants, we got to gather around my bed with the hospital staff and pray over Thomas and his life here, my physical healing and the emotional healing of everyone in the room. He was passed from person to person and I was filled with pride when I would hear everyone talking to him and telling him how loved he was and how absolutely beautiful he was. I think it was in those few moments that I realized that I wanted to share him, I wanted to pass him around, I wanted him to have visitors; part of enjoying your newborn is watching other people enjoy your newborn. I wanted that.

Friday was a good day; I would even go so far as to say that Friday was a great day! His color was good, his cheeks were full and round, he moved his arms and legs, he would tightly wrap his hand around our fingers and wiggle his toes when we tickled them; Friday was his best day. Everything we’ve read and everything we’ve heard says that these babies don’t feel and they simply have reflex type behavior, our son was quite the opposite. If he didn’t want to hold your finger, he wouldn’t, but when he wanted to it felt so good to feel the strength in his grip. He hated it when we would mess with his hats! Lauren became labeled the “hat lady” and it was her job to ensure his hat was on right, he yelled and swatted at her quite often. He let us know when we did things that he didn’t like, he felt. We read and heard that he would be deaf; I truly believe he was not deaf. I had a dream that he could hear a while back and I believe with my whole heart that he could. Aaron was trying to record his voice or something when his phone went off right in Thomas’s ear and when it went off sweet Thomas squinted his eyes and turned his head away. He could hear. We read and heard that he would be blind; I don’t believe he was completely blind. Someone took a picture at one point with a bright flash and he did the same flinching motion with his eyes and we all got excited that he could see that bright light. He could see. We read and heard that he would not feel pain; I know this was incorrect but we will get to that part later. The nurses would come check his heart rate several times, something like once every 30 minutes to an hour and it was always between 110-130, usually right at 120. They would also check his temperature, this was the part I hated, his temperature never exceeded 93 degrees which meant they wanted me to keep him swaddled up at all times to get that up. I just wanted to unwrap him and strip his clothes off to look at all of him, to know his whole body; every mommy does that with their baby and I couldn’t.

By the end of Friday I think he had something like 72 visitors, my dad was in charge of a sign in book that he brought with him. I’m sure glad he thought of that because I sure didn’t. I am so thankful that I have that now! The best part of that day was watching our kids play with him. Aaden was so excited about Baby Thomas and that truly shocked me. He’s not really too interested in babies and for him to want to hold him and not share him really warmed my heart. At one point he was holding him and his hat came off, something we tried to avoid with the kids, but he simply said, “Thomas has berries on his head; are those grapes?” I love his innocence. What he was seeing was the portion of Thomas’s brain that was exposed but when we simply said, yes, you are right, he left it at that. For us it might seem strange that a newborn would have grapes on their head, but to Aaden I guess it seemed ok because he never questioned it again. Kamryn was super excited about him too but a bit more hesitant because she understood what was to come, it was almost like she didn’t want to get too excited about him because she knew she couldn’t keep him long. She did take the time to love on him, she’s a mother hen, babies are her thing. Aaron says he thinks she was just pondering what was really wrong with him. We had shared with her that he would have a bo-bo on his head that would make him too sick to stay with us, but she couldn’t figure it out because she couldn’t see his bo-bo. Friday is filled with wonderful memories, ones I will always cherish with my healthy baby boy and his family and friends there to love on him.

As Friday came to an end our nightmare began. All day Friday he had tiny seizures, the ones that I had been warned about. Those seizures were so insignificant, most people didn’t realize he was having them when they were holding him; they were simple flinches, which seemed like typical baby movements at times. Late into Friday night he began having violent seizures, this is where the ride became very turbulent for Aaron, myself, and the rest of our support group. I will describe these “episodes”, as we began to reference them, to the best of my ability. When an episode was beginning we would notice that he would stop breathing, would slowly begin to turn blue around his lips, his arms and legs would then slowly begin to stiffen, his head would begin to turn to the side, his mouth would fly open, his entire body would be blue by this point and then his body would go into a full blown seizure. Aaron and I would always see them coming and would be quick to insert our fingers into his palms and when the big moment came, he would squeeze our hands so tightly that his knuckles turned white. This was a moment of torture, but I have to say that it felt so good having him squeeze our fingers, it’s like he knew he could count on us to get him through it. While in the midst of an episode he would not breathe at all, there were some lasting as long as 32 minutes and they began coming in one-hour intervals. As he was fighting to overcome these seizures he would gasp for air and when he gasped and then exhaled he would let out a scream that would literally rip my heart out; this is why I don’t believe that he didn’t feel pain. He would gasp for air for the longest time like this until his color would come back and he could breathe in normal intervals. At the beginning of a seizure his heart rate would go down between 50-80 but when his color came back it was almost always back to 120. He was a fighter! After a seizure he did the cutest thing with his breathing, the nurses said it was a sign of respiratory distress, but it was super cute; he would inhale and when he exhaled his little lips would do this sweet little puff thing; we all loved it. The nurse we had Friday night came in and said the sweetest prayer over Thomas, she can pray like nothing I’ve ever heard in my life. My dad even said he wished that he could pray like Rosemary, he said he felt like he touched heaven when she prayed. By the time she got there we had endured hours of these episodes and the torment of watching your baby suffer like that was beginning to wear on us. When he would begin to seize, Aaron and I went into immediate comfort mode, we began whispering in his ear how much we loved him, saying it was all going to be ok, what a good job he had done, how he had already proven everyone wrong, that it was ok to let go and go be with Jesus, that he didn’t need to fight anymore because mommy and daddy would be ok, that we wanted to keep him with us but we wanted him to be free from that pain; all the while sobbing tears of agony. I would say he did this for at least 24 hours straight, it became so exhausting and started messing with my mind. I became so angry with God. There came a point that when he would begin to seize and throughout the entire seizure I would yell at God asking him why he would bring my baby here just to torture him. Telling him that I think it’s bad enough that he has to die and I felt it was so unfair that he cause his short life to be one filled with such pain. Aaron looked at me at one point and said, “God watched his own son die”, to which I snapped at him saying, “this is MY baby though”! I remember sobbing and saying that I know people keep saying what an inspiration he is but he’s just a tiny baby, that’s too big of a job for such a tiny baby. Why does my baby get the job of inspiring people?? At one point I looked at Aaron and said, “we’ve made the wrong choice”. All I kept thinking was, if I hadn’t made the choice of keeping him, he wouldn’t be suffering so bad. Aaron, along with the nurses and Dr. Bharathi began fussing at me for saying that. They all ensured me that they believed we had made the right choices. Dr. Bharathi’s exact words were, “you have made every right choice”. Each time he would have a seizure, we thought we were losing our son. It was a rollercoaster like no other. When he would begin to turn pink again and regain a fantastic heart rate we would be elated, but I began to question my own feelings of joy when I knew he was going to have to continue to suffer; I just wasn’t ready to let him go yet.  The mental toll it takes on a parent to watch their newborn baby suffer for hours on end is something I cannot even begin to describe; I truly felt I was losing my mind. I can remember the sinking feeling I would get when his lips would begin to turn blue and I would say, “here we go again daddy” and the room would clear. When he first started having them everyone would stay in the room, but as they became more violent and more frequent, they would all leave us in there alone. We got so used to them that we stopped calling the nurses in there so much, we would just snuggle him through it. There is one detail I can say I am so proud of is that there wasn’t one seizure that our son endured without our fingers wrapped tightly in his grasp. We made sure to tell him constantly how much he is loved.

These episodes went from Friday night into Sunday morning, this meant we hadn’t slept since Thursday night; exhausted isn’t even a good word for our physical state. People kept saying, sleep, we’ll wake you if things go wrong. The NICU nurses were so good to us, they offered to sit and hold him in our room so we could sleep and we would be right there if something happened so they could wake us up. What nobody seemed to understand is, we didn’t want to sleep through his good times and only be there for him through his bad times, we wanted to be there for all of it. We have the rest of our lives to sleep; our time with him was very limited. I refused pain medicine the entire time; they gave me some shot that was the equivalent of ibuprofen but begged me to take a narcotic for the pain. I honestly felt no pain and if I couldn’t offer my son anything to take his pain away, why would I take some narcotic that was going to make me sleep through his life just to ease my pain. Didn’t seem right to me. I’m tough; I can handle a little physical pain. Everyone kept telling me I needed to eat; I didn’t want to eat!! On top of not having any appetite at all, my son wasn’t able to eat so why should I eat? I think in some strange way I was trying to torture myself in order to feel as though I was taking on an ounce of his suffering.

As Saturday night moved into Sunday morning we decided to shut our eyes because he hadn’t had an intense seizure in a while and we needed to rest. We all three climbed in the bed and snuggled up for a nap and my brother in law, Jae, would come in to peek at us while we slept. I remember him saying, “Holly, is he supposed to be breathing like that?” my heart sank. I knew another episode was coming and I felt intense guilt for having shut my eyes for that hour. Another episode came and that was the end of my night’s rest. Sunday proved to be one of the best and one of the worst days of my life. He was very unresponsive all day, didn’t do much finger squeezing, wasn’t moving his head at all, when he would have a seizure he wasn’t really yelling out because he simply didn’t have it in him any longer; it just seemed Sunday was going to be his day but we just didn’t know the hour.

As we were sitting and watching him like a hawk, someone mentioned how beautiful it was outside, I think it was our wonderful nurse Alison. I just looked down at Thomas and began talking to him in my mommy voice saying, “I sure wish I could take you outside” among many other things. Then came the magic question! Alison asked me, “do you really want to take him outside?” I quickly responded saying of course I do, can I? She said she would be right back and she came back with a wheel chair and confirmation that we could go for a stroll. I told her I wanted to walk and she quickly shot me down saying, “they’re a little funny about walking with the babies so you’ll have to ride”, I didn’t fight her, after all, she was granting me a huge wish. You couldn’t miss us walking through the halls; Thomas had his own paparazzi with him 24/7. We made it down to the gardens of the convent and the weather was breath taking. The sun was out and the breeze was phenomenal. We got to a stopping point and I decided I should take off his gown and allow him to truly feel the outdoors. HE LOVED IT!! He hadn’t responded to anything all day long until we made it outside. He began waving his arms in the breeze and wiggling his feet. Aaron would try to hold his hand and he swatted him away as if to say, “back off daddy, I’m trying to take this in”. Watching him respond to the wind on his face and in his fingers was a true gift. We all got a bit of a laugh out of the fact that he was strolling through the convent gardens in nothing but his underwear; I say that was his one rule he got to break. You can’t live your entire life without breaking one tiny rule, his just happens to be running around mostly naked where the nuns live! Our happiness quickly turned to sadness, which was my least favorite part of this whole experience; one minute we were all laughing and soaking in the biggest blessing in our lives and the next we thought we were losing that blessing. He began to have a seizure but this time it was different, his heart stopped completely; this was new. I saw the look on Alison’s face and I just knew, she simply said, “would you like to have a prayer?” At this point, Bro. Nathan had arrived and I had no clue he was there; he’s the pastor of our church. We all gathered in a circle and dad tried to pray, he really tried, but he couldn’t do it; he just sobbed. Bro. Nathan chimed in and prayed over our baby boy. The only thing I remember from that prayer was him mentioning the wind all around us reminding us that God is surrounding us; that was so true. That moment is one I will never forget because my little warrior began to rally yet again. His heart stopped completely and then he decided he wasn’t ready quite yet, all I could do was giggle when Alison looked at me and said his heart rate was back to 120 again. He was such a trooper.

We made it back inside and decided we might want to take a 3 minute shower each, neither of us had had a shower since Friday morning and now that we had been sweating outside we surely were beginning to smell. Aaron had attempted a shower earlier that day but when he walked in that bathroom Thomas immediately began to seize, as if to say, “you can shower later daddy, come look at me now”. Since we were so stinky I told Aaron that I would stand in the bathroom and hold the baby while he showered if he would do the same for me, maybe that way Thomas will approve of us taking a moment to freshen up; after all, he had to be tired of smelling us! Aaron had time to rub some soap on himself and rinse it off before another seizure hit and I had him get out of the shower. This was the next to last seizure of his little life. After that seizure we watched him for a little while and he was resting so peacefully so we decided we would do what all parents long to do; nap with our baby boy. We both snuggled up to him and slept for a very short time before he began having another seizure. Aaron scooped him up and I called for Alison to come down, we held his hands and went through the same routine as we had done for the last two days of just snuggling him through it all. Alison’s face was very different this time, I knew this was it, I wasn’t ready, I had been telling my baby he could let go to be with Jesus all this time but I didn’t really mean it; I wanted him to stay! Alison called for Dr. Bharathi to come check his vitals and when he got there he confirmed what she had discovered. I did ok until I watched him lift Thomas’s arm and drop it, I know that’s probably standard, but it killed me to watch it. He then began to comfort us in a way that most doctors won’t do. Hugging Aaron and I both; reassuring us that we were wonderful parents and we had done everything right. There was another lady that had to come in to pronounce him dead and she was so full of compassion, she hugged us and just cried; many times this weekend my heart bled for these people, watching others in pain like that must be a really hard job.

Once he was pronounced dead I demanded to go home, in a polite way of course. I just didn’t want to stay there without him. They began getting the paperwork ready for my discharge and while they were doing that Alison brought us everything we needed to give sweet Baby Thomas a bath. Aaron and I finally got the chance to look him over really good. We actually had a lot of fun bathing him and dressing him. Aaron really did the bathing; he always did Aaden’s baths when he was a baby too. He took care of the diaper changes too, when Thomas would tee-tee we would all cheer and then there were a few diapers with poo-poo and I’m pretty sure we cheered loud enough to wake the neighbors. He’s such a good daddy, he just loves doing things that most daddies don’t. I simply washed his face and lotioned him up so he would smell baby fresh. We had two outfits to try on him and neither of them fit; everything was huge on the poor kid! He was so tiny and here I was, prepared to birth another 9lb baby apparently. We spent at least an hour with him after he passed, we got him cleaned up and smelling good and then began to just snuggle him. I remember rocking him; he loved to rock. When I would rock him, he would snuggle so close to me and just relax. Since he loved to rock I sat with him and talked to him while I rocked until MY heart was somewhat content. Aaron and I took turns holding him and then we let everyone in to see him. He just looked like he was sleeping, he was at peace, no more hurting, no more stupid seizures! We all sobbed together and took turns holding him. I knew he had passed but when I would rock him I would pat his little hiney and sshhhh in his ear, it’s so natural to do that and I just couldn’t come to grips with the fact that he was gone. My precious angel baby was really an angel, and mama wasn’t terribly happy about it.

Dad had arranged to have a wonderful man in his church, who also happens to work for the funeral home we are using, come pick Thomas up from the hospital. He came very late that evening. Thomas passed at 6:10 and we got to have and hold him long after that. Mr. and Mrs. Trumble showed up to pick him up and I lost it. He came in and spoke with us for a moment and then he said, “now, take your time, but when you’re ready for us to take him, come out and let us know.” I started sobbing uncontrollably! Will I ever be ready for them to take my baby boy? No!!! I had been lying with him on the couch, getting as much snuggling in as I possibly could and when I stood up I realized all of the blood had started to move to one side of his face. I started panicking and crying out that I had ruined his face and I was so sorry. Aaron kept telling me that I hadn’t ruined his face at all, but there was no reasoning with me at this point. We took a few more moments of holding him and bonding with him and then we bit the bullet. The hospital had agreed to release me and told me I could stay until midnight if I wanted, I think it was around 11:15 or so when we left. I told them I wanted to carry him out, so they put us in a wheelchair and I covered his face to avoid any stares and off we went, on the longest wheelchair ride ever. When we got to the lobby area I saw a huge group of people standing there and I refused to go out there, I couldn’t sit there and pretend everything was alright in an attempt to make sure to not ruin these people’s evening. They had the Trumbles pull their car up a little further and they wheeled me down to them. This whole time Aaron and I kept wondering how they would transport our precious cargo. Surely they wouldn’t put him on the back seat or in a box?! Not at all, Mrs. Trumble had every intention of holding him and loving on him the entire way back to the funeral home. They came in their own vehicle and not the funeral home vehicle. It was almost like laying him in his grandma’s arms and that gave me some peace, not much, but some. She kept assuring me that he would be snuggled and loved the entire way there. It took us forever to say goodbye, sobbing and wailing almost. I just couldn’t stop kissing his lips, I couldn’t say, “ok, this is the last time”. We finally said we had to let him go and they slowly pulled off with him, I literally lost the strength to stand. I remember grabbing Aaron’s shirt and screaming “no” over and over and over. Then I began screaming, “they took my baby, they just took my baby”, “I want my baby back, please make them bring my baby back”. They had to physically dump me into my truck where I just collapsed, the level of grief I was feeling was like nothing I’ve ever experienced, I never want to experience it again. Our son fought the good fight. I remember telling people that I didn’t want to go home and leave him at the hospital and I didn’t want him to leave me at the hospital without him there either. I thought it was wishful thinking and figured it wouldn’t happen that way but it’s what my heart wanted. I remember telling Judy, before leaving work, I just want him to pass away Sunday and then get discharged 3 hours later. Apparently God and Thomas heard the plea of my heart because he passed away Sunday and we all left together 4 hours after he passed. I truly believe my boy fought so hard to stay alive all that time so that he could make his mommy’s wishes come true. What a precious baby he was.

We made it home, I had to be carried to my bedroom where I just planted my face in the mattress and bawled my eyes out. I knew that Casey had already posted the slideshow of his little life and I remember saying, “I want to look at his pictures” so Aaron pretty much picked me up and forced me to go look at the pictures, I’m so glad he did. As I watched it my heart was filled with joy. I didn’t cry at all watching it, I just got to sit and remember all his good times. That was the first time all night that I stopped crying. I sat and watched the 11 minute slideshow at least 5 times until I began to fall asleep at the computer desk. They put me in my bed, I snuggled up to the last blanket I wrapped my son in and that was the end of that.

Dad stayed the night that night to take care of Aaron and I if we needed anything at all. He was as quiet as a church mouse because we slept pretty late. I did get up and take a shower and I made myself dry my hair, I knew Aaden would be home shortly and I knew he would need to twirl mommy’s hair. Once I did those things I crawled back in bed to cry, my arms felt so empty and my heart was so heavy. Aaron had mentioned how unbelievable it is that we only had him three days and we miss him so much and already have a difficult time imagining life without him; so true. Aaron kept asking me to get up because Aaden was on his way home, I just couldn’t make myself get up. As soon as Aaden got to the house I heard Aaron bringing him to my room. Then came his sweet voice, “mooommmmyyyy, waaaakkkkeee uuuuuppppp, we brought you macaroni and cheese”, I begged him to crawl into the bed with me and he couldn’t wait. He came directly to me and laid his face next to mine, put his fingers in my hair and began to twirl; instant medicine.

At some point between Sunday and Monday I had made the decision that I was going to go to the funeral home daily to visit my son until the day of his service. My dad began to panic a bit because they don’t typically embalm babies because their bodies are so fragile. He immediately called David Trumble and told him that these were my new wishes, Mr. Trumble then called Hershel at the funeral home to see what could be done. Apparently Hershel took it upon himself to attempt to fulfill my wishes by embalming sweet Thomas so his mommy and daddy could come for a visit. We went Tuesday to make all the final arrangements and he let us know that we could see him and he already had him set up in a private room for us. He told us they didn’t close until 5pm, at this point it was 10:30am, and we were welcome to sit in there with him until 5:00 if we wanted. When we walked into that room my heart filled with joy because it was my baby boy. I remember smiling really big and saying, “yep, that’s him”, as if Hershel would have put me in the room with the wrong baby. Then came the tears, but I think they were tears of joy. He looked BEAUTIFUL!! Hershel had done an amazing job, I just kept thanking him for making him look so good. He looked like he did the day he was born, good color, chunky cheeks, puffy kissable lips and he just looked like he was peacefully sleeping. Hershel looked at us and said, “would you like to hold him”, to which I responded “are you kiddind me?? Of course!” Never in a million years would I have thought I would be so excited to hold a deceased baby in my arms, matter of fact, prior to this it probably would have completely disgusted me, but my heart skipped a beat as he handed him to me! Again, we all passed him around and loved and kissed on him. Talking to him as we did in the hospital, telling him we love him and miss him so much. I told him how jealous that Aaden would be if he knew Thomas was getting to play with the wild animals. The whole family got to love on him one last time. I told Aaron that I hated to say I was ready to go but that I didn’t want to leave at 5:00 when they were locking up. I wanted to leave while there was still music being played in his room and there was still life in the building, that’s how I wanted to remember leaving him. Hershel gave us a gift that he will never know the meaning of, we got to see our baby boy looking healthy and peaceful; now that is our final memory instead of watching him ride away and feeling myself slowly falling apart at the seams.

I have so many people to thank and that blog is in the making. This experience has rolled smoothly from day one. God placed all the right people in our lives to make this an experience filled with all the right puzzle pieces. I pray, one day, our story reaches the person God wanted it to reach. I want to share my blog stats, here are the hits that I have received from all over the world:

USA - 45,316 hits
Canada – 393 hits
Australia – 72 hits
United Kingdom – 59 hits
South Africa – 54 hits
Switzerland – 32 hits
Germany – 24 hits
Denmark – 15 hits
Guatemala – 15 hits
Japan – 15 hits
Honduras – 7 hits
Slovenia – 6 hits
South Korea – 4 hits

So, how did my angel spend his dash? Touching those lives; pretty amazing if you ask me! We are two very proud parents, what an honor to have been chosen to carry him. Now that I’m clear in my thinking, we made ALL the right choices; I cannot imagine going through life wondering “what if”. I can not only live without regret, I will forever be changed from meeting, kissing and loving that sweet Thomas of mine.   

To view the slideshow of his life go to