Tradition

     It occurred to me tonight as I told my boys that we would be taking the tree down tomorrow that they aren't the only ones who are sad that the holidays are over. It took me by surprise to have the feeling in my heart again. The one I used to have every year prior to 2011. I am sad for the season to be over. I think it went by too fast and I just don't want it to end.

     This came as a huge shock to me. Back around Halloween I started feeling this dread and wanting to just go to sleep and not wake up until after January 1st. I honestly think its the anticipation of it all. I hate thinking about all of our traditions without Sterling's physical presence here. I hate that I only really had one of each holiday with him. Yet I am so grateful for each second I had him in my life. It leaves me with this tormented feeling. I want to honor our traditions, traditions that Sterling was very much a part of even if it was so briefly. Yet I miss him so much I feel lost without him. Oh grief!! You are such a beast!!

      So tonight when we pulled the plug on the Christmas tree lights for what will probably be the last time this season I had a pang of sadness. That sadness took me by surprise. But I realized that I am a creature of habit. I like traditions. I love passing those traditions on to my kids and hopefully their kids one day too. So for me I will just find ways to include Sterling in those traditions. Whether it be some special angel ornaments on our tree or Sterling's picture seated at our table or included in our pictures. One way or another our traditions will go on and Sterling will go on with them.

     I have some big hopes for 2013. I have an awesome way to keep Sterling's memory alive and also spread awareness of congenital heart defects too. I hope to talk with those in charge and get this ball rolling on this. I will share more when I know its something we can do.

      I love and miss you Sterling. Always and forever.

Holidays

     So we made it through Thanksgiving. I cooked. All day I spent in and out of the kitchen cooking our dinner. It was hard. That was the last holiday we had with Sterling. He loved his food, so a holiday where we ate all day was definitely something he enjoyed. I got some really good pics of the boys all together last year on that day. So this year I decided that we would take the 8x10 picture of him on his first birthday and we put it in his highchair and pulled his chair up to the table. The boys absolutely loved that. We talked to him. We shared memories of him. We prayed with him. We took pictures with him. It was nice.

      That weekend we went in to see Santa just as we had done the two previous years with Sterling. This time we brought Sterling's picture and my boys held it as they took a picture with Santa. The result is all five of my boys with Santa. While waiting in line the boys and I met a family whose youngest daughter also has congenital heart defects. She has had several surgeries and when they saw Sterling's picture they teared up and shared their story with me. They told me some things that brought me so much peace. As hard as it was to go that day, I feel like Sterling orchestrated the whole thing. No coincidences, right?!

     December 1st came and I will admit it hurt. Remembering the day that my beautiful, vibrant, full of love baby stopped breathing was hard. Remembering the panic and fear I felt. Remembering the way I just knew he somehow was going to be ok. All the emotion of that day. Honestly for me the first was harder than the third. (The third is the day he was pronounced dead). I had such hope he would be ok.  I think its remembering the panic wrapped in the fear that was also wrapped in the Hope that Sterling was going to be ok. And then the absolute devastation when he was pronounced dead. Remembering that time is hard for me. I didn't do anything special. I just remembered Sterling and cried.

     I miss him. I miss him so much. He was such a gift. When I get angry about his death and I begin to think that there couldn't possibly be a God who would allow this kind of suffering. Well that is when I remember my baby boy and the complete joy he brought to our lives. Those are the times that I try to remember when I held him in my arms, rocking him to sleep at night and how I would look at him and how I just knew God had created this beautifully perfect little baby. The love I felt (and still feel) for Sterling and for his brothers, its a love unlike any other. Only God can create such perfection.

      Now here it is December 23. I have bought all the presents and food for Christmas. I have my almost 6 year old's cake in the fridge (his birthday is tomorrow). And I am sitting here writing this blog. I think back to last year at this time. I couldn't go many places. My oldest daughter had to get my son's birthday cake and presents. In fact we forgot until that day and he got whatever was on the shelf at the store. Last year I was living minute to minute and in such intense, debilitating pain. This year I am finding Hope again. I have met some amazing people. The boys and I have been on the front page of our paper. I am a completely different woman. I am seeing the gifts of Sterling more and more each day and its turning me into the woman I was always meant to be.

     I love you Sterling, always. I miss you, forever. Always and forever sweet boy.

Magnificent Mile

     I almost didn't go this year. The pain wrapped up in the joy of last year was almost too much for me. But then as I was driving down the street talking to Sterling and God a song came on the radio. I had never heard this song before, or maybe I had and just didn't pay much attention to it. The singer is Colton Dixon and in the lyrics he sings "see I was never gone." I thought so much of the song that I wrote down the name and then went about my day.

      Later that night I decided to look up on the computer who was going to be performing during the day at the lighting of Michigan Avenue in Chicago. I was trying so hard to be ok with going again. Its a tradition the kids and I love doing every year but it was also one of the last things we did as a family with Sterling last year. I didn't know if I could go and enjoy the day without him. But here these lyrics say "I was never gone" and talk about always being with me. So I keep scrolling the page and would you believe who is performing? Mr Colton Dixon himself! I decided to take it as a sign from Sterling that we could do this. We could go and remember him and have a good time.

     So we went with a friend and her son. I admit I had some anxiety the night before and the morning of. I cried. (Crying is a great way to release and let go of some of the anxiety). We went in just as we did last year. I even let her use Sterling's stroller he was in last year. I felt like by even just touching that stroller that he sat in just a few weeks prior to his death, that a part of him was physically there with us too. And you know what? Beyond the train ride, every single thing was different this year. We even ended up getting blocked out of seeing the parade and never even saw Colton Dixon.

     But as I walked down the streets of Chicago heading back to the train I realized that the day was exactly as it was meant to be. Much like my life now. It was not at all what I had envisioned or planned for myself but it was ok. We actually had fun. A different kind of fun then we wanted but fun none the less. Maybe Sterling gave me these signs to show me this? Maybe he just wanted to get me back in Chicago with his brothers? Maybe seeing the parade would have been too much for the boys and I? I really don't know.

     What I know is that time and time again I am being shown that my life is nothing what I had ever dreamed it would be. But I am still here. I still have life to live. A part of me may have died that day with Sterling but not all of me. I still have children who need to see life can be fun again. I still have a desire somewhere deep within that wants to live and enjoy life again. And Sterling has never left us. We carry him always in our hearts and I would suspect he truly has never left my side.

     I love you Sterling. Always and forever.

Its never easy

   I feel like I am failing at this blog. Finding Hope Without Sterling seems very hard this month. I feel almost like I did when he first died. Shopping is hard again, anxiety is back, my chest is tight, the pain is there and so are the questions I keep playing over and over in my head "how did I not know?" and "should I have known?" Its not a fun place for me to be right now. Yet this time I have a knowing under it all that I will be ok. I know this is temporary. I know now that grief is like an ocean. Sometimes gentle waves lapping at my legs, while other times the waves are huge and knock me down threatening to pull me out to sea.

     I have been told by those who "know" about grief that on Sterling's birthday I did the right thing.  Without really knowing what I was doing I gave myself alone time to talk to Sterling and to cry (good Lord did I cry) on the hour drive in. I got to go and meet with other adults who share my love of a show and meet some actors on that show. Then getting to have a coffee with someone I admire, not just as an actress but for her charity work and for her love of Jesus. I secretly want to be around those who have such a love for Christ because right now I am so darn angry with God for not giving my son back to us. I struggle with this often. I really try hard not to be so angry as I know its not healthy for me or my boys. Yet I continue to struggle with it.

     I see Sterling's death as a scene of a movie. Follow me here. I know somewhere deep within my soul that God is here, he always has been and always will be. I know he didn't "take" Sterling from me, as our children have always belonged to Him and are truly just on loan. I know this. So I feel like there is an ending I don't know about yet. I don't like this twist in my life, I want a re-write!! But God knows, He has a plan. The more I fight it, the more I am stuck in the wishing I could go back and change something I can't, the longer it will take me to see what God has planned for me and my family.

      So I keep looking for gifts from Sterling. I keep talking to God. I keep seeking out people who I admire so I can watch, I can listen, I can learn. My favorite bible passage is this :  "...once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows that we know, and holds us responsible to act."

Proverbs 24:12

 

     I feel like I know more now. I cannot just sit back and pretend I don't. I have to go out into the world and use what God has given me in a positive way. Sterling was a gift both in life and in death. I cannot pretend anything else. He taught me so much in his short time on this earth. And now I must keep moving forward. I must keep telling others about him. About how children over the age of 1 can just go to sleep and never wake up. How a child can have a life threatening heart defect yet look so flipping healthy. How doctors are smart but they are not God.

     I know that when I trust fully in God, in there being more to this life than I can ever fully understand. That is when I have a peace in my heart unlike any other. Sterling was not an accident. He was perfection. His life and his death were exactly as they were supposed to be. Hard for me to fully accept, especially when I live in a culture where it feels like we control so  much. Its hard to trust someone we have no concrete evidence exists. But somewhere deep within my soul I know Sterling is with Him and one day I will be too.

Halloween

     Its a holiday we were blessed to have two of with Sterling. The first year he was so tiny. He wore his little "Boo" hat the hospital gave him when he was born. I put him in the front carrier and put a blanket around him and then I wore my coat buttoned up over he and I. He slept soundly snuggled up over my heart as his brothers went door to door trick or treating. I will never forget the sounds he made as he slept or the way he felt so snugly on my chest.

     The second Halloween he had just turned one. I had hopes of all five boys going with a theme. I found the cutest little alien costume for Sterling and tried to talk his brothers into a Toy Story theme. No luck on that one. They all went as power rangers, one a penguin and Sterling the cutest little alien ever!  He got it last year. The first sucker helped him see that his brothers were getting candy, yummy sugar! He was in for some of that!

     This year as Halloween approached I began feeling a sadness. Who knew that this would be the holiday that would bring it? I think its because I know he would've "got it" so much more this year so I allowed myself to sit for a minute in the thought of what it would be like if Sterling were still alive. What would this Halloween be like with a two year old Sterling? But I knew I couldn't stay in it forever so I started looking for ways to lift me up. I found this blog 366randomacts.org and began thinking that the boys and I could take each day and do one little act, maybe hand out a card with Sterling's name asking them to pay it forward for Sterling? Would this make us feel better?

     I realized these acts are things we have been doing for years but now we will do it for Sterling. We will do these things daily with more thought as to honor our baby. We are not doing these things for praise from others. We are doing these things because we can't do any of it for Sterling anymore and we so desperately wish we could. So far we are starting out small. Holding doors for others, leaving little notes of encouragement in random places, donating $5 or $10 to charities that are making a difference, buying a package of diapers and wipes for someone who can't afford it, the list goes on.

     We will also start each day and end each night with something we are grateful for at that one moment. I will try my best to keep track and then hopefully do a post about it. In all honesty its very hard for me right now to focus on the positive when my mind is thinking that exactly eleven months ago today I was in the PICU being told that my son was never going to wake up, he was never going to open his eyes and smile at me. I was being told my son had gone too long without oxygen to his brain and as a result he was brain dead. Its very hard to find positives when my mind is there. But if the boys and I can do it, I think just about anyone can.

     Sterling, we love you and we miss you, Always and Forever.

Run

     Its getting closer. I can feel it again. Its that fight or flight response. I can feel the way my whole body just wants to run. I want to run and hide. I want to find somewhere "safe" to keep my family. I want to escape reality. I want to go back to a time when life had order. I want Sterling back.

     I have been doing so "well" as others would say. I can go to Target without wearing my sunglasses to hide the tears. I can be around other babies without wanting the floor to open up and consume me. I can even drive into Chicago, a place with so many wonderful memories of beautiful moments with ALL of my boys, without feeling like I want to die. I am seeing the gifts Sterling is still giving all of us. I guess one could say I am beginning to live again. So why am I feeling this massive desire to run?

     My best guess is that I am in the last few weeks of being able to say "last year at this time Sterling was ....."  I am getting closer to the one year anniversary of Sterling's death. I am getting closer to the worst days of my life. And I find myself reliving those days again. Over and over again. I have done enough work to know that its my minds way of trying to understand the unimaginable. I know that my mind is working so hard to ease my heart and soul. I know that I cannot protect my kids from everything. I know that running away will not make things better. I know so much now that I just wish I didn't.

     So today as the children nap (another step forward as I am no longer checking on their breathing every two minutes) I will finish this post up and maybe go look at a video of Sterling. I will sit and remember what a beautiful gift he was in life and continues to be in his death. I will imagine Sterling in Heaven where he is walking by now I am sure. I imagine him being able to do anything he wants, eat anything he wants and feeling nothing but love.



   

    

presents

     Last year I shopped black Friday online. I cleaned up after Thanksgiving dinner, put the bigger boys to bed and with Sterling in my arms began my search for deals. Its a memory I love. He was so heavy as I tried to type but each time I would lay him down he would wake up crying out for me. I, being completely wrapped around his little finger, hated seeing or hearing him upset so I would pick him up and continue on. I was so proud of all the great deals I got that night.

     Sterling stopped breathing less than a week later. I was numb. I was in shock. I thought at any moment I would wake up from this nightmare and Sterling would be here in my arms again. Yet each day there was something I needed to do. I had to find a funeral home. I had to make arrangements. I had to decide things that no parent ever thinks about. I had to make these decisions while feeling completely and utterly gutted. Yes, I felt like someone took a knife and just gutted me like a fish. I felt raw, it was in the worst pain I have ever felt in my entire life. And my words are not even describing it well enough.

     Then the boxes started coming. The boxes full of presents for my boys. I remember opening each box and pulling out all the clothes and toys that I had bought for Sterling. Each item I had envisioned seeing Sterling wearing or playing with. Now they were reminders that Sterling was gone. I had even bought each boy a coordinating sweater for family pictures. Now those would be the outfits that they would wear for Sterling's visitation and memorial. There would be no pictures taken at either one. I wish now I had, but that's another post.

     I quickly put all Sterling's Christmas presents in a closet. Out of sight. People had suggested last year that I find a child his age in need and donate them. Someone even asked if  I wanted them to return the items to the store for me. Both options completely freaked me out. Even though Sterling never wore or played with any of it, I had bought all of it for him.

    This year I think the boys and I are going to find someone special to give the toys to. I bought them  to bring a smile to Sterling's face, to my face. Instead when I look at them they are a reminder that he is no longer here the way I want him to be. Who knows, I may even find some things that I think a two year old Sterling would love and give them to another two year boy in need. Maybe this year Sterling will bring joy to a few children? Maybe in doing so his brothers and I will find a little too?

grief

     The thing about grief is that it can be sneaky. Grief can let you have a good day, a good week, I have even heard as time goes on grief will give you a good few weeks in a row. Then without warning it slams into you. It stops you in your tracks and it makes you feel the pain again. I described my grief early on as the waves in an ocean, some gentle and some knocking me down and threatening to pull me under.

     The problem with being so busy this week is that I didn't have much down time to feel all the things I needed to. I realized I didn't even acknowledge that October 15th was when, two years ago, that I met Sterling for the first time. The 16th was when I brought him home. I was so busy caring for my mom (with her surgery), caring for my boys, running my daycare, getting everyone else cared for that I neglected me. I so neglected me that it was a few days before I realized I had not eaten. Grief is sneaky like that. 

     So I will say that another little gift of this journey is that I have really begun to understand the importance of caring for myself. I have always been the one that takes care of others, so I am working on it. Tonight I put my boys to bed and jumped on the computer. I tried to start this post a million times. I wondered if I should even write of my rough week?  Then, and I have no idea why,  I went over to Jen Lilley's YouTube page and watched her clips of when she was on Disaster Date. I laughed so hard I woke my 4 year old up.  With some tension released I came back and finished this post.

     Lesson for the day? It doesn't have to be much, even just a few minutes laughing can help,  but I really need to take time for myself each day. I need to slow down. I need to watch things that make me laugh, I need to really take the time to remember those special Sterling dates, I need to be able to just take a minute and breathe each day. I feel so much better when I do.

Levi

     When Sterling died I felt so alone. I had never really met anyone who lost a child before. I knew they existed but they were always "those people" that I hardly knew and whose stories broke my heart. I would send them a card, pray for them, maybe even donate some money for them. Yet I never really knew them. Now here I was, one of them. As they will tell you we belong to a club you never want to be a part of. A club that you hope never gets a new member. Yet I know now this club is huge, it spans the globe, it knows no race or socioeconomic status. And the hardest part to swallow? New members are added every day.

       Being a grieving parent isn't easy. It can be downright ugly. I knew early on I could let that pain and ugliness take me one of two ways. I could either decide to honor my son's short life or I could choose to give up and be bitter and angry that he was gone. I chose to honor Sterling and I searched out others who felt the same way. In doing so I have met some amazing parents of some amazing children. These parents have taken their pain and have turned it into action. That action can be choosing to get up each day and go back out into the world, working with our federal government to change laws and bring awareness so what took her child will never take another, making screenings that could have saved her child be mandatory to save others. So many amazing stories. So many ways to honor our children.

       One of those I met is Ellie Collom. Her 3 1/2 year old son Levi was healthy, happy and full of life. He died March 18, 2012 suddenly, unexpectedly and they still don't know why. Its called SUDC (Sudden Unexplained Death in Children). Levi's family has decided to honor his short life by building an exhibit called  Levi's Adventure Trail which will be an interactive outdoor exhibit in Levi's honor at the Discovery Playhouse Children's Museum in Missouri. They have been raising funds to do this and I have followed their journey on Facebook. I am humbled and amazed at their efforts. I know this will be built and I know this family will continue to do amazing things in Levi's name. I feel blessed to have met Ellie, even if its only been on Facebook. Please take a look at the beautiful Levi and be amazed at the wonderful things his family and friends are doing in his name. https://www.facebook.com/levistephencollomfund

     I have no idea where Sterling's legacy will take me. One thing I know is true, our children are loved and our children are missed. Always and Forever.

    

Sterling is already educating others

     Last night I spoke with a friend. Her son ten months older than Sterling. He had a cough for a week and last night he threw up. Immediately when I hear these things I think of Sterling. Sterling had been under the weather but nothing serious(so we thought). The idea is kids get sick, kids have coughs, kids are so resilient. Sterling has opened my eyes to the scary truth that children die everyday. Sometimes we get answers and sometimes we don't.

     Back to my friend.She said she was taking him in first thing. I asked her to please have the doctor order a chest x-ray as I often wonder if any doctor had looked at Sterling's heart sooner would they have seen how enlarged it was? So I just got the message that her son has pneumonia. The doctor had thought her son just had a cold. She asked for a chest x-ray. Her son has pneumonia. Now he is on medication that will help him, he is being monitored by his doctor. I think we all know pneumonia is much more serious than a cold.

     Today I am choosing to see this as a gift from Sterling. In the beginning I hated these stories because it made me ask why that person gets the miracle and we didn't. But today I look at Sterling and I know he will make a difference. Today I know that not everyone gets the miracle they pray for but that the miracles are still there if we just open our eyes and hearts to see them. And THAT is the miracle we called Sterling. Loving you always, missing you forever sweet boy.

No Coincidences...

         Sterling would have been 2 on the October 13. His first birthday in Heaven. I wasn't sure how I would feel on this day. I had heard the days leading up to a special date are much worse than the actual date. But I had no idea. Over the last 10 months I have felt emotions that have scared me and knocked me to my knees begging God to just please take me home! I have been in excruciating pain and had anger so strong it scared me. So how would I feel on the day my sweet baby boy was born? Could I celebrate the 13 months 2 weeks and 6 days we were blessed to have him? Or would I be once again knocked to my knees in agony because he isn't here?

          Well since Sterling died I have gone back to things that have brought me joy. I had so much joy in my time with Sterling but after he died even going upstairs and sleeping in my own bed and seeing his empty crib was something I couldn't do. I actually slept on an air mattress on my living room floor for over a month. I would send others upstairs to get what I needed. Somehow just seeing his things exactly as they had been that morning, it made it real. And I lived in denial for months. I would literally tell myself he was napping or he was with his Grammy or his sissy or whatever I had to tell myself so I could care for Sterling's brothers. At night, when everyone was asleep, during what was always our special snuggle time, that's when slowly the reality that Sterling was never coming home began to sink in. That's when I would beg God, that he being God He could do anything, and through my tears and sobbing I would beg Him to please give him back. Just let us have him back now. Slowly I began watching television shows that I loved again. And even if it was just for an hour everyday I could escape my excruciating pain for that hour. I started with a show that I have watched since I was 15, General Hospital.

         Now back to coincidences. Facebook and Twitter connected me to people who either helped me with my grieving process or helped me escape it every now and then. On Twitter I met some awesome GH fans who shared my love of the soap. I also would randomly tweet to the actors/actresses and was absolutely amazed that they would occasionally tweet me back or favorite my comment. Through doing this I heard about some GH actresses coming to Chicago on, wait for it, Sterling's 2nd birthday! Wow! I had gone to events before but always in California and had stopped once I had the boys as it was too difficult to find people I trusted to watch them and I actually never really left them for more than a day so there was just no way I was going to leave my boys behind. I honestly never missed it as I so enjoyed being a mom and unless I could bring them rarely did anything. I went back and forth on it but had a dream one night and woke up feeling like Sterling was telling me it was ok to have fun again, it was ok to leave his brothers with a responsible adult and go have fun again. So I bought the ticket.

         Driving in to Chicago I cried so much at times I thought I may have to pull over. But I went on as I talked to God and to Sterling. I can only imagine what other drivers thought! I found out I won a coffee date with the amazing Jen Lilley! So excited! Not that the character she played on GH was a favorite but I enjoyed watching Jen play her anyway. And as I learned more about this actress I saw that she has Faith, she gives back, she seemed like a genuinely great woman. As I read about her I remember thinking "This is an amazing woman, I hope to meet her one day." Now here it was October 13th the day Sterling came into this world. And I was actually going to be able to go to meet her. Was this simply a coincidence?

        There are no coincidences. Not only Jen but everyone from that day was great! So nice. Looked at Sterling's picture. As any grieving parent knows we love it so much when others acknowledge our children no longer on this earth. The day was a blur of fun. Driving home I realized that this was another gift from Sterling. I never would have gone if he was alive, I was having too much fun with my five boys! And while I would give back every positive thing that has come from his death (new friends, new travels, a fun fan day in Chicago) to just have one more minute with him, I am choosing, right here, right now to embrace my new life. Let it lead me. I may even have joy again from time to time:)