Today Sterling would be nine years old. It’s hard to say it out loud. It’s hard to write it. It’s hard to think about him being nine. He is forever that round, chubby, Zen baby. He never got to test the waters and make me angry or disappointed. He never got to try sports out until  he found his favorite. Hell, he never even took a few unassisted steps. For his entire life he was attached to me, holding onto me while I held just as tightly onto him.

It’s been a rough few years now. Maybe you’ve noticed by my lack of writing. My mom’s dementia worsened quickly and she is now in a nursing home. I feel tremendous guilt in that. I know she wanted to remain home until she died, surrounded by her grandkids. But she was getting up all night, trying to leave. The incontinence was a constant struggle for me to keep the house clean. And when she began thinking I was someone else, and trying to attack me, I had no choice but to place her where there was staff to attend to her needs.

Then there’s Jayden. Autism, mental health and puberty haven’t been a great mix. And it’s gotten rough, really rough. I’m struggling to maintain work and life with him home. But there just aren’t places willing to accept him. We have had hope, only to have it dashed multiple times. But we are on waiting lists, and I remain hopeful that this hell won’t last forever. In the meantime, I take it moment by moment.

But today I woke up, a little emotional, but ready for the day. We shoe shopped, had a quick lunch and went to pick out his cake. I get emotional when I pick out his cake. I wonder what his favorite flavor would be? What would he want decorated on top? When they ask me what I want the cake to say, I always pause, what should it say? I honestly thought today it should say, “FUCK YOU CHD! Sterling should be 9 today, but you stole that from us!” But there’s just not enough room, and I don’t want it to be more awkward then it already is. And so I say “Happy Birthday Sterling” is fine. And we come home.

Today after singing to him and while eating cake, I played his video. The one that shows most of his life in less then 5 minutes. The boys and I start out smiling. “I remember that” comes next. And then the tears. Followed by a howling cry from one his bubbas, which made me sob uncontrollably. Baby asked us if we were ok. We told him we just miss Sterling so much that it hurts. Crying is ok when you miss someone this much. We spent the rest of the day quietly at home.

In December it will be 8 years since we last held him in our arms. But there’s not a day that goes by that we don’t hold him in our hearts. He is forever a part of us, and we with him.

Happy Birthday Sterling, you are loved and you are missed, always and forever💙🦒

     So many people see me today, read my social media statuses and hear all I have done in the last 6 years and they think I am healed. I find that word funny. Healed. Is there really healing when you believed in something so strongly for your entire life and in an instant it was taken from you? Can you come back from such an explosion and look even a little bit like you did before?

     So I don't watch a ton of tv. I just don't have the time and now that my boys are older, they have things they want to watch and do and I refuse to have more then a couple of tv's in our home. So I have a few favorite shows and watch when I put my boys to bed. One of those being Grey's Anatomy. It has been something I have watched since it started. Its been there with each of my children. It was a show I watched with a sleeping Sterling in my arms. I struggled to watch after he died because, if you watch too, it can be very realistic.

     I've always loved the character of April Kepner.  Weird, I know. She was kind of annoying when she first started with all her ideals and ideas about God and life and her awkwardness. But I saw me in her. I was naive too. Believed strongly that if I just followed the rules and lived a good life and did good things, I would be ok. I believed in prayer. My life wasn't easy. I can say this now, the things that shook my world then, it was easy to see the why when the good followed. The "that's why this happened! To get me here for this!"

     And then Sterling, my beautiful 13 month 2 weeks and 6 day old son, stopped breathing. I picked him up praying for God to help me. To please, please don't take him from us. I bargained with God while Sterling laid in a hospital bed for 2 days. I would do anything, give up everything and go anywhere, just please don't take him from me, from his brothers and sissy. Even as they silenced the alarms as I held him in my arms, I prayed. Sudden healing, its a thing right?! You are God! Work your miracles and we will spend the rest of our lives telling the world how amazing our God is!

     Sterling died anyway. My heart didn't just break, it shattered. Violently. My body ached. My children fell apart. Our world became scary. We had to learn to live without Sterling here. But it was more then just losing him. Everything I had ever known, the safety of my neat little world, gone. Just like that. And it was terrifying. I continued to pray for a while. But the pain was so intense. And I felt no relief. And all the well meaning people trying to tell me this was His plan and He would work good out of this, it didn't ease my heart or mind, it brought even more pain.

      I didn't care if anything good came from this, I still don't. I just wanted and still want my son back in my arms. Sterling wasn't a job or a house or a car that I lost and can replace with something just as good or even better. He was an amazing boy who made our family feel complete, whole. I turned away from religion and even God. I felt betrayed by Him. I felt abandoned and alone, for years. I sought people out to ask their help in figuring this out, and I know, once again, they meant well, they just put it too nicely together. Too glitchy, made it too easy. I still love them deeply for trying, for never giving up on me.

     Its not easy for me. I can't ever really describe the horror of that day well enough. Even if you think you understand, I really don't believe you can unless you have lived it. My son died. I pumped his chest, terrified I might break his ribs. I breathed my air into his mouth, only to have it gurgle back into mine, something I would taste for months after. I had to answer questions, from the beginning and for months after, because people needed to be sure I didn't harm my child. I lost friends because my grief, my pain, was too much for them to see and sit with. I feared losing my other children because that is what happens when a child dies without an obvious cause. I felt so abandoned. Like I was being punished for some reason and I couldn't understand.

     Before I get the messages, I don't live in this place anymore. I went to therapy, alone and with my kids. I talked and talked with other parents who have lost children. I slowly began talking to God again. But my relationships are different now. I am different now. I don't understand why this happened to me, to my family. I now believe that God isn't in quite the control I used to believe he was. I now believe bad things happen all the time, all over the world. There is no rhyme or reason for it. I don't believe Sterling died so I would speak out and save other children. My child was not a sacrifice for yours, at all. Your child isn't worth more then mine.

     I believe my anger and sadness propelled me to do more. But I also know this kind of pain and sadness happens to other people and it breaks them. So I know we aren't chosen because we can handle it. And yes, a tv show and a character brought this blog post out of me. It's not a new idea for me, I have been struggling for the last 6 years with this. And I think, to some extent, I will struggle for the rest of my life with it. Because I like things to fit neatly into their place. I like to think that if I behave this way, I know the results. It is extremely hard for me knowing that isn't how it works. That we all just do the best we can in the moment.

     So thank you Grey's and Sarah Drew and all the people who created and told this story. Once again you came so close to real life. And as someone who sees so much of herself in a character, I appreciate it. It makes this journey a little less lonely knowing others get it and are willing to talk about it.

     I woke up this morning whispering, "Happy Birthday Sterling, I love and miss you so much..." And then I came downstairs and started my day. With five boys, several of whom have special needs, my day begins immediately and with energy and a bit of orchestrated chaos. But today everyone had a little more edge to them. I began to ask if they knew what today was, a few knew and a few were clueless. Though I feel like, based off their behavior, their bodies remembered and knew.

     I got the two biggest boys off to school as another toddler was added to the mix for the day. I'm homeschooling the two little boys while also trying to keep two toddlers entertained and safe. So we joined a home school co-op today. We had to be ready and packed up and out the door early to drive into the city (45 minutes away) to ice skate with new friends. One of my boys has anxiety so not being able to give him details and show him ahead of time what was happening made for an intense morning and a few near meltdowns. I drove off at 8:45 am, exhausted.

     The boys were quiet and I got to have some quiet reflection as I drove. The sky was beautiful and I again whispered, "I wish you were here sweet boy...."

     The boys had fun. The toddlers fought and screamed and tossed Cheerios for the adults to pick up. I learned that not everyone home schools the same and our kids will be ok. My kids made friends and we can't wait to meet up with them again.

     As our work day ended, we ate dinner and then ran to the store to pick up a cake and ice cream for Sterling. I've done this for six years now, buying a cake for a child who wouldn't be here to blow out the candles. But this year as I walked in, I wanted to feel and remember it. I wanted to try to explain it to you, so here goes....

     I can hear everything as I walk in...and my mind goes to when I used to shop with my little buddy...its so strange, I can still feel him in my arms...the weight, the smells all his own....I see the people and the parents with children and I wonder if they have ever had to make funeral arrangements for their most amazing child....I walk up to the bakery and I instantly regret being so busy this week and not preordering a cake...but we find one that works...she asks what I want her to write on it...I discuss with my 10 year old...we decide to write it as though he was here...we don't tell anyone he isn't this trip...we just don't have the energy to....we walk out to the cash register and I look down at the writing "Happy 7th Birthday Sterling" and I remind myself not to cry here...I look around and wonder if the world knows that the most amazing Zen baby never got to become the most amazing 2, 3, 4, 5, 6 and now 7 year old....do they know how my heart longs to touch his face again? How I would give anything to kiss those cheeks again? Do they care?

     We go home and light a #7 candle. We sing. We collectively blow out the candle, its so quiet for a celebration, but yet there is joy.  We picked out a toy we thought a 7 year old boy might like and we will find the right recipient soon. We played a game. Got ready for bed. And now that the house is quiet, I sit, remembering. Longing. Holding onto hope.

     Our family has had a rough year, big changes are still ahead. And I am exhausted most days. But I am grateful. Grateful for Sterling. Grateful for Gia and Jaxon and Jayden and Sawyer and Silas and for Mr Toddler who we still don't know what the future holds for him, but we are choosing to enjoy whatever time we have with him. I'm going to bed still missing my baby, I think I always will. And that is ok.

     Happy Birthday Sterling. You are loved and you are missed, always and forever. I wish more then anything I could know a 7 year old you.

2016

    Where do I begin...2016...you started out just like every new year full of promise. My little family was just beginning to feel comfortable in our skin again. Things beginning to look like they were falling into place. Even old relationships were being mended. And then just like that, you started pulling on that rug I was beginning to trust again. You know, the one you ripped so suddenly, so violently out from under me when Sterling died? I was just beginning to trust it again.
 
     I guess I should thank you for not ripping so violently this time. No. This time you started back in Spring with a little tug, made me lose my balance a little. But you let me regain my footing and stand on it with even more purpose then before. A "little' blip on the map of life, we survived and recovered quite quickly. If I really look back, I would say too quickly. It wasn't quite the same but I so desperately needed it to be. I overlooked issues building, smoldering, preparing to explode.

     I needed to feel that safety of the firm footing on that rug. I clung to it really. I am a fighter and I keep looking for ways to fix things, people, everything. I don't believe in giving up on my children or on other people or projects. I will try everything I can think of to make it "right." Even if it means I  sacrifice myself in the process.

     Then Fall came. Back to school. Transitions. Sterling's birthday. The possibility of losing our precious foster baby. That rug started feeling a bit shaky. But still I try. New medications. IEP's at school for a few of my kids. Anything. Everything. We must be "normal" or at least appear to be. No one can see we are barely able to stand on that rug we cling to for stability.

     Things begin to calm. But I should've known. That false sense of security, just like the calm before the storm. And just like that, EXPLOSION. Where is that rug? I can't find it. But I MUST keep my family together, at all costs. Thats what family does, they stick together. Always. Even as my 12 year old punched me in the side of the head. Even as he had my hair in his fists, violently yanking, pulling as the screams of pain came from my mouth. Even as I am looking at his eyes, once so full of love, now full of something I can't describe, now void of anything I once knew. Even as I'm swollen and sore and scared wondering what is happening to my boy, there has to be a reason. Something we can fix.

     We try to fix it. With hospital stays and medication changes. We miss him. He misses us. He comes home. Only to turn around just days later, in the midst of the 3 worst dates of my life, the days Sterling died. He was doing so well. So well. And in an instant he took off running. Breaking things and hitting those of us trying to help him. Back to the hospital we go. This time broken in so many ways. That rug is gone, I fear it might be gone for good this time. December is not our friend. December now holds so much loss and pain.

     When he came home this time he lasted not even 24 hours before losing it again. It was in my panic running after him watching as he headed for a major road with traffic that I knew. I knew without a doubt this isn't ok. I cannot do this. I could not keep Sterling safe, or alive because of things going on in his body that I couldn't see. But this child? This child's needs are right in front of my face. And if I choose to ignore, I may end up responsible for his death. I would never survive that, I barely survived Sterling's. In that moment when the police showed up and my son was safe, I hoped into the back of the squad car to give him information and instead the sobs came so deep I couldn't speak. Our lives are never going to be the same.

     But one thing I clung so deeply to after Sterling's death is that our lives can be different. Different doesn't have to mean better or worse, its just different. I am so tired of making plans with my children only to have life laugh at me and make it something different. This life, with a dead child and a child with developmental disabilities is not what I ever, ever, imagined for myself. But I am a fighter. I will grieve what is lost and I will find the joy again one day. I promise I will.

I have never shared pictures publicly on here of Sterling or my boys and I. I guest blogged today over on the Pediatric Congenital Heart Association's page. And I shared some pictures.  Head on over and check it out:  conqueringchd.org/hope/

   

2016

     On January 2, 2013 I wrote the following as my status on Facebook:

            13 months ago today my life stopped in an instant. Hopes and dreams were shattered. My life lived in an altered state for months. It's strange for me, but when I think back to December 1-3, 2011 its almost like I see myself in a movie, like I was out of my body, a witness to not just Sterling's death but my own. I have had an amazing 2012 filled with immense pain and some life experiences that brought me peace and some joy. I have begun to truly heal and to find hope again for the future. The knowledge of just how fragile life truly is at times both frightens and amazes me. I am looking forward to 2013. I have hope that Sterling's Bubbas and I will continue to find purpose and with it, healing. Always and forever <3

     And now here it is 2016. We celebrated what would have been Sterling's 5th birthday in October. We survived the 4 year mark of his death. How has it been 4 years?? I have done so much in his name yet I feel like I should be doing so much more. The waves that used to come crashing over me, taking me under with them on a daily, sometimes hourly basis....they aren't so frequent anymore.

     Today I feel this urgency inside me. What else can I be doing in his name? What else should I be doing? It is more then wanting to keep his memory alive, which I so desperately want to. Its more about being a part of a change I feel coming. More about being a part of something bigger. Because the things I do today are less and less about me and more and more about a bigger picture.

     Our family welcomed a baby boy into our home last summer. We have no idea how long he will stay with us. It really wasn't a hard choice to make when listened to our hearts. But our heads, they took some convincing. What if we really fall in love with him, like we did with Sterling? What if we then have to hand him back to his birth family? Will we be able to survive another loss? Is it something we want to do?

     The answer was there, whispered by Sterling. Would we have said no to loving him had we known the immense pain we would endure just 13 1/2 months later? Absolutely not! We would do it again and again. We are better knowing and loving Sterling then never knowing him at all. We will be better for opening our hearts to this little one as well, no matter what the outcome may be.

     But that also brings me back to this feeling deep within me. I have lost myself in parenting and fostering before. Gained a lot of weight. Didn't take care of myself because I was so consumed with taking care of everyone else. I refuse to let that happen again. Its not been easy but I have continued working out. I have continued Sterling's Heart Loveys. I have continued working to help bring awareness for CHD. And I plan to do more. I need to do more.

      I'm not sure what 2016 holds for me or my boys. But I am beyond grateful I am here today to find out.

Above and beyond.....

     When Sterling stopped breathing nearly four years ago, my oldest two boys were at school. My younger two boys were at home. While I was in the ER, standing, wondering what in the world just happened, my cell phone rang. It was the older boy's school. School had let out and they were wondering who would be picking up my boys today. I started to try to tell them, but my words couldn't come out very well throughout the tears. I believe my sister got on the phone for me. That was a Thursday.  By Monday Sterling was dead. And I had to keep the Bubba's routine, I now know I needed it more then they did.

      The boys' schools were both wonderful. So many offered to help with money, with time, with an ear to listen to me as I tried to make sense of the horror of what just happened. A few teachers and the principal of the bigger boy's school came to my home to sit with my autistic son so I could focus on the visitation.  The bigger boy's school even had a teacher dress up as Santa and deliver presents for all of my boys. The little boys' preschool let my younger one stay a few extra times so I could talk with the pastor and make funeral arrangements. All above and beyond anything I expected from anyone.

     With time, all the support dwindled. While some still would give us a surprise gift letting us know they remembered, most of the support became something I felt I needed to fight for my kids. I will advocate for them always, but it gets exhausting. Our family will never be the same. We are different now. Not better or worse, just different.

     This school year my oldest two boys now go to different schools and my littles are now at the school the bigs were at. In fact my now 8 year old has some of the very teachers his big brothers had when Sterling died. They take their time with him and treat him like every other kid. They encourage him. The other day he felt so comfortable with them, he invited them to his basketball game. Guess what? They came! Totally making his day.

     Sometimes our teachers don't get treated fairly. People think of them in a certain way. I don't always agree with the things that go on in my kids' school and I have no issue advocating for what is best for my kiddos. But I believe our teachers care. I have seen them go above and beyond time and time again. I know our family will never forget the kindness shown to us. My children are better students ( and people) when they know their teachers care about them. Thank you to the teachers who care about my children. Thank you.