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.

Grief: A Mother's Journey

     I don't compete with others. Yet I am always in competition with myself. Always. I am my hardest critic. I am always feeling like I could do better. Always. And one area that really gets me is my parenting. Our family has been through a lot. And one of my children is no longer on this Earth for me to guide and watch grow. Parenting him has been the toughest job I have ever had.

     I can no longer be worried about what he eats. How much he's sleeping. Where he's going to school and how well he's doing in school. No. I have to worry about wether people are forgetting him. What impact his short life will have on this world. What I should be doing to keep his memory alive and also what I should be doing in his name to help in the CHD community. Those worries keep me up some nights.

     While I am worrying about my dead child's legacy, I am also raising 4 young boys who are very much alive. Who make mistakes and need guidance. 4 boys who I do need to worry about what they are eating and how much sleep they are getting. Their schooling is also a huge source of worry for me. These boys of mine are alive and here to make their own place in this world. But they need my guidance.

      This is all so tiring for me. Missing my baby who would be turning 5 in a few weeks while raising his bubbas to be productive young men.  Its so not easy. But I plan to keep moving forward and doing the best I can to raise the bubbas to be good men while also keeping Sterling's memory alive and helping in any way I can to raise awareness for the CHD community.

     On Saturday October 3, 2015 I, along with two other grieving mothers, will have a photo showcase called Grief: A Mother's Journey.  It will be at Trickster Art Gallery 190 S Roselle Rd Schaumburg, IL 7pm. We really hope to see everyone there.

Summer is for healing and fun......

     I have decided this summer is going to be all about intentional healing.  Not only healing my deep, excruciating pain from Sterling's death, but also healing my heart from years and years of feeling less then everyone else. I am determined to recognize and change the way I think about myself.

     I grew up the youngest of five kids in my family. The oldest was pregnant the same time as our mom and her kids and I grew up together. My older siblings were older by many years and I have a different dad then they do. My early years were spent with me idolizing them and them, well, it felt like they wanted nothing to do with me. I was often introduced as "just a half sister." I was not allowed to ever be sassy or naughty, like what I now know is typical of kids. When I was naughty, it wasn't forgotten and I was excluded. My early years were spent at Disney, Knotts and the beaches of Southern California. I had fun and wouldn't trade any of it, but I never felt like I belonged in my own family, I was always the outsider. It left some serious scars.

     When we moved to the midwest when I was in middle school, I felt even more like I didn't fit in. I had no friends and a new niece that I babysat that first summer. (I would later adopt her when she was 12 and I was 25). I began to turn to food and gained weight. Because of my early years of feeling like I didn't belong, I never truly accepted friendships. I was always waiting for the other shoe to drop. We also didn't live in the greatest neighborhood and I was embarrassed, which made it even harder to let people in. When I did let them in, I was always looking for signs or reasons to kick them back out again. Food was my comfort and my nemesis. I began yo-yo dieting and exercise fads.

     My early twenties were spent drinking, hard. I still felt like the fattest person wherever I went. I really didn't trust people to do anything but let me down. Parties gave me such anxiety so I would drink. Hard and heavy. I could do anything with my liquid courage. Being out in the world felt a little easier when I wasn't all there. This got me through to my mid-twenties.

     That was when all my friends began having babies and getting married. I still had refused to let anyone close enough to me to actually have a serious relationship with. And I was heavy. I didn't think anyone would find me attractive when I couldn't even look in the mirror without cringing a little. So I decided to foster. I figured the babies/kids would go home and so I wouldn't have to get too close to anyone. Perfect right?

     Except my first placements were these adorable baby brothers who stole my heart. A year after placement I was asked by their birth mom to adopt them. I didn't hesitate to say yes. The ups and downs of the whole process had helped me pack on even more pounds now. And these boys had some developmental issues. Then came another sweet baby boy with a heart condition. Then his two biological brothers came in the next few years. Before I knew it, I had 5 beautiful boys and my grown daughter.

     I gained so much weight and was tired. I was constantly trying to take care of everyone else while ignoring myself. Right before Sterling was born I weighed somewhere around 270lbs. I knew I needed to change. So I cut out soda and began walking. 10lbs came off. Then Sterling was born. I didn't gain it back but I didn't lose anymore. Our family felt complete with him. I began seeing how much my children loved me and that I needed to be better for them. Life started falling into place. I started letting some people in, very few people. My life was still pretty much all about my kids. But it was good. I started seeing that I deserved love just like everyone else. I began slowly venturing out more.

     Then Sterling died. And just like that the rug was pulled out from under me. I questioned everything. I was sure I did something and was being punished.

     But then something amazing began to happen. I joined a gym and began making friends. I wanted to have fun. I wanted life experiences. I began letting people in. Through social media, through talking, through hanging out. But here's the thing, my little family, we aren't like everyone else. I'm a single mom with children who weren't born into the most ideal circumstances. They have scars from that. Then they watched their baby brother die. Then one has Autism. Not everyone can handle hanging out with us. Which makes the insecurities come back.

     I have also lost about 60 pounds or more since Sterling's death, but I'm still one of the heaviest people at the gym and in most of the classes I take. I can't run as fast as my friends. I still come though because I love the way working out makes me feel.

     Why tell the world all of this? Because I am tired of carrying the weight of feeling less then everyone else. I am ready to release it. I am ready to find people who will be our friends even when we aren't the easiest to love (and I believe we have found some of those people already). I am ready to put on my swimsuit and go down the water slide with my kids and not care what anyone else thinks. I am ready to strap on a harness and rock climb with my boys and our friends because its fun.

     My children deserve to grow up not feeling like they are less then everyone else because their house isn't as big or because they don't have a dad or because their skin doesn't match their mom's. My kids deserve people in their lives who will see them behaving in ways that makes them angry but those people will love them enough to call them out on their behavior but they will also be sure to tell them how much they care about them too. My kids deserve to grow up seeing their mom not only loving them but also loving herself and others.

      So this summer we will go on as many adventures as we can. We will not allow people to shame us for being who we are. And who we are is a messy, crazy, loving family with a history no one would envy. We will be stronger and more loving then most because we have been so hurt in the past. We may be a mess but we are such a beautiful mess.

   

Unexpected Healing....

      Last month I was interviewed by one of our local news stations. I was asked many questions and we talked about so many things related to my Sterling and congenital heart defects. I had no idea what the story would look like once completed. I was very surprised at how much focus was on Sterling. I also shared a picture I had been scared to, the one of him so swollen in the PICU. I didn't want anyone to see him like that, I wanted them to remember his shining eyes and giant smile.

     Yet I also knew one day I would share it. One day it would be important for the world to see my beautiful baby boy swollen, with a breathing tube keeping him alive. They would need to see me standing next to him, his blanket draped over my shoulders. One hand cradling his head and the other holding his hand. My face swollen from crying and the look of sheer panic and shock. I knew one day I would need to share, I just didn't know how freeing it would be for me.

     When Sterling first died I couldn't remember him not swollen. I would close my eyes and all I would see was him laying in the hospital bed. I would hear the machines beeping and breathing for him. I could only feel the way the fluid went to his back as I held him after he was pronounced dead. The way my hands imprinted on his back and head. I could only remember and feel my baby in his final moments with us. It took lots of counseling, lots of talking with friends to remember my living, breathing, smiling baby boy.

     I had this one photo of him laying in the PICU. This one photo that I hid away in paperwork. The one I tried to forget. The one that I would come across on accident and it would break me. I wouldn't be expecting it and I would end up in tears every single time I saw it. Then one day I shared it. In a small group of grieving women. And then I cropped my baby and shared it publicly on my Facebook. Then I shared a little more of the picture when I went to Washington, DC. Each time I worried that other people would not remember him any other way. Each time I was surprised with so much support.

     Then it was used in this story in a way that made so many people take notice. First they saw my beautiful boy happy, smiling, loved and then the dreaded picture while the reporter is saying something along the lines of "there was nothing she, nor paramedics could do to save him." I dreaded how I was going to feel about it. But I felt freed.

     So many people who come into my life, they see pictures and videos of my very much alive, happy, smiling boy. They tell me how they have fallen in love with him. They tell me how sorry they are for my loss of this beautiful boy I called son. But they never really understood the horrible sights we saw. I held that part so private. Now more people know. More people were given a glimpse into the horror of what CHD's do to a beautiful baby's body. They see my face so desperately trying to make sense of it all.

     Today marks 3 1/2 years since that photo was taken. One of the three worst days of my life (Sterling stopped breathing on the 1st and officially died the 3rd). Today I looked through his clothes and smiled. Tears came but much later and after some wonderful memories of his beautiful body in those clothes. Today I miss my son and would still give anything to have him here again, even if only for a moment. But today I feel a little lighter. The weight of holding tight to the horrors of those days are lifted. Sharing his life and his death are healing my heart.