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.

       

   

Fear

     "Fear in an emotion induced by a threat perceived by living entities, which causes a change in brain and organ function and ultimately a change in behavior, such as running away, hiding or freezing from traumatic events. " All my life I have let fear dictate.

     I used to have a dream of working on a set. I loved the creativity of being on a set. All the people running around. The way the scenes were set up and filmed. The way it was all edited to create a movie. A movie that could bring people to tears or induce laughter, maybe even jump in fear. I wanted so much to be a part of that creativity. I didn't care about being on camera or any sort of attention, I just loved the art of it.

     I also have a confession to make, I have been a member of a gym, off and on, since I was 13 years old. I loved being able to lift heavier then most of the people in the room. I loved the way I felt during and especially after a good workout. But I never stuck with it. Why?

     Fear. Fear of failure kept me from my dreams of working on a set. Fear kept me from the college of my dreams that would have helped get me to a creative career I dreamed of. Fear also would take me out of the gym. I was afraid of what other people would say about me. Afraid they would tell me I didn't belong there because I didn't look the part.

     Fear of rejection or failure has kept me from doing the things in life that brought me the most joy. I was never able to find a mentor in either area of my dreams who would give me a boost of support when I needed it. And so I gave up. And I gained weight.

     Then Sterling died. And I felt for a while that I had nothing left to lose. For a moment in time, the fear was so profound, it kind of stopped meaning much to me. I was numb. And so I just began doing whatever I wanted to do. With phenomenal outcomes. But then I started getting comfortable again. And the fear slowly has begun creeping back.

     I find myself going back into old habits. Doing things I really don't want to do because it feels "safe" and the fear of failing at anything else is so debilitating that I just would rather stay home and hide away from life. So I became very scheduled again. And comfortable in the routine.  Until that routine began to be taken from me by things I had no control over.

     So I have decided that fear cannot rule me. Not like this anymore. Life is so short.  A gift from Sterling was seeing this. The way he used to smile and really just the joy in his eyes. The way he would grab me and kiss me and hug me. That is how life should be lived. Find the joy in the everyday. Grab life and just love it! Flaws and all!

     So I am going to be doing things that may not make everyone very happy with me. But I only have this one life and I already have spent so much of it living in fear, being "safe" and the worst thing still happened. Its time to see what I can do in the time I have left. Life is too short to keep looking back with regret.

1,230 Days into this grief thing....

     Failure. What does it mean?

 "Failure is the state or condition of not meeting a desirable or intended objective, and may be viewed as the opposite of success."

     But what does it mean to me? I wish I knew. Because most days I feel like I'm failing. Failing in my fitness. Failing in my career. Failing my children. Some days I just feel like I am failing at life in general.

     I don't know what is going on with me right now. I just want to give up. It's hard trying to succeed when it feels like I am working against something all the time. My heart is healing, it is. But I just have moments when the grief comes crashing back to me. At this stage, it feels like it comes back even harder then before.

     Is it really though? Or is it just that most days I feel so good so when the grief wave comes crashing into me, it feels like it came from nowhere? I haven't been anticipating the waves anymore. So maybe the waves aren't any stronger, but I have my back to them now, and I don't see them coming. So they crash into me and knock me over.

     I have also been so busy lately. And there have been births and deaths and those things bring up so much for me. I have also put my faith in people to be there for me, only to be left feeling more alone then before. I keep telling myself life is worth it. These ups and downs are just a part of life. Don't take it so personally. But I can't help it.

     This up and down and competitiveness that seems to be such a part of life, I hate it. It makes me feel like a failure. It makes me long for "something else" even when I don't really know what that "something else" is. I know true joy can only be found within. I will get back there. I know I will. Its just been really hard lately. And I feel like I am failing and am so alone in it.

   

Congenital Heart Legislative Conference 2015

     I had the most amazing experience last week while in Washington, D.C. for the Congenital Heart Legislative Conference. I met so many wonderful people who share my passion for CHD advocacy. I was able to help out a little behind the scenes and even check in many of the participants. I learned so much and am still processing it all.

     We were there to meet with our legislators and ask them to support NIH research to prevent, treat and cure CHD. For $10 million in CDC funding for data collection and public health research. And for $250 million in funding for the Department of Defense Peer Reviewed Medical Research Program. We would like them to take action by signing the Congenital Heart "Dear Colleague" letter. To join the Congressional Congenital Heart Caucus. And to submit a Congenital Heart Appropriations Request.

     If you don't understand the last paragraph, no worries. I had it explained to me and still had a hard time remembering it all. The important thing to know is that this is to support funding for research and for data collection. Research to help those we know have CHD's treatment and hopefully one day a cure and to better detect those we don't know have them, like Sterling. Our kids with CHD's are becoming adults with CHD's (which is a testament to the research already done!) and there just isn't a whole lot of data out there for treating them.  There also aren't very many doctors with experience in treating them. These things need to change. Supporting the above will help change that.

     I was very honored to meet with our representatives and our senators and to share our stories. In my group we had 2 parents whose babies died from CHD's, one knew of the CHD and I of course did not. Then we had 3 adult CHD patients and 1 friend of a patient. I was so nervous but they helped me out and I soon discovered that our stories are powerful. Watching the staff members come out with smiles and looks of "lets get this meeting done" turn to sadness and taking the time to ask questions and really try to understand what we were asking for and why it was so important.

     I came home exhausted but feeling so empowered. I will forever be grateful Sterling chose me to be his mom. I would not be who I am had he not. I would also not be where I am today had he not died. It's not always easy talking about his death, but it is so very necessary and healing knowing he is making a difference. I will continue to share until we have more research and more answers for CHD's.

Healing....always

     I have had one of the busiest months ever. I have felt like maybe I was drowning more then a few times. But I have made some wonderful friends in the last three years and with their support and encouragement, I have felt like I can do this. I am so grateful for them.

     I went to a celebration of life 10 years later (10 years after his son's death at age 13). I wasn't sure what it would be like. I have to tell you, it was beautiful. And it reminded me of when I first met this man, the father to this boy. It was three months after Sterling had died. I was looking for someone, anyone to come along with a magic wand and tap me on my head and take away the excruciating pain I was feeling every moment of every day. I was desperate to hear some special words or something, anything to "cure" me.

     I learned that day that there aren't any special words or wands or anything anyone else can do to take this pain from me. This pain was a result of the deep love I had and continue to have for my son. It was necessary. And I had to feel it, all of it, if I wanted to heal.

     I will never forget his mom that day telling him to please take me under his wing because I was hurting so much and I needed his help to learn to heal. He told her and I that "this one, she has what it takes, she is going to be ok. She is going to make it." I thought he might be a little crazy. I still literally felt gutted and in physical and emotional pain. I was still secretly pleading with God to just be God and give me my son back, raise him from the dead. Turn back time. Something. Anything. Or please just let me die. And here was this man who was giving a seminar about grief and healing, telling me I was going to be ok but not really giving me step by step instructions on how I should do that.

     Fast forward 3 years. I am the healthiest I have been in my adult life. I have so many wonderful, supportive friends in my life who encourage me daily to be the best me I can be. I still ache for Sterling but I am able to live again, to find joy. And I am leaving tomorrow to go to Washington D.C. to share our story with legislators to let them know how important research and data collection are.

     I still have pain in the longing for my baby. I still question why us at times. I still have moments when I am sure outsiders may want to strangle me because my moods are all over the place. But I am healing. Every single day I am choosing to heal. And I believe, that is the secret. Choosing to forgive others for actions that may have contributed to his death. Choosing to go to the gym when I would rather not because I know how good I will feel when I am done. Choosing to share his story and pictures of him, even when some of those memories are painful. Because it may help others. It is all a piece to the healing puzzle.

     So tonight as I tucked my boys in and tears fell from their eyes, I know going is a good thing.  For all of us. It is a part of our journey. A journey I never thought I would live. But one I am going to embrace. We will all be ok, better then ok. And Sterling would be so proud.

New Year

     We made it through another year. We lived more. We loved more. We learned more. We healed a little more.  All the while missing our sweet boy and wondering who he would be today.

     In 2014 Sterling took me to the senator of my state's office so I could tell his story. So I could show his picture and let them know that Sterling lived. He was loved. He is loved. I got to tell them how his life and death has impacted our lives. It was such an emotional thing to do. Definitely one of the highlights of my year. Sterling's story was one of many shared over the year to encourage more funding for research. And we got it.

      2014 found me working out hard. I mean almost every single day. Several hours a day. I added classes that pushed me harder then I had ever been pushed. I didn't always feel like I fit in these classes. I still don't feel like I always fit in these classes. But I keep going anyway. It quiets my mind for a few hours. I'm being pushed so hard I don't have time to think about life. I don't have time to feel the sadness. And I have met some wonderful people who support and encourage my fitness goals. Working out really has become something I cannot live without.

      2014 also saw huge growth in the bubbas. Both physically and emotionally. They have worked hard to understand things many adults never have to deal with. I am so very proud of them. I know Sterling would be so proud of them as well. They still talk about him all the time. Not in an obsessive way, in a way that makes it clear that they remember and love him.

     My hope is that 2015 will be a continuation of the growth our family accomplished last year. I am excited to see where Sterling takes us. I am excited to see my boys continue to grow. I am learning to embrace change and to allow more people in to our lives.

     In December of 2011 when I was gathering Sterling's things from the hospital and preparing to go back home without him, I remember saying to my sister that there was no way I could do this. I asked her how I was supposed to live without my baby in my arms. I told her I couldn't do it. She and the nurses told me I would take it minute to minute. Focus on breathing. They said then I would go 5 minutes, 10 minutes, an hour, several hours, then before I knew it I would be going days and weeks and months.

     I didn't believe them then. I didn't believe that living was possible. Thriving was completely out of the question. There was no way I could go on while in such pain.

     But they were right. The pain is just a part of me now. It doesn't control me. I miss Sterling just as much today as ever. I always wonder who he would be, who we would be had he lived. But we are living. Each day. We live. We love. We learn. And before we know it another year is over, a new one is beginning. This is life, it goes on, even when we don't want it to. I'm learning to be thankful for this.