Thursday, February 28, 2013

Being heard

     From the moment I handed my baby's body over to a coroner and returned home to my children without him I have been afraid. I had no idea why Sterling stopped breathing that day. He seemed to be teething, maybe getting a tummy bug. Nothing that should have caused death.

     So I not only was trying to wrap my mind around the fact that Sterling was never coming home again and what that really meant. But I was also faced with the knowledge that without a cause of death there was no way to protect my other children from the same fate. And illness found us right away and dug its heels in. Bouncing from one person to the next. Terrifying doesn't even begin to describe how I felt.

     Then came the knowledge that Sterling had congenital heart defects. When I began researching I realized that his brothers were at risk. Their little hearts could be filled with defects. They could appear healthy until one day they would just stop breathing. I wanted them checked out. But our doctor thought I was just paranoid and didn't think testing was necessary.

     I am not sure if I can explain what its like to see your child vomit  at the gym (this is exactly what Sterling did one hour before he stopped breathing) and on the drive home he falls asleep. In my morror I see his little head fall forward and I can't breathe. I yell his name. No answer. I ask my oldest son to check to be sure he is breathing. My ten year old son knows how to do this now. My four year old does too. He is breathing. And I try really hard not to cry. This is my life now. This is my children's life now.

     I called a doctor today who agreed to help me and the boys. He will look over Sterling's autopsy results. He will order testing for the boys. He understands my fears. He realizes that Sterling seemed so healthy too. This doctor doesn't treat me like I am crazy. He is actually going to help me. And the weight lifted today. Knowledge is power. Knowing that my boys have healthy hearts or even finding out they don't....either way knowing what we are up against is better than not knowing anything at all.

Wednesday, February 20, 2013

I asked...

     I am embarking on a journey this year. It is one that I am not used to. Yet this last 14 months have made me a different person. I used to do for others to the point that I neglected myself. I had gained a crazy amount of weight and was used to not really having energy. I was so in love with my kids that I thought it was ok to neglect me. I can't believe how wrong I was.

     When Sterling stopped breathing that day I had laid him down to rest with my mom watching him, I usually either held him while he slept or my mom did. That day I was going to get myself some lunch and prepare snacks and get things ready for the afternoon when everyone got up and the big kids came home from school. I never did get that lunch. Instead I would be doing CPR on my baby, screaming frantically for help and riding in an ambulance waiting desperately to hear my baby's cries.

     I never did get to hear my baby's voice. Instead I sat vigil at his bedside, holding him, praying over him, begging for his healing. I couldn't eat, barely drank. Two days in the PICU with nothing but water maybe a bite here or there but I was so in shock that eating made me want to vomit. The next few weeks were the same. I know people brought food, thank God they did! My family had food because all I could do was try to understand Sterling was never coming home.

     Then the illness began. Strep. Lovely strep that found us, heart broken and decided it would stay and make its rounds. I lost about 20 pounds in the first two weeks after Sterling died. People would tell me how great I looked, I would look at them and smile and say thank you. Inside I would scream "you just don't get it!! I would gain another 100 pounds if I could just have my baby back!!!" I would spend the next year going back and forth in my grief. So I would eat for a while then I would get flashbacks of those days and be unable to eat. After the first 8 or so months I had lost 43 pounds total.

     The boys and I joined the gym and I began walking. Without the extra weight I was able to walk 3 miles a day. By doing that I was getting stronger and had energy and I began running, racing my boys in parking lots or down our street. They loved it! I loved it! They finally had a mom who could run and play with them. They absolutely love that I can do this with them now.

      That's when I realized that is another gift from Sterling. His death has taken so much from our family but the gifts he has also given are slowly making us better. So this year I decided that I will try my hardest to lose another 43 pounds. This time on purpose. This time to honor Sterling. When I am racing his brothers I feel him with us. I feel him laughing. I FEEL him!! When I am working out and I think I look like a fool doing Zumba or I am not as great as others on the treadmill or in the training room, I FEEL my Sterling! I feel him with me, I feel encouraged by him to get healthy for his brothers, for ME!

      I will take this gift from Sterling and I will make a change with me. I hope it will trickle down to my boys. Then I hope to work on helping others in Sterling's name. I feel so called to find a way to help other babies like Sterling to get the proper testing so that their families don't have to live the hell we have lived. Always and forever sweet boy.

Sunday, February 17, 2013

Diaper Bag

     I have tried many times over the last 14 months to clean out and put away sterling's diaper bag. It served as my purse for the 13 months 2 weeks and 6 days Sterling was living in his earthly body. I am beginning to open it and its like a time capsule. Receipts dated no later than November 2011. Except for one that was dated 12/8/11 and its filled with clothing bought for Sterling's bubbas and I to wear to his visitation and memorial.

     The bag is covered in a layer of dust. In the big compartment is his blanket. It first belonged to his big brother and was passed down. Its also the blanket that I draped around my shoulders while in the PICU. Under that is his cute little Hanna Anderson jammies he was wearing that day. His pacifier is still attached. I can still smell where he threw up and got some on him. Gross, I know, but its my baby. Everything else had been washed by his big sister because she, like all of us, was so sure he would be coming home. So she wanted to help me by having everything clean and ready. I want so bad to be angry about it but I can't, her heart was in the right place when she did it.

      Then comes all the little stuff. His bottle filled with water, his powdered formula dispenser with three compartments filled and ready for a bottle. Extra pacifiers. A comb. Lotions. Hand sanitizer. A lone sock, his feet were still so tiny. Papers from when we went to Shedd Aquarium for his first birthday. His little hat from Brookfield Zoo. One of his spoons. Crayons and paper for the big boys. A time capsule from when I was more organized. His bag shows all the stuff we used to do, all the places we went.

      I can still smell him on those jammies. My 6 year old just quietly saw what I was doing and he came over, no words spoken and he gently touched the jammies and drank in a big smell too. "I can still smell Sterling....I miss him so much...."  A few tears and now I will take pictures and document and throw away most of the papers. I will place his personal things back in the bag. Wipe off the dust and put it safely in a bin with the rest of his things.

      I miss him. I just wish for one more hug, one more kiss one more anything with him. Always and forever sweet boy.

Saturday, February 16, 2013

Cleaning....

     I decided to clean my house today. Part of me is ready to really clean again like I used to. The other push is that my license renewal is coming up and with that comes a home inspection. No, my house isn't that bad. But its amazing what piles up over 14 months when you are healing from the death of your son. I have cleaned over the last 14 months. I have put most of Sterling's things carefully away for when I am ready to look at them.

     I have tried a few times to pull out Sterling's clothes and toys and hold them and remember him. Problem is I never get very far. One or two shirts in and I am in tears. Sobbing, hard, ugly tears. I know my son was and continues to be a beautiful gift. I know I am a better person for having had him in my life then if I had never had him at all. I know we will do great things in his honor. But when I am holding his little "greatest little brother" tee in my hands all I can think is how much I wish his chubby little self was in the tee. All I can think is that my baby was stolen from us. All I can think is that I want him back. Then I get cold, begin shaking and the tears and moans.

     Today while cleaning the kitchen I came across a bottle and bib and little baby bottle cooler that we used for day trips. I thought I had put all his stuff from the kitchen away. But here were little reminders of Sterling tucked on shelves under things we rarely use. I loved finding these things. It brought me a smile. It felt good and I felt great cleaning and organizing my kitchen the way it used to be.

    Then I took a break. Went to Target. Took the boys out for dinner. Came home and thought "why not tackle the dinning room?" That's when I found a brand new pacifier, never used. Then came a little pair of Nike's and a pair of Puma's. These things Sterling never used. These things bring tears. He would be too big for them now. I know this. I should be packing them up to give them to a friend. Instead I am cleaning off the dust and wondering if I should keep something he never used? I have a bunch of brand new Gymboree clothes I bought him for Christmas that came on the day I was at the funeral home making arrangements for his funeral. One of those outfits he wore for his visitation. "Mommy's Little Cub" imprinted on the onesie.

     Today I cleaned. Today I threw away some things that just a few months ago I couldn't. I hated cleaning because I knew with every wipe of the dust I was wiping away Sterling. That dust was here with him. Those things were here with him, I may have even bought it with him. Up until today I didn't want anything to change in this house. Today I decided that we could change things. We could even let things go. Those things are not Sterling. They never were and they never will be. Sterling is an amazing little love who will never be erased from our lives. Even if everything changes, and I know it will over time, Sterling was and is and forever will be love. He will always be a part of us. Always.

Saturday, February 9, 2013

Hindsight is 20/20

     Sterling was a happy baby. He rarely fussed. I held him often and believe in attachment parenting. For us that meant that Sterling often napped in my arms or his Grammy's arms. He spent lots of time on my hip or riding in his Ergo carrier right on my chest. I made sure his bottles were waiting for him so he could be fed as soon as he let me know he was hungry. He was talked with and played with and doted on by me and his Grammy and his sissy and his bubbas. He smiled often and laughed often. He rarely cried.

     I have no idea if that is why Sterling lived for as long as he did with the defects he had. I would love to believe it though. He looked so chubby and healthy. He did however have some signs, I had no idea then but I know now. Sterling liked to sleep. I thought I got lucky. He did wake up to eat at night as a tiny baby but by 3 or 4 months was sleeping 6-8 hours at night.

     At a year old and up until he died at 13 1/2 months old he was sleeping 8-10 hours at night and still doing a morning nap and an afternoon nap. If we went anywhere in the car he was out within minutes. He would play and crawl but he wasn't walking yet and showed no real interest, he did cruise the furniture though. I remember thinking if he was still sleeping so much I would bring it up at his 15 month check up. I also remember he wouldn't hold his bottle. I didn't know if it was a delay or he just didn't want to. I enjoyed our bonding time with his bottles and thought he probably did too. I wonder now if he just didn't have the energy to hold his bottle and drink at the same time?

     Sterling had several respiratory issues and he took twice as long as everyone else to recover from a cold or illness. It worried me but with his prenatal history it wasn't uncommon. His brothers were the same and usually by the second and third years it got better for them.

     The more I learn the more I see opportunities where we could have done testing. Maybe Sterling would still be here, maybe not. But we would have known what we were up against. I fully believe that his prenatal history played a role in all of this. Both from missed prenatal scans to check his heart and in the fact that his respiratory symptoms could be explained by his history. I fully believe that for babies like Sterling, with similar prenatal history, there should be better screenings. I hope that one day all babies like Sterling can have a better fighting start at life.

    

Thursday, February 7, 2013

Wednesday, February 6, 2013

Answers...

     It took nearly eight months after Sterling died to get some answers as to what took him from us. I will never forget that warm July day when the phone rang and I saw the number. The blood drained from my body as I listened to the coroner tell me that my beautiful baby boy had "multiple congenital heart defects" and that his cause of death would be listed as "natural." I began shaking and crying. Not the small, keep it quiet cry. No, I had that primal, from deep within sobbing. Sterling was thirteen months old. Sterling was chubby and healthy and one of the littlest loves of my life. What could possibly be "natural" about his death?

     I did what I have learned to do. I allowed myself to cry, to question, to be angry and to feel whatever I needed to feel. I was told there was nothing I could have done to prevent his death. I began looking into congenital heart defects and I was stunned. 1 in every 100 births have a CHD. Its underfunded and its not researched at the level as other childhood diseases. I also learned there are 35 known defects and was asked by other CHD moms which ones Sterling had. I didn't know. I was scared to find out. Why? I really don't know.

     Yesterday I finally called and asked for the names of Sterling's CHD's. Today I got a page full. I originally counted nine but I think there are eight. I am trying to google and learn what they all mean. Could he have been tested with any kind of test and could they have been detected and would Sterling still be here if they had been? Does his birth history play any role? Are his bubbas at risk? I  am trying not to let the fear consume me. But it terrifies me that his little heart could have so much wrong with it and yet he looked so healthy.

     February 7-14 is Congenital Heart Defect Awareness Week. I will definitely make sure I do my part and spread awareness. I will focus on doing that and in doing so find Hope that Sterling's death was not in vain. Sterling will educate others through me and through his bubbas. Please remember Sterling during CHD awareness week. If you have a Facebook page post a fact about CHD's. If you blog maybe do a blog post raising awareness. If you can sneak it into a conversation please do so.

     Sterling was and is Love. Its the one and only thing that has helped me to see the light again. Sterling knew he was loved. Its in his eyes in every picture I have. It can even be heard in his voice in the videos I have. Sterling was doted on by his big brothers, or as he called them his "bubbas."  He was a Momma's boy through and through. Sterling was and is Love. And my soul knows he has returned to a place of Love unlike any other. I just miss him so much.....