Monthly Archives: October 2015

Self reflection 

Day 27: SELF PORTRAIT- Who am I today? I’d like to say I’m the same person I’ve always been, but that’s the furthest from the truth. I’ve actually been able to see myself change for years now. The person I am before Parker and after Parker hardly recognize each other. I think I’ve pretty much been a decent person my whole life, but the understanding of me, of life, of what matters significantly changed the day my daughter was born. I watched myself go from an afraid, uncertain, angry, alone girl to a mom within a couple of seconds. Because of Parker being born and facing difficulties from day one I was still scared, but I turned into a warrior- my fear powered me rather than paralyzing me. I went from uncertain to researching and gaining any and all knowledge I could. The anger and loneliness took longer to change. But because of my anger for the first few months my relationship with God grew. My anger only made me fully realize that I could help with the possible, but I had to leave the impossible to Him. And little by little my anger changed to faith, and hope, and love. 
I, again, changed as a person as I watched my child die. That situation will change any and everybody. Because I watched her transition I found strength in myself I never knew was there. Because I had to let her go and choices regarding her life had to be made I found a unconditional, unselfish love on a whole new level. Letting your child die because that’s what’s best for them is the most unselfish thing a parent can do, in my opinion. I could’ve kept her here essentially on life support because I never wanted to lose her, but the doctors made it clear that’s how her life would’ve stayed, and it would’ve been keeping her because it was easier for me. There were many times during her decline that I wanted to tear up her DNR and drive her straight to the hospital to ‘save her’, but that would’ve been for me, not her. Because I lost my child my faith has grown even more. I HAVE to believe she’s in Heaven waiting for me – it’s honestly one of the main things that keeps me going. Knowing she’s watching over me, I’m making her proud, that it’s her showing my signs, and has truly never left my side is what gives me peace. Because Parker passed I found my true calling in life – to help children like her and families like our’s. It’s what feeds my soul past the hurt, past the pain, past the grief. Because my child died my understanding of people has grown. I used to be judgmental and it wasn’t until I was the person having a breakdown in the middle of Kohl’s for me to truly understand that we’re all fighting a battle of some sort. We’re all going through something that we don’t let the world know. I try to approach every situation and person with that in mind. I remember crying in the Walmart parking lot one day because I ran there to get out for a minute and to grab something and I literally looked like death. I’m sure my clothes didn’t match, I couldn’t remember the last time I showered, and some people really took notice. Two girls were even clearly talking about me, laughing, pointing, whatever. As soon as I shut myself inside my car I burst into tears. My eyes were already swollen, my face was pale with red patches, I felt like all I did was cry. I wanted to run back inside and yell at those girls, ‘Don’t you know my child is dying?!?!? I look like hell because I’m living in hell!’ But I didn’t have the energy for any of it. I barely had the energy or desire to speak to anyone. As people walked around living their lives, enjoying the sunlight, going about their routines, I was about to drive myself back to the nightmare I was living in. Their lives were continuing while I felt mine was ended. It’s experiences like this that make me want to smile at everyone, smile all the time now – what if it’s what one person needs? Before the life and death of Parker I rarely cared about more than myself, now it’s quite the opposite. Because of Parker I’m a better daughter, sister, and friend (still working on the friend part because my grief can interfere with my friendships sometimes). But most importantly I’m a better stepmom and partner to my husband- as a family we have gone through what should have and could have easily torn us apart and only came out stronger in the end. 

I’m still broken, a part of me will always be. My heart is so broken because I was able to love so deeply. My eyes can cry so hard because I’ve witnessed a true miracle. I can stand so tall because I’ve felt the deepest despair and survived it. I can smile so big because I gave birth to an angel. I know I’m a much better person than I was before Parker entered my life and I’m a better person because I had to give her back to God, but I’m still not as good as I’ll be. Though I’m working to get there. 


Beauty in heartbreak

Day 12: NORMALIZING GRIEF – Pretty sure there’s nothing ‘normal’ about grief. But if something was to be ‘normal’ I guess it would be the different emotions we go through, like guilt, anger, regret. I tend to not regret much about Parker’s life besides not taking enough pictures or videos. But there’s certain parts about her death that I wish I could do over, do differently. 

The night of October 19, 2012 I had actually slept in my own bed with Phillip beside me. I had been sleeping in Parker’s bed with her for the previous 2-3 weeks. I slept good. I was exhausted. We were all exhausted. We had been holding our breath, anticipating the inevitable. She was swollen from third spacing. She hadn’t eaten in days. She hadn’t woken up or been aware in days. I laid next to my daughter as she slowly died, stroking her face, wrapping her ringlets of blonde hair around my finger. Trying to memorize every inch of her, knowing I wouldn’t have her much longer. 

As soon as Phillip and I walked into Parker’s room on the morning of October 20, 2012 we knew it was to be her last day with us on earth. It was a long day. The minutes passed slowly. It felt like eternity in the worst and best ways possible. 

I remember at one point, maybe around 6pm we watched her heart rate and oxygen saturation numbers plummet. Like an out of body experience I remember wailing, ‘No, please. My monkey. My monkey. Not my monkey. No. No.’ And her numbers immediately jumped back up – not where they needed to be, but back up. I felt horrible. Such a weird feeling. I apologized to her at least 50 times. ‘I’m so sorry Parker. I didn’t mean to scare you. It’s ok. Mommy will be ok. I promise. It’s ok. I’m so sorry baby.’ And on and on and on. It was a complete surreal feeling to be telling my daughter it was ok to die. But it was. Her death was not pleasant. Her lungs were filling. Her kidneys were completely shut down. It was time. It was time for her to transition to her next journey – to the beautiful angel with permanent wings she was to become. 

After apologizing too many times, with my hand laying across her chest, counting her breaths, anticipating each thump of her heart, I began to sing to her. I sang our special three songs over and over to her. Softly. Trying to speak to her soul. Trying to comfort her. Trying to comfort myself. Her numbers slowly went down. The last looked her heart rate was 16 beats a minute. Her oxygen was in the 20’s. As I sang ‘I can’t say that everything’s ok, ’cause I can see the tears your crying. And I can’t promise to take the pain away, but you know I won’t stop trying. I’ll be the angel by your side. I will get you through the night. ‘Cause when you’re down and out of time and you think you’ve lost the fight let me be the angel, the Angel by your side’ Parker took her last breath in my arms right before 7pm. I searched for one last heartbeat, but it wasn’t there. I’m sure mine skipped a few beats as it broke. As I wanted so bad to give her mine. To trade her places. But she became healed and whole at that same time. I knew she did. My life stood still and was oddly at peace while her new life was just beginning. She transitioned into an angel right before mine and Phillip’s eyes. That part was peaceful, surreal. There was a house full of people just outside her room but in that moment it was just us – Phillip and I holding our girl, kissing her goodbye, and saying our ‘I love you’s’ as the angels came to take her home. And it was beautiful in the most heartbreaking of ways. 

My untold secret 

(So late – my hardest one to write) Day 9: FAMILY- What is my family like now- after losing Parker? My family definitely consists of people with and without my same blood. Like all families our ties between us can loosen and tighten throughout time, often returning to the tight bond at some point. I’ve lost and gained more than a handful of people that I’ve considered family. Child loss changes lots of people – not just the parents and siblings.   
One of the hardest things I’ve had to accept is that my immediate family (Phillip, myself, and the boys) will never expand. That we will forever remain just the four of us. That I might always feel we’re somewhat incomplete. I’ve never openly spoke of this and try to avoid most questions regarding another child. Please know this is an extremely hard topic for me. A topic that runs through my head a lot, with my mind changing, understanding, not understanding, having baby fever, enjoying the freedom of no small children to care for, each day can bring a different emotion. After I had Parker I was certain I wanted no more children. I was afraid of ‘replacing’ her, for that couldn’t happen. I was afraid I would be unable to even handle a child, especially if the child was ‘normal’ development. I would be like Ricky Bobby not knowing what to do with my hands. (Talladega Nights reference) 

A little before Parker’s second angelversary something inside me became at ease and tormented at the same time – for once I was unsure about what I wanted when it came to children. Some days I would yearn so deeply and others I would thank the stars above that it wasn’t our situation. Teenagers can greatly subside lots of baby fever. Knowing that our situation is very complicated, would be costly and lengthy, help me to accept that this is what it is. That I will forever be an angel mom, stepmom, and grandmother one day but nothing more. That I fear my parenting job is over, but what if I’m meant for more. That I will never hear the words ‘I love you mom’ from a tiny person. I will never experience those young years of exploration and learning. Or see the years I’ve missed 3-13 (Parker passed at almost 2.5 years and I met the boys when they were 14 and 15). I’ll never experience lots of things that I know I once dreamed of when growing up – when you picture what your life will be like. I have to have faith that this is my path, this is where I’m meant to be, meant to do. I know there’s a reason for my situation, that my journey was carved out long ago by Him. 

I’m not putting this out here to be encouraged to have a child, it won’t happen, adopt, foster, or anything like that. Nor is it to have Phillip and I looked at any differently. Honestly, this is probably one of my deepest secrets, what’s never spoken of. I’m putting this out there in hopes it helps me to heal, to know I’m not alone, to openly share what it’s like for a mother who has lost her only child. Maybe another parent can relate, because a ‘rainbow baby’, as they’re so often called, isn’t always the way it goes for so many reasons. This picture always brings such raw emotions for me. 

So while my family is great, the best support system there is, I feel something is missing – my daughter, part of me, maybe something else too. Ugh. Grief is hard and these feelings are my hardest to explain. 

Day 5: Empathy

Day 5: EMPATHY- It asks you to write about what someone should say to you during grief. Quite honestly, I don’t know. I can’t even recall things that were said to me after Parker died – unless horrible and hit a nerve, but there’s already plenty of articles about what you shouldn’t say. It took probably close to a year before I could even remember who came to our house that evening. I remember lots of details surrounding her, but really none of myself – who comforted me, who I cried to, what I did or said after it was said and done. It honestly wasn’t important to me at that time. She was the only thing that mattered. My world had stopped turning. I was so numb. I’m surprised I moved or spoke – I guess autopilot turned on. It was like I wasn’t me. I had left. I had went chasing after my child, trying to keep her. My soul tried to escape, I didn’t want to feel the gut wrenching pain. So as to what to tell others to do, I haven’t a clue. I won’t pretend I do. I do know some things that might help a grieving parent though. Things that helped my husband and I or are still helping. 

First, see someone. Go to a counselor. Grief counselor. Family counselor. Whatever. We started going when Parker got put on hospice, we figured it would take sessions just to tell him our back story and what we were preparing for. We still go, every two weeks, like clockwork. It has over time just evolved into ‘life counseling’. It’s still a lot about Parker, about grief, but sometimes it’s just about life, about us, about teenagers and the struggles of parenting (especially being an inexperienced stepparent). Counseling has been very important for the both of us and our healing process. 

Please go with your emotions. It’s ok to cry, to be pissed, to be hurt, to have questions, doubts, and fears – they’re all healthy. It’s the keeping them in that’s not. There would be times I would storm out of the living room only to slam the door, collapse on the bed, and bawl. Sometimes just out of anger. It wouldn’t be uncommon for me to go through every emotion possible on a drive home from work. I learned that for me I had to give myself a time limit. One that felt good in my heart. A heavy day might get a 20 minute allotment, while a spontaneous cry might get 5. I would literally look at the time and tell myself ‘go’. Most times I would find I was actually ok and had worked through ‘my moment’ before my time ever elapsed. I would sometimes scream, cry, wail (ugly cry), sing, hit the steering wheel, or string every imaginable cuss word together- or do them all in different layers. But I found if I held them in they only intensified – and always left me feeling more broken and damaged. And after a ‘moment’ was over I was then able to fully embrace whatever else was happening at that moment in my life. 

It’s only as uncomfortable as we let it be. For whatever reason, child death or just death itself, is a very uncomfortable thing for our society. As uncomfortable as you feel trying to find the right phrase as to not to entice your own meltdown others are uncomfortable too. They can sense it. I still struggle with this daily but am making a conscious effort. One way is to always speak their name. Never stop speaking their name. Just because your child has died, it does not mean they didn’t exist. They very much did. And they very much shaped your life and the person you are. Let that be known. I know if I casually say, ‘yes, I have two step sons and a daughter in Heaven’ (the answer to the hardest question anyone asks me: do you have any children? At first I would say no, but that did such an incredible injustice to my heart. It didn’t feel right.) people will be taken aback- they always are- but they will move on in the conversation in a genuine way. Parker is a very active and present part of our lives and our family and I wouldn’t have it any other way. You will encounter plenty of uncomfortable questions resulting in uncomfortable answers, but it will get better and you will find that when those answers stop being uncomfortable to you so do the people asking. They won’t always be the ‘right’ answers, but they’ll be real. 

Find something positive in your experience- anything. Absolutely anything. (My husband will tell you it’s to build a race car. Ha! Though that has helped us in it’s own way) It might be that you found new friendships in your heartache. It’s true when they say during your darkest times people will reveal their colors. I used to get upset over this and the fact that it was true and unfolding in front of me. Then I found the positive, let go of relationships where I was the only one still holding on, and embraced new ones as they revealed themselves to me. Another positive you might find is turning your ‘bad’ into ‘good’ for others. I took all that I learned, fought, and overcame in my life with Parker and decided to start The Parker Lee Project ( to help families like I mine. I now run a nonprofit organization dedicated to helping families of children with medical needs obtain the supplies/equipment, education, and support they need. But whatever it is, find something positive and go with it. 

And more than anything, it’s ok to be happy. This was so hard and took so long for me to accept. But once you realize it’s ok, a weight will be lifted. I felt guilty for loving life even though she wasn’t there. I felt guilty for going to have drinks with my friends. I felt guilty for enjoying really anything. But none of us would ever want to leave our loved ones behind and know they’re miserable. So why wouldn’t our children be the same? I can remember and honor my child just as, if not more, effectively through smiles instead of tears. Life is meant to be loved and enjoyed. Don’t regret anything in case another loved one leaves too soon. 


Day 4: 

Day 4: DARK + LIGHT – Dark and light? Good and bad? I once thought these two couldn’t both exist in the realm of grief. I was wrong. And I’m still learning about the new ‘lights’ as they come. 
Oh the dark side, I know it too well. Anyone who has lost a child can tell you of all the dark places. In the darkness where the tears cover your face. The blankets that hide your frail body from the rest of the world. The rock you wish you could actually climb under. The many masks you learn to wear daily in hopes of concealing your true pain. Darkness becomes a very present part of life after you’ve lost a child. 

Finding the light can be hard and leave you feeling guilty at times. I was afraid to be happy at some points following Parker’s death. I was fearful of the judgement I thought would come with it – it turns out I was the one judging, judging myself. I hated myself for wanting to smile. I remember we had people over after Parker’s funeral – our friends and family accompanied by food and alcohol (much needed) and a picture was taken of me with 3 of my close friends. I was smiling. I can’t remember now if it was fake or not. Pretty sure it was real because even though the situation felt surreal the love and support was very much true and real. But I hated that picture for a long time, probably until recently. I was mad that I could smile and have fun while my daughter had died only one week before. I was mad that any of us could muster a smile. I mean we had just celebrated her life. But what are you suppose to do? Stand in a circle crying? Maybe singing kumbaya? Nope. 

It has taken me a while to see the true light of this situation with the dark being so present and overpowering. But in the light I see the beauty Parker brought upon this world, the hearts she opened, the lives she changed. In the light I see her beautiful wings. Her dancing. Her singing – oh how she loves music. Her practicing the word ‘momma’ for when we meet again. In the light she’s free of all that ailed her here on earth. There isn’t anymore ICU visits like above, no trachs, no feeding tubes, no seizures, no more restrictions. She’s free and she’s beautiful. In the light I see her smiling and proud of all Phillip and I do in her honor. In the light she’s making us who she’s always seen us as, she’s guiding our way, and watching over us. In the light I see a pristine view that we will share together when my time here is done. 

You see, it’s now that my darkness has cracked more and more over the years the light has begun shining brighter and brighter. My heart has always known about the light but didn’t always focus on it. I still have my dark days where I try to hide my frail soul, but I have noticed the more I speak about the darkness, the less hold it really has.