Waves sometimes hit hard

  

Ebb and flow…
I’m trying…
deep longing…
deepest love….
ugh, grief, I’ve come to the conclusion that I’ll never understand your ways. Truly never understand because I’ve realized I’m not meant to. I realized in the beginning that I must ride your waves, go with the flow. And through this time it’s allowed me to not be ‘stuck’ with you. My waves are no longer as frequent. But as the time as grow in between each hit I’ve noticed each wave has grown in force. My lows can be heart shattering.
The last 24 hours for example. My mix of emotions in regards to ‘back to school’ day led to a full blown meltdown as I went to bed. Sometimes the most selfish of realizations come over me, I’ll never have the chance to post a picture, to send my kid, any kid, to school for the first time, make stupid teacher gifts, yada yada yada. As I tried to get over myself and fall asleep Parker’s blanket of her clothes glowed in the dark. Literally. It glowed, her skeleton shirt, and I payed there and tried to imagine her in it and it wouldn’t come to me. I lost a memory. How dare I? Her mother not remember every single thing about her, but it was gone and my heart broke. And then all I could think about was how many more memories will fade…which of course had me up most of the night.
Fast forward to this morning and I received an amazing email. A testimony of my effect on a family through TPLP with the sweetest p.s…..they added another family member in the last 10 months and named him Parker. Oh, my heart.
  

Then….then a lovely mom and grandmom came to donate supplies. After we unloaded they decided to get the children out of the car. My heart beamed and sank at the exact same moment. Here was this beautiful, chunky, almost two year old with crazy curls flowing everywhere. I immediately said, 

Oh, she looks just like my Parker! 

To which the mom agreed. I begged to hold her. Thought it would feel good. And it did, too good. She felt just like my Parker. My arms were full again! I fought back the tears like a champ until this little one made the sweetest, most familiar noises – noises I hadn’t heard since before Parker got her trach – when she had just turned 2. My heart crumbled, slowly lost piece by piece. I could fill my eyes fill up and I mentally tried to collect each piece before I lost it right there in front of these people. We quickly talked technical, diagnosis, procedures, seizures, medications. My comfort zone, my clinical side where I can detach and not cry like a crazy person. I think the grandma could tell I was desperate in holding it together and they excused themselves. 
It’s days like these, moments that come crushing down on me, and wise words from family and friends that remind me why I do The Parker Lee Project. And though some believe this mini P visited today because Parker thought I needed it, I’m not so sure. It was so incredibly painful that it’s hard for me to believe that, but maybe….

My ebb and flow. The testimony and all the comments that followed my sharing of the testimony make me think I’m stronger than I feel sometimes. And my heartbreak with this sweet mini P remind me I’m doing it for her, for all these kids. Parker was brought into my life for reason. And if I had to lose her, lose such a giant piece of my heart and soul, at least something good was to come out of it. I found my calling, my purpose, beyond being Parker’s mom. I’m meant to help these families, whether through support, through these crazy blogs/posts, through helping them sleep peaceful knowing their child has the medical supplies and equipment they need. 
   

   

IMG_3491

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. 

IMG_1482

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. 

IMG_6601-0

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 (theparkerleeproject.org) 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. 

A Great Opportunity

I’m excited! The Parker Lee Project has been chosen as a finalist to win some awesome signs that could really help us out. As most of you know we try to use all funds/donations that come in directly towards helping the families receive the medical supplies and equipment they need. We have and will continue to do vendor type events where people that have children with medical needs can learn more about us and what we can do to assist them. We could use both prizes for just this! The table top banner could be used in so many ways and the 10′ backwall sign is what TPLP needs to look as professional as we already are. We would never be able to afford something like this on our own, so I’m asking you, our friends, to vote for us. It’s simple and you can vote every 24 hours,  just follow this link https://nationaltradeshowdisplays.com/charity-trade-show-challenge-voting. Or visit their website page https://nationaltradeshowdisplays.com/. Thank you all in advance!

‘Newbie’

This graced my timeline this evening:

Happy 5 years of friendship! Today, five years ago, two scared-shitless, clueless mommas with infant girls first reached out to each other for comfort and support. 5 years later I cannot imagine life without one of my dearest friends. I love you, I love Parker, thank you being a part of my life and holding me up for the past 5 years. Xoxoxo

I immediately cried thinking back to the girl I was five years ago. I was scared-shitless. I was beyond clueless. But I was desperately trying to change both of those things and a support system of other parents is exactly what I needed and found. I found moms who knew what it was like, the panic, the fear, the unknown. 

  
Five years ago I became the ‘newbie’ of a special group of parents. A support group full of other moms like me with kids like Parker. Five years ago today was the first time since Parker was born that I didn’t feel alone, like I was fighting a war with an army of just one – me. Five years ago was the first time that all the hope I had in my heart was visible. All these families, these children – living, loving, thriving beyond what all the doctors kept saying. Five years ago I found me – Parker’s mom, a warrior, my daughter’s advocate and nurse, and a supporter of other parents like myself. 

  
 I was lucky enough to find a mom who was on the same path and timeline as I was. We had an instant connection. An instant bond even thousands of miles away from each other. We have been through it all. Deeply sad moments of watching other parents bury their child, but being there to comfort each other. Pride in moments of the smallest milestone being met. Frustration of dealing with DMEs, nurses, agencies, doctors, hospitals, therapists. Breathtaking moments of sharing our children’s smiles. Happiest of moments while watching our children thrive and be happy. To the gut wrenching, heartbreaking moment one of our children outlived the other. Through all of this I’ve made a lifetime friend, a sister soulmate. The love I have for her, her daughter. And her family is indescribable. 

  
This is not an uncommon bond to form when you go through the special needs life. I’ve forged many a friendship throughout these five years. Some have dwindled while others have flourished. And some I’ve loved from afar. 

One of these families had a tragic loss on Sunday. This mom suddenly found herself as a ‘newbie’ to a new group, bereaved parents. A group I also know too well, one none of us thought we’d be in nor ever wanted to be. I say tragic loss because, to me, it seemed just that. On Saturday night there was posts of her daughter’s beautiful smile stating she had been so happy all day only to open social media again on Sunday to see she joined the angels that morning. Yes, she was ‘sick’, but all our children are technically ‘sick’. With Parker I had warning, time to really say goodbye, to soak in every moment as they counted down. I can’t say which way is worse, they both suck because the outcome is still the same, but I’ve only experienced one way so I can’t imagine the other kind. I broke down immediately upon reading this. Like can’t breath or make words kind of break down. My heart instantly broke…..for the family she left behind – her parents who now have to know the deep, brutal pain of losing your child, her twin sister who now has to deal with this and is only 6, her grandparents and other loved ones. I know Parker greeted her with open arms, they danced, played, sang, enjoyed life like they should’ve here on earth. I know she’s in great hands until she’s reunited with her family. But my heart still broke for all the anguish and heavy hearts here on earth. I wouldn’t wish the pain that comes with losing a child upon my worst enemy. I know this mommy is strong and she will continue to share her daughter with the world. But from one broken mommy heart to another I will pray for comfort. 

  Fly high sweet Abby. You are dearly missed. 

IMG_0210-0

The weekend my heart needed

Mother’s Day is an extremely hard day for me.  Probably one of the hardest. You see, for me, Mother’s Day will always suck. I know all the other holidays can/could be happy ones again. I will always miss my daughter on these holidays, as I do every day, but Mother’s Day – Mother’s Day is the very evident, painful reminder of what I will always miss and yearn for…to be a mom, Parker’s mom. I know I’m still her mom, but in a physical way. I now have to hold my only child in my heart, no longer my arms and Mother’s Day reminds me of just that.   This Mother’s Day my husband gave me the best gift. A plane ticket to finally go see the women that have been my biggest support system for almost 5 years now. My special needs community. The mothers I admire and the children I adore. In the very beginning of my special needs journey I met a woman, Kate, who’s daughter, Anabelle, was only a month and a half older than my Parker. They not only shared a diagnosis, but the same looks as well. Well at the end of May Anabelle’s family was celebrating her 5th birthday by hosting a fundraising event for the organization they started, Anabelle’s Wish. Anabelle’s Wish helps the families of children with Lissencephaly, like Parker and Anabelle. They even so kindly and generously helped our family during Parker’s last weeks here on earth. 

 
My husband, Phillip, has always known that I would love to go to this birthday/fundraising event each year as it comes around. So that’s exactly what he got me for Mother’s Day – the opportunity to finally attend. We both knew if I were to miss this event and something were to happen that I would always regret it. I know I would, just as Kate has said she regrets that she never got to love on Parker while she was alive. 

The anxiety leading up to this getaway was unreal. Not just the fact that I’m socially awkward, but also that I was unsure of exactly how my heart would feel. As I packed my bag the night before I left I was embodied with grief. I was angry and sad that Parker wasn’t here to go with me. These were her friends I was to meet. These were families she introduced me to. I would never know these women, this support system, if it weren’t for her. I never knew this world, the special needs world, existed before I had her. She should be here with blond curls, infectious smile, and adorable cheeks for people to fawn over. I shouldn’t have to attend this as an angel mom and I was mad about that. I was angry that this was my reality. 

  
Finally, the day I was waiting for arrived. I drove myself to the airport, nervously boarded, flew to Minneapolis, changed planes, flew further, wrote a blog, then landed at my destination- Philadelphia. Two of my SN friends, Kathy and Brandee, were waiting for me and my Texas accent. Brandee drove all the way from Ontario with her special needs son Keegan. 3 months ago she lost her other special needs son, MJ. She’s been around the block and time or two with the ins and outs of the SN world and could teach us all a thing or two. Kathy drove from Boston. I had meet Kathy two other times, but they were both during a fundraising event in Austin, TX celebrating our friend Malia and we had never really got to sit down and connect more deeply. Kathy lost her daughter, Lindsay, almost a year ago. Lindsay was 31 and also had Lissencephaly. Lindsay is an inspiration to all parents and Kathy is a veteran, guide, and blue-print for what we all want to be as parents. As soon as I walked to the car all my fears were not just brushed to the side, but shoved and buried. 

We drove directly to the place we were to meet all the moms for dinner, we wanted to get a head start with a beer. Soon enough we were met by the other 3 women – Anabelle’s mom, Kate, Tricia, and Theresa. The laughs were immediate. So were the drinks. It automatically felt natural, like I was home, around friends I had known my entire life. I had the best time relating and laughing with such great women. Kathy and I then stayed up talking once we got back to the hotel (we were rooming together). It was pleasant and so refreshing. We understood each other, our children, our losses without having to explain much. 

 
On Friday, Kathy and I found as much trouble as we could. Kidding. We walked Penn’s Landing and stumbled across Philadelphia’s Magic Garden – a beautiful mosaic building. We then went back to get ready for the big event. The butterflies kicked in, the anxiety started to brew, I was now to meet these children I had fell in love with time and time again through social media.   

 
I was fine walking in until I saw Anabelle. I still can’t pin point exactly what brought it on, but I cried. I think my heart and soul were just overwhelmed. I was so happy to see her again (I got to meet her in the summer of 2013 for about 30 minutes once), feel her, love on her. And I was also sad that she wasn’t Parker. (I don’t know how to explain this, it’s just what I was feeling.) But definitely happy to be there. I got myself together and enjoyed the party and the company of so many women/mothers of children like Parker. I got to love on more kids that I have been following online. And then I held, Char, the cutest redhead you’ll ever see who also has Lissencephaly like Parker. And then the tears were flowing. Once again, didn’t expect it but it happened. I think it’s because my empty arms and heart were suddenly full and it felt amazing. Her weight in my arms, her angelic face reminded me most of what I loved during my journey with Parker. That peace and settling of fears a child like this instantly brings you. 

    

        

 The moment came where my heart broke and kinda healed at the same time. Even thinking about it now brings me to tears. It was a moment/feeling I’ll never forget. I held Anabelle and for just a brief moment I closed my eyes and it was Parker. It was the most surreal feeling. I know I looked a fool/mess bawling and holding this sweet, sleeping girl, but honestly, the rest of the room had faded away. It was just me, Anabelle, and Parker – I know Parker’s spirit was there too. I felt it. I felt it stronger than I have in a long time. My heart broke as it fully embraced that this is what I want, what I long for, more time with my daughter. That no one can ever fill the void, but this little soul helped some. Just having her head against my chest, her soft curls graze my chin and neck, the feeling of peace across her face. I ached for what I once had, what I lost, wanted I want most in life. But at the same time some cracks in my heart started to heal. She gave me a comfort I hadn’t felt in a while – a crack was healed. Having these women around me, understand my pain, and not judge me – a crack was healed. This was something my heart needed. It was emotional, but it was needed.   

I woke up early with a smile across my face. Though I hated to leave Philly and wish I had more time, I was happy. I did the same routine of flying, changing planes, flying again. When I landed I went straight to my parent’s house to hang out with them and my grandma and to get ready to watch my youngest stepson graduate high school. Not sure where that time has gone, but nonetheless. My heart beamed with joy to watch him walk across that stage and begin life’s new journey. He’s a good kid (most of the time) with a heart the size of Texas. He has tons of potential and I’m excited to see what he’ll do next.     

Sunday morning, after little sleep (thanks to us needing to get our racing fix) we celebrated the graduation of our friend’s son and then drove to Dallas to meet some more mommy friends. Kim, my SN bestie and mom to William (Parker’s boyfriend), also drove to Dallas with her MIL and both Williams in tow. We were finally getting to meet Keri. Keri was in town with her daughter, Karina, for a TKD competition. Keri’s son, Cameron, is a cutie who has inspired lots of parents to continue to seek new answers and solutions with their children’s health. Keri was tons of fun and I’m happy we got those couple of hours to get to know each other in a real-life setting. Needless to say, you couldn’t wipe the grin off of my face on our way home Sunday. My heart was full. 

  

My heart needed this weekend even more than my head knew. The joy of meeting these families, seeing the joy and love that these kids exude. My heart needed that. To hold, kiss, and love on these children. My heart needed that. To share hugs, stories, and laughs with these parents. My heart needed that. To put faces to names that I’ve connected with throughout the years. My heart needed that. To not feel like I was wearing a stamp on my forehead saying ‘angel mom’. My heart needed that. To have a husband who knows me so well and who’s heart is full when mine is. My heart needed that. To have so many people approach me to tell me they love what I’m doing with The Parker Lee Project. My heart needed that. To see how I’m helping the lives of others, even just a little. My heart needed that.   

Thank you, Phillip, for this opportunity and gift. Thank you, Anabelle’s Wish, for putting on a fabulous event raising money for your wonderful organization. Thank you, Kate, for allowing me to love and cry on your prized possession, for being the best support system, and kick ass mom. Thank you, Kathy, for being the best bunk mate, driver, admirable friend – I laughed so much my cheeks still hurt. Thank you, Brandee, for the donation of supplies, generous gift, for bringing Keegan, and for putting up with Kathy and I on Thursday.  Thank you, Tricia, for letting me love on Char, meet sweet Jude and Claire, and reminding me to always check if the mic is on. Ha. Thank you, Theresa, for the awesome conversation and laughs Thursday night. We missed you Friday. Thank you, Danielle, Robyn, Liz, Revell, and Vicki, for introducing me to your adorable children. All of whom have deeply touched my heart. Thank you, Keri and Kim, for lunch on Sunday – what fun! It was great to meet Karina and I always love getting my William fix. And thank you to all those who let me know just how much you love The Parker Lee Project and how we’re helping others. It means a lot. 

 

The start of it all….

I want to start journaling my entire story. So here it goes. A piece at a time… 
I’ll start from the very beginning…..my world came to a halt when I learned I was unexpectedly pregnant – not in a good or bad way, but a halt nonetheless. I quickly grew accustomed to the fact I was to be a mom and I thought of all the things expectant mothers do….preschool, she would be a ballerina or a poet, the cutest outfit to bring her home in, all the fun things we would do. 
About 20 or so weeks I had a sonogram (gestational diabetes had me getting them every two weeks) and the dr noticed her body had grown but her head had not. Strange. No big deal. He said it would catch up. Every sonogram that followed showed the same thing. Her head had still not grown past 20+ weeks but her body was on track. Something felt ‘wrong’. I finally begged my dr to look further into this and she sent me to a high risk OBGYN. It was an intense appointment. With my mom by my side the dr did the sonogram himself for over an hour. I laid there. It was quiet. It was cold. Then the earth stopped spinning. He so softly let me know that Parker’s head was small because her brain had stopped developing. He sent me for a fetal MRI to get a full idea. I had 3 weeks left in my pregnancy. It took a week to get back the results. It confirmed something was ‘wrong’. They didn’t tell me a diagnosis but on my check/out sheet were the words ‘Microcephaly with slanted forehead’. My mom and I cried in the elevator on our way to meet with the NICU dr. 
The NICU dr warned of many things. Basically anything you can think of including death. But they were all certain she would go straight there following birth. I remember there were babies in the room screaming. He saw the concern on my face and told us they were babies born to heroin and were awaiting their methadone. I was pissed. I was trying to keep my baby away from this place while there were moms knowingly putting their children there. He never spoke of a diagnosis but I remember him saying the phrase ‘smooth brain’. I googled it as soon as I got home. I was devastated. Google, of course, is a horrible idea and only tells of the most horrible cases. Either way, I felt alone. Isolated. Scared beyond belief. There were 2 weeks until I held my daughter. 
The time flew by and at exactly 39 weeks my regular dr and high risk specialist decided I needed a c-section. Parker’s head was too small to make way for her body during a vaginal delivery. I was a nervous wreck. And they prepared me for the worst. 
I remember them holding her over the sheet to show me. I remember thinking ‘she has no head’. She didn’t. It was so tiny. They immediately whisked her away. To NICU. To testing. She had her first MRI when she was an hour old. They finally let me see her that afternoon. 
She was beautiful! Beyond anything I imagined. She was perfection! I, for the first time in my life, held an angel. I didn’t know what our future held and, in that moment, I didn’t care. 
  
When she was 2 days old the doctor walked in the room to tell me the news. Her diagnosis. Lissencephaly. Smooth brain. All he did was speak of what she wouldn’t do. Couldn’t do. And gave her essentially no time to live. He spoke of how horrible her life would be. He didn’t know when or if she would ever leave the hospital (btw we were discharged together on day 5). He wanted me to sign a DNR right then. I politely refused – it didn’t feel right. I knew she had more fight in her than that but I was still in shock. I cried. Bawled actually. A deep, gut wrenching sob. Primitive honestly. I was weeping for all my plans for my daughter, for me as a mom, for us as a team. I was weeping for the what could’ve been’s, what should’ve been’s. It was the day I started mourning my daughter. That might sound weird to some, but you can ask any parent who’s given a diagnosis with a short life span….you grieve. You grieve what was, what is, and what should be. 
  
My faith was shaken. I questioned everything about myself, about God, about life. I was angry. But mostly I was lost. The doctor told me how rare Lissencephaly is and I thought I was alone. I cried all the time, but only when Parker was sleeping. I refused to let her know I felt defeated, sad, terrified. 
I definitely did the whole ‘fake it ’til you make it’ thing for the first few months. I put on a brave face hoping it would become real sooner than later. I pretended to know what I was doing and Google did help with some of that. But I was still lost. And every time I felt I was finally adjusting something would change. A NG tube was added at 2 weeks, seizures started at 3. I was constantly trying to adjust. 
I can’t tell you the defining moment, but one day it was all ok. I was ready to face anything and everything. Looking into my daughter’s eyes gave me a reason to fight for her, for me, for us. I was ready to kick some ass to make sure my daughter had the best life possible. Every day started with a smile. There were still plenty of tears and some woe-is-me moments, but for the most part life was great because God gave me Parker. I no longer felt the need to question Him or question why. It just was and she was perfect to me. My life would change day to day, in the best ways possible, because of a little girl named Parker.