Category Archives: Bereaved Parent

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. 

Advertisements

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 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. 

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. 

 

I’m still a mother….

As I sit here thinking and dreading and debating if I can sleep right through this Mother’s Day I wonder if last year was this hard. Was the one before that? This is my third year celebrating (or surviving) Mother’s Day while no longer having my child in my arms. This year is hard – feels to be the hardest one yet, though it seems unlikely. My first one had to be harder, it just had to be. 

Mother’s Day has been one of my hardest holidays since losing my daughter. I’m guessing it’s because she was my only child. I will never have anyone to call me mom. Ever. Sure, I’m a stepmom and I hope one day to be an aunt and grandma, but I will never again be mom to anyone. A heartbreaking reality for me. 

Like most women, the greatest day of my life was meeting my child for the first time….becoming a mom. She was and will always be my greatest accomplishment. And this Mother’s Day, any Mother’s Day, reminds me of exactly what I’m missing and longing for…..my child. It’s not that there’s ever day – or moment really – where she’s not on my mind, but Mother’s Day is a painful reminder that even though I’m a mother it sure as hell doesn’t always feel like it. I have to remind myself – I’m still a mother. It’s extremely difficult being a mom to a child you can no longer touch, hold, kiss, make new memories with. And I would give anything to have Parker still here. 

  

  
So tomorrow, on Mother’s Day (on each Mother’s Day and every day in between), honor every woman. Post adorable pictures. State your love for your mother and for the little ones who gave you the honored title. And please say a special prayer for us ladies with broken hearts on this day – for those who have lost their mother, have lost their child, have miscarried, or who still long to be a mother. 

  
Happy Mother’s Day to all the different kind of moms. And sending kisses to Heaven – to my daughter and every child and mother who join her. I miss you, Parker, beyond words, but love you even more. 

  

Shattered

The house is pretty much completely packed and empty now. The movers came last Friday. It’s been a week of adjusting, going between two houses, and finding the time to settle into our new home. I’m excited, truly, but I’m also sad. 

Parker and I moving to the new house. 

I’ve found myself feeling completely shattered this week. My heart is in a million pieces, some too small to gather. I know they’re too small because I’ve tried. I’ve tried all week to unpack the pieces and put them into theyre new places. I’ve tried to place some of the pieces into storage bins. I’ve even mailed a few pieces (that will always be attached to Parker’s belongings) to new homes this week. And there’s pieces that I know will never leave our old house – no matter how hard I try. The tears have been present all week – at all times. I’ve broken down even when trying to keep them at bay. I’ve cried more this week than I have in months. 

The silence has become my enemy. I’m scared to turn the tv off at night because that’s when I can no longer breathe, when my chest starts to hurt, when the pain becomes sobs. The music cannot be loud enough when driving in the car. When I don’t know the words to the song that’s on, my mind immediately drifts off to Parker and the tears are right behind. 

The move is good, what we need. But the new house has three rooms, not four. The new house is just an example of the finality of all of this. A reminder that Parker is no longer here – there’s no longer a need to have a room for her. I know I’ll get used to it but I think it’s going to take longer than I originally thought. But this finality of this move also has me feeling angry, the natural, grief-makes-no-sense kind of angry. And I not fine with the angry part of grief. Though it’s natural, I feel it’s the selfish part of grief. The anger comes from what I want, how my life has been effected, what I’ve lost, what I’ve suffered, what I wish life was now – and those are selfish things. Parker was given to me for a reason. He took her back for a reason. Her life was not lived in vain, I will make sure of that. I also have to trust in that, in His reasons. 

Today I left more of my shattered heart all over Parker’s old room. I opened so bags that I haven’t opened in a long time, almost 2 1/2 years actually. Today I found the stuff from Parker’s funeral. Fresh tears landed on cards of condolences – right along side old tear stains from the first time I read them. Then there was a few envelopes, in a plastic bag, that I didn’t remember, with her name typed on the outside. I opened it and found something I never thought I’d see again – my daughter’s hair. A locket, one perfect curl, sealed in a tiny ziplock. I had too many emotions to count. I found myself, once again, on my knees – saying ‘no, no, no’. I pleaded – with what, I don’t know – but I remember that same plea, that same voice, that same emptiness that came moments after Parker took her last breath. The hair was accompanied by her foot print. I honestly don’t remember her feet being so small. But how can I forget that? How have I let myself forget anything about her? 



I then found a copy of her funeral – that the officiant apparently had typed out and given to me. Reading over it, I’m not sure if I was present that day – mentally. The words I read – that he spoke that day – seemed foreign to me. I felt I just went through the motions that day, but it must have been worse than I thought. I remember I didn’t cry. I couldn’t. I think I had disconnected myself so much – for my own sanity. I found the words that I wrote, but couldn’t speak that day. Someone read it for us. I’m not even sure who. Our thank you for the support, for loving our daughter, for coming to celebrate her life. Celebrate the life that i cherished more than my own. 



So please understand that today I’m mad. Today I’m hurt. Today I’m broken And shattered. Tomorrow is new. Tomorrow will be different. Tomorrow I will wake up and hopefully remember my purpose, my desire to keep her legacy alive. Tomorrow I will sew my shattered heart back together, patch it as best I can. Tomorrow is a new day. But today I’m shattered. 



The Great Balancing Act

As a special needs parent you face many obstacles, one of which is just trying to navigate your way through this world. To give your child the very best life they can have. And there’s really two worlds we exist in – your family, friends, and life that was before your child’s diagnosis and the special needs community you find afterward. Because once you have a special needs child it’s a battle of dealing with a whole new way of life. A new journey that leaves you not knowing exactly where you fit in. Trying to balance these two different worlds.

flams group in yellow
My friends that have been there since I was 13-14 years old (and all of our children). Taken about a month before Parker gained her wings

Once you have a special needs child you feel isolated from the life you had before, especially if you’re a first time mom. You feel no one truly understands your situation- and quite frankly, they don’t. Just as you wouldn’t have understood until you were made to. It’s learning to juggle a new language that most don’t understand. You speak in acronyms that you never knew existed like DME (durable medical equipment- your supply provider) or LMN (letter of medical necessity) or even PRN/BID and so on for medications. You juggle specialists that you never thought you’d have to take your child to. And you might even have to figure out how to live life with a stranger in your home (your child’s nurse). Learn how to balance your mothering against their job and duties. And do you think the people from your old life grasp the frustration when you’re complaining about the nurse using the last of something and then not telling you? No. They might listen, but they don’t understand. And they probably laugh when you tell them you had to fire a nurse over a pulse ox probe. Seriously, a pulse ox probe. I even chuckle about it now, but at the time it was a serious offense that left us without one for days – not being able to know her oxygen saturation or heart rate. Big deals in our world. Your old life doesn’t understand that you might not make it to a lot of functions or that you might have to cancel last minute because your child had too many seizures for your comfort that morning. It doesn’t mean you don’t want to be there. Your priorities have shifted and you’re not just a mom who can hire a babysitter. You’re also a nurse, an advocate, your child’s lifeline. You’ve become the recognized voice to the after hours operator for your child’s doctor. A regular face at your local children’s hospital. You’ve pretty much have become a whole new person still trying to stay connected to a world that supports and loves you but doesn’t understand. And you will always need these people, your old life. They will be crucial to your sanity at some point in your journey. They’re not replaceable, disposable, though they might feel like it at some times (and you’ll feel you’re replaceable for them too), it takes effort –  lots of it at certain points – effort and understanding from both sides. Like I said, they don’t understand but there are some who are learning and trying and loving you the entire time.

william and scotty at funeral
Parker’s friends, William and Scotty, at Parker’s funeral

And then there’s the world that does understand….that have children just like your’s. That have been through the same challenges. They, too, have had to remind themselves to breath as their child is being taken into yet another surgery. They, too, have stayed up too many nights watching their child while they sleep, afraid of what the future holds. But where do you fit in there? The newbies? The veterans who know way more than you? The parent that researches too much and over thinks things? The parent that is naive in their lack of researching and learning – ignorance is bliss to some? Parents are all different and still manage to understand and help each other. There’s parents that have been around the block more times than you can count. They’re like your Yoda. They’ve been through it all but they also see the reality now. The reality of what the future truly holds. The reality that you, as a new special needs parent, sometimes refuse to see. They still hold on to hope, just like you’re doing, but they’ve seen it all. They’ve released too many balloons for their friend’s children who have left too soon. They’ve watched everyone of their friend’s fight a huge fight at some point. Some kids recover and some do not and they’ve watched it all. They’ve prayed for days on end for children they only know through pictures. They’ve answered a million questions- sometimes the same one over and over. When you’re new to this group you still don’t feel like you fit in. You’re new. Inexperienced. Looking for hope and answers. You finally find your way. Find those parents that you connect with. And you fall in love with children you’ll never get to meet, but it’s a world that understands. A completely different world than what you’re used to, but they understand your frustrations, your fears, and your dreams. They truly get it.

And then, one day, the unimaginable happens. Your child dies. And you’re stuck. Completely stuck between two worlds. Hovering in this space of unknown – where few have been. Where trying to navigate is just as hard as having to be there in the first place. You feel like you’re no longer a mother. You can now go out and do things with your old life, but sometimes it’s still hard and they still don’t understand. You feel like you’re no longer a special needs mother. Like you have no more input or answers to the questions your support group asks and now they don’t understand. You almost feel like you’re no longer a valuable asset to either life. You’re just there. You’re an example of the reality that none of the parents what to see. You become highly vulnerable to all situations. And awkward. Your new friends don’t know of your life as a special needs mom. Your struggles, your pain. And any new special needs mom friends are curious of your struggles, your loss, and how it became that way. It’s a great balancing act that isn’t easy or pretty.

nursing and me
Me, Parker, and Parker’s nurse in Parker’s room

Such changes…..

Where do I even begin. My emotions and grief have been running rampant lately.

1311
Parker (3 days old) & Mommy

Today is a big marker. A weird one to most probably, but it’s one I’ve been dreading for years. Today means Parker has been gone the same amount of days as she was here. Meaning tomorrow she will have been dead longer than she was alive. To say this messes with my mind is an understatement. My sense of time has become very distorted since either she was born or she passed – I can’t even truly remember which life changing event warped it.  I do know that it felt like I had Parker in my arms for so long. In a good way. In the best way possible.  Maybe it’s because I knew she could leave at any time, maybe it’s because I truly enjoyed every single day with her (even the ridiculously hard ones), or maybe it’s both. I’m not sure. But those 2 years and almost 4 months felt like eternity. And, now, saying she’s been gone for that long blows my mind. It seems unreal. It wasn’t yesterday? It wasn’t a year ago? The time has flown by. And with today marking what it does it makes my heart and mind work extra hard to comprehend that those two feelings, two time lines are actually one in the same. This day has been etched into my brain for a long time. And as its drawn near I think it’s brought on a whole new level of grief. My heart feels like it’s so fresh, like I just lost her. I’m such a mess lately and all the big changes happening aren’t soothing my soul any.

IMG_0899
Parker in her Kid Walk

Last week a therapist contacted me (through The Parker Lee Project) about a local boy needing a gait trainer. The boy’s therapist explained the size they were needing and I knew we could help.  Parker had one. A Kid Walk. She loved and hated it. She would usually be ok just hanging out in it, but shortly after someone tried to make her work in it, it was over. Pouting, yelling at you, and sometimes even some tears. I knew after 2 years of it sitting there mixed with TPLP’s other equipment that I finally found the home it would now belong to. I was happy about that, yet the tears flowed anyway. I had given other things of Parker’s away in the past, but this seemed to bother me. But I packed it up, delivered it, and then cried. Cried hard. It was expected some, but I wailed, sobbed, screamed. And then…like magic…..I was pretty good.

IMG_1625
Parker in her Big Joe chair

While dropping off the gait trainer I was speaking with the therapist and the boy’s father – the boy needed a seating arrangement. Something. Anything. Besides constantly laying.  Before I could stop the words from leaving my mouth like vomit I offered up Parker’s Big Joe chair. This chair was a big part of her life. She sat or laid in it at least once everyday since we bought it. She loved it. We could always make it contour to what position she needed. I would even sit in it and hold her. (Which might explain why it needs beans added to it to make it full again.) I was almost mad at myself after offering it. Only because I wanted it. But for what? It’s been in a room that’s pretty much been closed off for over 2 years. I’m glad my heart didn’t get in the way of my head giving away her chair. The boy NEEDED it. Truly. And I NEEDED to give it to him – whether I knew it then or not.

The next morning when I woke I was already sad – I needed to say goodbye to a piece of my child. I took it out of her room and placed it on the floor of the living room as I gathered up all the other items I needed for the day. As soon as it hit the ground Sugar/Boogie/Boog/Sug Nite/Asshole, our cat (and a few of her names), immediately went to it and looked for her baby, her Parker. Sugar never wanted much to do with Parker while she was alive, but she always watched over her. She laid in her room (even with the nurses – she typically hates most people) so she could watch the going ons and I can’t even watch videos of Parker without Sugar looking for her in my phone and in my lap. So when I saw her looking for Parker I went and sat in Parker’s chair. Sugar immediately jumped in my lap and laid down. I cried. I know Sugar felt my sadness. I could feel her’s. I knew she missed her baby as much as I did. We sat for a while. It was nice.

IMG_7284
Parker watching over Sugar and I in her chair
IMG_7286
Tristan in his new chair from Parker

When I delivered the chair and I know I was awkward because I was never going to see it again. I was like a child having to share my favorite toy – I wanted to keep my hand on it.  I wanted the family to know how special it was – I think they knew without me having to say it and that helped a ton. This time when I left I felt somewhat satisfied. And the picture I received later that night of him in it made my soul know that it was the right thing, the best thing. Please, don’t get me wrong, I’m more than happy that another child gets to use and benefit from these things of Parker’s, this is just the journal of grief that comes along with giving them away.

Last week’s adventures made me realize that, though I’m not ‘ready’, I can handle the one thing I’ve been dreaded for so long – packing up Parker’s room. We rent our house so we’ve always been aware that one day we might have to move. We did initially think about purchasing our current home, but after long, hard talks and using logic (not grief) we decided it’s not the best choice for us. So, with that being said, we’re moving.

The anxiety and pain that came with even the thought of going through Parker’s room has now become my reality. I started yesterday. Giving myself weeks to fully accomplish the task. Because as soon as I walked into her room yesterday to get started I felt paralyzed. Paralyzed with grief, with pain, with what was, with what could have been. How could I seriously package up my daughter’s entire life? IMG_7331 Her therapy toys, her cute outfits, her embroidered towel, her favorite stuffed animals? It’s not that some of it wont be used in our new house or my office, but her clothes won’t. Her drawer full of hair accessories won’t be used by me or her again. Her lotion bottle, her comb, her shoes, her Halloween costume she never got to wear.  It just feels so FINAL. So real and apparent that none of these things are needed anymore. The girl who used them, who needed them is gone. She’s been gone. For over 2 years now. And I can’t keep it all. I know I can’t. That would be unhealthy, just like getting rid of it all. So I’ll use the next few weeks to try and find the happy medium. And also use the weeks to try and not feel like we’re leaving her behind. Or leaving a piece of our lives behind. Because as much as it was/is Parker’s room, it was our’s too. We lived in here too…with her – therapies, long nights, long days, play time, cuddle time. I literally slept in her bed, by her side, every day for the last few weeks of her life. And taken plenty of naps with her there. I’ve cried in that same bed, longing for her, since she passed – too many times to count. My mind knows that she’s such a vital, beautiful part of my life and who I am now that she could never really be left behind, but my heart feels different.

IMG_7332
Med list from 8/12

Yesterday as I went through the papers left behind, nurse’s notes, daily planners, Med sheets, nursing guidelines I found Parker’s vitals for her last day alive. A full sheet depicting her respiration count, heart rate, oxygen saturation.  Seeing that rapid decline in her numbers that day was like reliving it all over again. Seeing notes that her face and extremities were cyanotic sucked. Remembering that she hadn’t urinated in days (complete renal failure), hadn’t had a bm in over a week (couldn’t process food and was third spacing due to organs shutting down), and that she was completely unresponsive even to stimuli made my heart break all over. I told her that day that I was ‘ready for her to go when she was’. I assured her that it was going to be ok. Phillip promised her that he would take care of me. And I was ready that day. She was so tired. She was hurting. She was done fighting. I was strong for her that day and I needed to remember that – I need to be strong like that again as I get through these steps.

I’m hoping and praying that this time in my life, my grief, my journey will prove to be therapeutic, because I do refuse to sink. So I’ll take this time to apologize, in advance, for the outpouring of memories and tears that will fill this blog as I go through her stuff. I know putting it here is my therapy and I know if I summarize each day I do this I can get through this being stronger than I am now.

Ernest Hemingway once won a bet by crafting a six-word short story that can make people cry.  Here it is:

IMG_7333

“for sale:   baby shoes, never worn.”