Tag Archives: special needs

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. 

 

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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