Tag Archives: making a difference

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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