Tag Archives: children

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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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.

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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.

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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.

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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.

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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.

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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.

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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.

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Parker watching over Sugar and I in her chair
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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.

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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:

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“for sale:   baby shoes, never worn.”

 

 

Another Angel

There’s something that all of my fellow special needs parents should be used to…..death. But, trust me, none of us are. I mean, how can anyone be used to death? Does anyone truly become desensitized to the loss of a life? The loss of a child’s life? I know it’s something I will never grow accustomed to.

There’s nothing like the utter despair that fills your heart when you open social media only to see that another child passed away the night before. A child that you ‘followed’. A child you rooted for. A child whose story brought you joyous and sad tears. A child whose pictures brought a smile to your face. A child and family that you ‘knew’, felt connected to – even if never meeting in person.

When Parker was alive these deaths hit like a ton of bricks. Most of us in the ‘cephaly’ community have been told our children have a limited life expectancy – it differs with each child and each situation. So when you read of another child becoming an angel you can’t help but cry – for the loss, the heartache of the family, for your own child. After all, you’ve been told this is your future too, right? Even if it’s not spoken, as a parent who has been told your child will die before you, you grieve. You grieve from that day forward. Not always actively. But the moment another angel earns their wings, you grieve again with the fact that your’s might be next. You can only imagine what the parents are feeling – even though deep inside you’ve tried to prepare yourself. You send condolences and the words flow so easily. You say things you’ve always thought were the ‘best’ things to say. And you mourn the loss and celebrate the child’s life along side the rest of the community.

Parker’s decline was fast, but noticeable, so she was put on hospice and I had the ability to ‘prepare’ myself for what our future held. I say ‘prepare’, because there’s no way to ever prepare yourself to say goodbye to your child for the very last time. It’s truly a gift and a curse at the same time to know your child is dying. I got the luxury of never leaving her side, holding her at all times, singing to her, memorizing every inch of her, take our first (and last) set of family pictures, and overall cherishing every moment I had with her. (Note: not that I didn’t before this, things are just different in an ‘end of life’ situation.) The curse is that it truly is this awful countdown. It’s a ‘hold your breathe every time she holds her’s’ situation. It’s torture to watch your child’s body breakdown – their organs failing. And even harder to have your child unresponsive and just hoping and praying they’re still hearing your words of comfort and peace. And through this all I tried to ‘prepare’ my heart for the inevitable. I even knew the morning of October 20th that it was going to be her last day – knew it deep in my soul. But at 7pm that day, when she took her final breath, there’s was nothing that could have ‘prepared’ my heart for the pain it was to feel. A pain, that still has the ability to physically hurt my chest and make it so hard to breath. An emptiness your soul automatically knows and despises. Nothing can ‘prepare’ you for the loss of your own child.

So these deaths, after losing my own child, still hit me like a ton of bricks – just now I don’t feel like I’m being slapped with reality, I feel like another brick is being laid down upon me, in the pile I’ve accumulated. Now I cry for the reality that the family is facing. Now I cry because Parker gained another friend in Heaven. Because my heart instantly relates to and relives the overwhelming loss the parents are feeling. And now I really, really struggle with the words to say. I’ve come to the conclusion, it’s because there aren’t any. Because no words made me ‘feel better’ after Parker died, there were only the words that stung. And the words that did manage to help weren’t words at all, but hugs, embraces, and tears. If only I could actually send a hug through social media, I would – attached to the simple phrase, ‘I’m sorry’.

These deaths also spark a new feeling in me since losing my own child – apprehension. For the journey the parents are about to face. The journey of grief. The realization that life does have to go on and how they’re going to make that happen. The comforting of the angel’s siblings, if there are any. The ability to grieve in their own healthy way. And the fact that there’s no time limit on their grief. I fear for their hearts the first time a stranger asks them how many children they have and the endless times the words will be lacking when trying to delicately explain their situation. For there is a fine line, a balancing act for bereaved parents. We truly live in two different worlds. One is the past – in our memories, the lives we once had, in all that we had, all that we lost, and all that we thought our futures were to be. The other is now, the present – truly enjoying life the way our child would want us to, keeping our child’s memory alive, and rejoicing in the fact that we will see our children again (where ever we feel that may be).

Every special needs child changes the world – I truly feel this way. They have the ability to live and love with a pure, nonjudgmental heart. To see only the good in every person and situation. To be happy and bright no matter the challenges they face each day. To be the student and the teacher every day.

Below are some children who left us too soon. They continue to change the hearts of others, to change the world even as angels. Some joined the angels before Parker and some after, but all of them (and their parents) hold a special place in my heart.

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