Tag Archives: parenting

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.

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.

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.

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.

Parker watching over Sugar and I in her chair
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.

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:


“for sale:   baby shoes, never worn.”



I’m still broken…..

It’s true. And I’m becoming fearful that it will forever stay this way…..broken.
I know I will never ‘get over’ the loss of my daughter – nor do I want to. But there’s an unspoken feeling that I believe most bereaved parents feel….that we shouldn’t be sad anymore. It’s hard to explain, but as your grief journey reaches a certain point you maybe shouldn’t be bringing it up as often. Or all your tears should be transformed into smiles now. But the truth is, I’m sure I’m not alone, we are all still broken.
This Christmas is the third one without my child in my arms. The first one was a blur and I was numb. But this one hurts just as bad as the last, which feels as empty as the one before. I’m still broken.
Because while I still want to buy my daughter pretty, holiday themed items I’m simply decorating her urn instead. And when I’m strategizing my Christmas shopping for family I don’t know if that lump in my throat will ever leave as I desperately try not to cry in the middle of a store. I’m still broken.
I still crawl into bed, into my husband’s arms, and cry myself to sleep occasionally. He doesn’t ask questions, he knows I’ll speak if I need to. He just holds me with pain in his eyes. He knows I’m still broken.
I still can’t listen to certain songs unless crying is my intention. Look at too many pictures for too long. Remember the details of her last few days. Or think about who she would be or what she would look like if she were still alive. I’m still broken.
As Christmas draws nearer my soul becomes heavier. The tears are that much closer to falling uncontrollably. I walk around on the verge of crying. No one knows, but they’re there. Because I’m still broken.
Today, the 20th, marks too long since my daughter died. 26 months actually. I’ve become one of those mothers. The ones who say their 4 year old is 48 months. Instead of months alive I count the months since I last held her in my arms. Since our last kiss. Last embrace. Last goodbye. And every 20th of every month I remember exactly those things and what I’m missing. I’m still broken.
My heart is not healed. The time has made some days easier, but all together I’m still a bereaved parent. And I’m definitely still broken……