I’ve been silent recently. Quiet. Absent.
There’s so much going on and also so little going on. I feel like I should be able to handle everything. I feel like I have no reason to be struggling at times. Then I realize I have every reason and it’s ok.
Our daughter is struggling. If you’ve read our full story you know about our oldest daughter, Caroline. She was 2.5 years old when April died. I naively thought she’d not understand much and that this would all be easier on her. I was wrong. So very wrong.
Caroline is really special. We’ve always known that. She’s just been ahead of the curve on everything she does, and she’s got an extra special quality of being able to notice every single detail, every single emotion, and just is a very good observer.
We’ve come to learn that she’s considered to be what’s called a Highly Sensitive Child. This is more than just being “sensitive” in the way our society views the term. This is actually a trait that’s been identified. If you’d like to read more about it, you can find a full breakdown of what this means for our daughter and others at this post that I wrote on the topic –> The Highly Sensitive Child.
Basically it means she takes EVERYTHING in. She notices way more than most, and has an ability to really understand it and empathize. She ends up on sensory overload from her surroundings, the people around her, her own emotions, etc.
At 2.5 she understood death far more than I realized she would. She asked questions that were beyond what I thought she’d be capable of. We had conversations about chromosomes- at 2.5.
At 2.5 she also was super emotional. She is aware of her emotions, and not just the basic ones- all of them. She could put words to it at that age. The flip side is that she also was 2.5 and the depth of her observation, intake, and understanding surpassed her ability to control, deal with, and solve the issues she was facing. And so, meltdowns happened. BIG HUGE screaming fits. 2 hour long fits. Every day. Sometimes longer.
At 5 this has changed a bit, but the concept of intake and understanding still far surpass the emotional capabilities that she has as a 5 year old. The fits, while different, still happen.
It’s rough. We suspect a lot of this has to do with her grief. She talks about April dying often. Daily.
About nine months ago we found a therapy group that specializes in highly sensitive children. It was the perfect fit for her. We’ve been taking her to play therapy sessions every week for the past nine months. After a few months of observation and hard work, I learned how to play the therapist role and bring it home. We now do these weekly play sessions at home.
It’s helped so much. It’s also been SO hard and mentally draining. I’m in therapist mode all the time. Our language has changed, but it’s not natural for us yet. I have to really focus hard to keep myself in check and talk to our daughter and support her in the ways that she needs.
A lot of great things have come from these special play therapy sessions that we do. Caroline has really opened up to us in the last 9 months. And a shocking detail caught my attention.
Our 5 year old has regrets. If that doesn’t cut a mom to her core, what does? Oh my gosh. Caroline has regrets, and they aren’t small.
She told us she wishes she would have held April, said hello and goodbye, or given her a hug. She wishes she would have told her she loved her.
And when she told us this, suddenly her fits started to get bad again. The downward spiral started to happen for all of us. She’s throwing fits because of some BIG emotions going on.
I’m feeling devastated because our 5 year old has regrets, and also because I feel like we’ve worked so freaking hard over the past 9 months, and when it goes south I feel defeated.
I haven’t been putting my therapist hat on. In fact, I’ve done the opposite. I’ve almost retreated from it. It’s almost like I’m failing on purpose to just avoid actual failure.
Not only that, I’ve been absent. From so many things.
I’m not writing (as evident that I haven’t written on here since DECEMBER- two months ago).
I’m not present in the TFMR group online. I check in to make things are running smoothly and let new members in, but that’s about it.
And people noticed. People took notice.
My husband called me out for my basically shitty behavior at home. But he did so in such a wonderful and supportive way. It got me talking and owning up to it.
My husband keeps telling me to take time for myself. He sees that I need it and he tries so hard to make it happen. It’s easier said than done with a 5 year old and 1 year old at home, but I know it’s very needed.
One of the TFMR group members also reached out and asked about my silence and if I’m ok. It’s really helpful to be noticed. So thank you.
I’ve had two minor surgical procedures done in the last 30 days, and I’ve really been trying to focus on feeling better, so I’ve been focusing on seeing doctors and getting labs done, and a whole slew of tests. I’m fine and there’s nothing wrong. I think I’m just freaking stressed. Stressed, sad, angry, defeated, worried, scared, etc.
So the past two months have been somewhat silencing for me. I’ve been super busy with doctors, 5 year old fits, and wrapping my head around Caroline’s regrets. And I’ve been not so focused on me.
I’m trying to help Caroline work through these regrets. As moms we all know she should feel no regrets. She did nothing wrong. She chose to come and that’s huge. It was scary. Heck, I was scared. I was scared to hold my dying daughter. I was scared to let go. There are so many things I wish I could change about what I did that day. I’d do more, I’d reach for her sooner. So many things.
Caroline’s therapist told me something that I thought was very eye opening yesterday. She said that children in situations like that react to their loved one’s, not the situation itself. Caroline’s grief is mostly about the sadness she saw take shape in her Mama and Daddy at the time.
I had been starting to wonder if we’d done it wrong. If we should have just kept her home, kept it silent and never even told her what was going on. We could have shielded her from the pain of losing her sister. She was young enough that she didn’t HAVE to know. I keep having these thoughts that we did this- we caused this.
The reality is that regardless of what we include our children in or not, they know. Especially a highly sensitive child like Caroline. She still would be grieving. She’d still be reacting to our sadness- then and now.
Caroline had a right to know her sister. I want to be able to speak April’s name freely. Caroline should have had the option to come to the hospital. I am so glad that we gave her those choices. I am so glad that we had those options to give. And I am so glad that Caroline speaks of April every day.
This road wouldn’t have been any easier had we changed that.
I’ve been working on writing some children’s books on grief- specifically related to termination for medical reasons. They are based on our story, and what we found to be the best way to talk to Caroline about the situation.
This is what’s healing my heart right now in this hard time.
I know we did this right. I know in my heart that we made good choices. I know that this pain is just love. I know that we are strong and we can do this- all of us. I know that our daughter is working through her grief in her own ways, and that she’s allowing me to support her, and that is fantastic. Thank goodness she opens up to us. Thank goodness we’ve given her the platform to do so.
Sometimes we will all fall. This road doesn’t end. Not in 3 years, not in 10. There’s just going to be hard moments for all of us at times. I might fall silent. I might fall screaming. But I also know that I’ll get back up.
