Remembering

IMG_9768Each October 15th is Pregnancy and Infant Loss Remembrance Day. At 7pm, families who have lost babies light a candle for an hour in their memory. Doing so creates a “Wave of Light” across the nation, as we remember and honor our little ones.

I look forward to this day. Six years out from losing Charlie and with the chaos of young kids, it’s rare to be able to pause, reflect, remember, and honor Charlie. Last year, this day was difficult. Liam was the age Charlie was when he died, which brought up a lot of trauma reminders.  I was also in the throws of a pretty dark postpartum depression. It’s nice to be in a different space this year.

I appreciated that a few family members reached out their support, lighting candles for Charlie, but also checking to see if I was ok. I told them, that yes, I am ok! This day brings up painful feelings of loss, but those feelings feel sacred, tender, and beautiful.

I couldn’t always say that. Especially in the early years of grief. But now, I actually welcome an experience to connect to those feelings. Like I said, daily life is chaotic and it’s too easy to get lost in the swirl of demands. Grief anchors me. It feels cleansing, in a way I can’t actually describe well. But it resets my priorities. It reminds me of what is really important in life. It also provides an opportunity to reflect on how far I’ve come in this grief journey. I love bringing out Charlie’s photo to put by the candle and see all our children together in one space.

I also value the experience this tradition creates for my children. I loved Liam waving at Charlie and playing with his photo. It was also striking to see Hailee’s genuine grief reaction that arose later that evening. She cried for at least an hour over the loss of Charlie but also the “twin” that we lost in the Ectopic pregnancy. She cried that she should have two other siblings here on earth with her. (I didn’t mention the five other miscarriages I’ve had! ha!)

Then, she asked me how sure I was that Liam wasn’t Charlie, come back to us? That is such a difficult question to answer. It’s one that’s come in my head too. Part of me wants to believe that Liam could be Charlie. It would heal SO MUCH. They also look extremely similar! But I believe Charlie and Liam are their own little people and believing them to be the same negates the work we do with grief; with creating meaning, honoring painful emotions, rumbling with difficult questions, and appreciating the depth and beauty we experience through moving through grief. I also want Hailee to understand and believe, as I do, that Charlie is her guardian angel, who watches over her and all of us. I continue to look forward to seeing Charlie and holding him again one day. That night I snuggled Hailee as she cried herself to sleep. Hopefully, one day, grief won’t feel as confusing as it does for Hailee right now. I will continue to support her feeling all her “feels” and loving her through her own grief process, as I’ve had to be patient and compassionate with myself through my own grief journey.

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“Liar, Liar, Pants on Fire!”

Cami is a little liar. Or maybe, in service of avoiding labels, Cami has a tendency to lie frequently. It’s somewhat funny and I admire her creativity. But it also creates a conundrum for how to direct her creativity in more adaptive ways.

Recently, Cami had a playdate with one of her favorite little friends, Emme. I was at work, so our nanny was watching them. Cami told her little friend that we had a pet kangaroo. She told her friend this lie in all earnestness and convinced her friend it was true. When her friend wanted to see the kangaroo, Cami expressed that the kangaroo had gotten out and was lost! Oh no! They needed to go scour the neighborhood in search of the lost kangaroo! So the girls began running around the neighborhood trying to find this elusive, exotic pet. They did not tell our nanny where they were going. After the nanny had gotten Liam down for a nap, she discovered the girls were missing and were no where to be found! Our nanny ended up having to get in the car and drive around the neighborhood looking for them. Later, when Emme’s mom, Sarah, picked her up and Emme told her mom about the kangaroo, Sarah asked Emme why she believed Cami had a pet kangaroo. Emme replied, “Because Cami is my best friend and would never lie to me.”

Then, last week at parent-teacher conference, Cami’s kindergarten teacher showed me some worksheets where Cami had begun to write her name differently. Cami had told both another parent volunteer, and her teacher, that I was changing her name to Caitlin and that she wasn’t going to be Cami anymore. Not only did she tell this lie, she proceeded to act on it and tried spelling her name differently on all her homework sheets. “Keitliin.” This gave us all a pretty good chuckle.

A few months ago, I sat Cami down and tried to evaluate if she even knew what a lie is. I gave her some scenarios and asked her to tell me if it was a truth or a lie. She was able to tell the difference. I tried to transfer that into talking about how she lies. I don’t think Cami lies to be overtly deceptive. I do think she lies to get her way, sometimes, but more often than not, I think her fantasy world blurs with the real world and she doesn’t see the harm in telling fibs.

What equal parts impresses me and scares me is that Cami is able to lie with sincere earnestness. She lies easily and naturally. I often wonder how many times she lies to me and I don’t catch it? Right now, her lies are pretty benign. And, like I said, I love her imagination and admire her creativity, but we need to channel this more pro-socially before she becomes a teenager! Or else we are in BIG trouble!

The elusive goal

Hailee wants to score a goal in soccer, so badly. She has played soccer for several years now and has never scored a goal. A big part of that has been because she most often plays mid-field. But also, she isn’t aggressive and confident when she gets close to the goal. She has amazing assists for other teammates to score, but has yet to earn that glory herself…and it’s wearing on her.

Today she came close to scoring but another teammate ran in front of her and took the ball from her and scored instead. This deflated Hailee’s spirits the rest of the game. It also left her in tears in our car after the game.

It can be painful to watch, as your child psychologically spirals into self-doubt, embarrassment and shame. I tried encouraging her from the sidelines but she’d shoot me evil glances and thought I was “yelling” at her. I felt helpless watching her lose her fire and barely follow the game because she was so lost in her head.

As I continued to shout encouragement from the sidelines, I had flashbacks of my childhood sport-playing days and my own mom shouting at me from the sidelines. My mom was one of the loudest moms and my biggest cheerleader. She could also embarrass me. I remember her shouting once, “Smile Anna!” I don’t remember the context but I must have been grumpy and down, because either I, or my team, or both weren’t playing well. Was I sensitive and insecure like Hailee? Did I deflate easily?

I am always fascinated how life spins a full circle and how our children are little mirrors of ourselves. Aren’t I still sensitive?

Oh Hailee, we are so alike. We both feel things easily and deeply. Having this emotional sensitivity can be challenging, for sure. But Hailee, something I’ve learned that I want you to understand, is the importance of continuing to TRY. To not let yourself get bowled over for long. To pull yourself back up. To figuratively and literally, get back in the game! Pushing into the hard, making countless mistakes, learning from them, building resilience and strength, is how you will eventually score that elusive goal! But more importantly, it is also how you will learn that you can DO hard things.

Packards do hard things and we are strong. I will do my very best to try to teach you these important lessons. Maybe that was what my mom was doing from the sidelines all those years ago and that is what I will be doing for you! I will be forever, your cheerleader! I will probably embarrass you and annoy you. But I will continue to believe in you (loudly) until you also believe in yourself!

EpiPen Adventure

This last week, I took Liam into the allergist’s office for a “baked egg” challenge. This challenge involved eating a muffin over the course of a couple hours, starting with super small bites and then working toward progressively larger bites. Every fifteen minutes they would take Liam’s vitals and offer him more of the muffin, all the while being careful to monitor any allergic reaction. Liam was doing great. He made it over two hours in. He made it until the very last challenge, which was to consume the rest of the muffin. However, right before he was to eat it, he threw up everywhere! He threw up everything he had eaten, all over me and all over himself, his blanket, and the chair we were sitting on.

Now, technically, according to FARE guidelines, because Liam had ingested a “known allergen” (the egg) and he had one severe symptom, as characterized by the vomiting, he should have been given an Epipen at that point. However, when the allergist examined him, he had NO other symptoms and was acting completely FINE. Because he was acting so fine, she said she would monitor him for an hour and if he didn’t develop any other symptoms, she would just send us home.

An hour passed and Liam continued to act normal. So home we went. However, as soon as we got home, Liam’s eye started swelling. I called the allergist and the dr. said I needed to give him an Epipen and go straight to the ER.

At this point, I panicked. I was still covered in puke, so I quickly jumped in the shower to rinse off and changed my clothes. Then I grabbed Liam, who was pretty upset and so tired and took him downstairs where I got out the Epipen.

I sat on the floor, held him between my legs and restrained him, and with shaking hands, administered the Epipen in his outer thigh. Luckily, the Epipens we have talk to you so I didn’t have to think, or count. It told me when to release the cartridge. I then grabbed a now-screaming Liam and put him in his carseat to take to the ER. Luckily, my mom was in town, and had been with me all morning. She had come for moral support but we didn’t know to anticipate how important her support would be! She quickly drove us to the ER while I sat with Liam in the backseat.

Within minutes of him getting the Epipen, Liam became pasty white and kind of, zoned out. He wasn’t non-responsive, but was eerily silent. His breathing was also a little shallow. I was so scared and told my mom to hurry. However, within a few more minutes, Liam’s color returned and he even started babbling to me, which helped me breathe easier.

By the time we got to the the ER, Liam was super calm. I rushed him in, while my mom parked the car, and knocked on the window and told the receptionist he was having an anaphylactic reaction. She immediately took us back. Pretty quickly, a doctor came in to look at Liam. I told him what had happened and that I had already given him an Epipen. The doctor looked at Liam and his vitals and said, “Well, this kid looks great.” Liam continued to be so calm throughout all of this. His calmness was an added blessing. I was overwhelmed with fear and adrenaline and Liam just calmly snuggled me in my lap, helping to calm my nerves.

They kept us at the ER for a little over an hour to watch him and also gave him an oral steroid before we went back home. Finally back home, for the last time, I put Liam down for a MUCH overdue nap (wearing the Owlet), and slowly, began to breathe normally.

I called Chad, who I had been communicating with on-and-off throughout the day. He was on a business trip in California. He was supposed to stay overnight for another board meeting the next day, but I asked him to fly home. This was hard for me to ask because Liam was doing fine and the danger had passed. I needed him home because I needed emotional support. Chad questioned his need to come home but when I started crying, he immediately agreed he would fly home and re-arranged his plans.

After the fear wore off, I found myself feeling defeated. I was hopeful this baked egg challenge would go well and that Liam could begin to progress toward overcoming at least one of his many food allergies. But instead, now we know he also has anaphylactic reactions to ingesting eggs, whereas before he would just throw up.

These food allergies are scary and overwhelming. We don’t have a follow up appointment scheduled with that allergist because she said you can’t try the baked egg experiment again for at least another 6 months to a year, and in the meantime, the recommendation is to simply avoid those foods.

We do have an appointment still scheduled for Liam to start the Oral-Immuno-Therapy in a couple weeks…but we don’t feel good about it. Or we feel scared and we aren’t sure if now is the best time to start that treatment. We don’t have great reasons to not move forward except that OIT isn’t standard care in the US and it’s possible something new and less risky can come on the market in a year or two. I also feel anxious when allergists don’t agree with one another, as the two allergists we have seen, disagree on treatment strategies.

I’ve also lost a little trust in this first allergist who gave Liam the baked egg challenge. She should’ve given him an Epipen in the office, or monitored us for longer than an hour. When she talked to me on the phone later that day, she admitted she thought that maybe she should’ve kept us for two hours. Now, I have an unnecessary and expensive ER bill to deal with. I’m not really mad though, even though I think I’d be justified if I did feel that way. Instead, I feel validated at how unclear decisions can be in these tricky situations!

This parenting gig can be rough. Especially when knowing what is the right decision to make for our baby. Especially when that decision involves his health and trying to prevent life-threatening reactions! It’s overwhelming, this responsibility to try to keep our kids safe and healthy and thriving!

Since Thursday, Liam and I have been together almost non-stop. There has been a lot of snuggles, and playing, and nuzzling, and breathing in all his baby-goodness. I am so grateful Liam recovered well from this event and that his reaction wasn’t worse than it was. I’m so grateful Liam is back to himself, and just as happy as if nothing ever happened. He won’t remember that event, but man, I sure will! Hopefully, it’s not an experience we’ll repeat anytime soon.

I do feel proud of myself though. When called on to be brave and take action, I was able to do it. Although, I’ll admit I definitely dropped a few swear words! I think (hope) the first time you give an Epipen is the scariest, simply because you don’t know what to expect. Now, I know a little more and that decreases some of the fear for having to use it again. But, like I said, I’d rather avoid having to do that again, if possible! Sometimes I get really tired of having to do hard, scary things! I’m not whining, I’m stating a simple fact of our life.

Breathing, and pressing forward…