Today’s the day that should have been

Hi. It’s me. Miss MIA. I could rattle off a list of excuses as to why I’ve totally fallen out of the blog world (summer craziness, chasing around a 9 month old, blah blah blah). Really it can all be summed up as plain old adulting. We all know what it’s like, we all understand, no excuses needed. Adulting happens whether we like it or not.

(It’s currently been an hour since I wrote the last paragraph. I guess babies like to eat occasionally, and apparently it’s up to us as parents to make it happen. Talk about “adulting”.)

Now back to blogging.

So, I’ve risen out of blog world hibernation because it’s one of those days. (Hold please, crying baby crawling over to me).

Back again…so yes, today is one of those days. One of those days not necessarily on the calendar, or a day I’ve thought much about over the last two and a half years. But a day that has snuck up on me. Quinlan should have started kindergarten today. He should have been one of those kids standing at the front door with one of those signs telling what he wants to be when he grows up, who his teacher would be, his favorite book, and all the things he SHOULD be.

And to add to all the feels of today, tomorrow he would have turned 5 years old. Five years since he made me a mom. Five years since my life changed forever. And not just forever, but FOREVER.

So, yes, it’s one of those days, one of those weeks.

With that being said, and the feels coming out in full force, I wanted to make a list of all the things as a mom that I want to do, wish I could have done, and hope others do. But mostly things I want to remind myself to do/keep doing even when we have a teenager who no longer wants to be in the same room as me. Being a bereaved parent, I think our brains work in a different way. Slightly more paranoid, yet maybe more forgiving. More anxious, yet also more freeing. It’s really quite confusing. (Full disclosure: I am not a professional and do not expect anyone to take any of my advise. But maybe something I write will be exactly what someone needs to hear one day.)

In no particular order:

  1. Give ALL the hugs – even when they just won’t go to sleep and keep reaching for you, squeeze them tight (#currentmood)
  2. Rub their backs until they fall asleep for as long as possible. Yes, I will get in my car and drive however far away I need if Baby Bear needs a mama back rub to fall asleep, even when he’s 50 years old. I’ll be really old, but I’ll try my hardest.
  3. Take the pictures – especially the milestones, the first days of school, and the selfies. There is no such thing as too many pictures. Just wait for the hundreds of “first day of school” pics Baby Bear will have taken. Sorry in advance! Unfriend me now.
  4. Laugh with them, even when you’re feeling down. They need to see it as much as you need to feel it.
  5. Let them sleep in your bedroom as long as you want – I tried to keep him under my watchful eye until he was at least 10 years old, but, that didn’t work out. (Sadly I’m only half kidding about this one). Turns out he needed his own crib and I needed to not be awake every hour making sure he was still breathing. Not good for my sanity.
  6. Sit in the backseat with them, even after they “need” you to. I used to have to sit in the backseat with Quinlan every car ride because of his medical condition. There are times now that I’ll sit in the backseat with Baby Bear just because. No reason other than I want to.
  7. When they fall, don’t always pick them up (only sometimes). Does that make me a bad mom? We are currently in the crawling, pulling himself up on EVERYTHING stage and with all my might, I try not to reach down and pick him up every time he falls. My husband will attest to the fact that I will immediately jump, ask “Is he okay?!”, and want to coddle him, but, he is fine. In fact, most of the time, he laughs afterward. My child the daredevil. However, the minute there is blood, yes, I will freak out, coddle, jump, run, pick him up, etc. etc.
  8. Go with your gut. Ask all the questions. Get every opinion you need to feel comfortable with anything going on with your child. They have a hangnail that looks funny, take them to the number one hospital in the country. You can NEVER be too overprotective of your child. You will never seem overbearing or crazy for wanting to know exactly what is going on with your child. You are your child’s best advocate.

It’s a small list, and yes there are a million other things that could be added, but these are the things right now that I wish I could have done for Quinlan, and things I hope I can continue to do for Baby Bear as long as possible.

Take nothing for granted, and take all the pictures. You will never get sick of them.

💚Mama Bear

Today’s the day for a dip in the lake

Guess what I did this weekend. I brought Baby Bear to the lake, and he went in the water!

Sounds like a pretty typical weekend for those dealing with this hot New England summer (I’m NOT complaining, bring on those beach days…at least on weekends, when I’m not sitting in an office).

For me, this is anything but typical.

My family is lucky enough to have access to a cottage on Lake Winnipesaukee during the summers. A place to sleep, a place to sit on the sand or float in the water pretty much any time we want. Nice, right? Except, in the almost five years since becoming a mom, this is the very first time I’ve brought my child to the lake. I’ve been up there with family, friends, cousins, cousins kids, nieces. I’ve been up there pregnant and not pregnant. I’ve been up there prior to being a mom and after becoming a mom. But never have I been up there with my child. Until this weekend.

Quinlan was born towards the end of lake season. By the time the following summer rolled around he was still admitted to the hospital. The following summer when he had finally been discharged, he had a trach, ventilator and g-tube. All of which make it hard (not impossible, but hard) to make the one and a half hour drive to NH, stay overnight, never mind taking a dip in the lake. Again, not an impossible task, but one that never seemed like a viable option for us.

I had often thought about what trips we could take as a family. It was a short list. Renting an RV so we could drive a good distance but still be able to keep his ventilator, battery, O2 monitor, and g-tube plugged in. And, of course, keeping track of where all the closest hospitals would be at all times. We looked into renting a house for a week. Again, an easier vacation so all of his machines could be plugged in most of the time. This would involve checking with the renter to ensure electrical outlets were up to date and could handle multiple machines being plugged in continuously. This could be doable. And yes, still mapping out exactly where the closest hospital was located. It wasn’t that we didn’t want to take him on vacations. It was far from that. It’s that being the parents of a medically complex child, especially one that requires being plugged in at all times, literally plugged in, puts a bit of a different spin on “vacationing”. No vacation is easy with kids. In fact you usually need a vacation from the vacation (from what I hear from others but am slowly learning for myself). To leave the comfort of your own home, where you know where every extra trach is, which drawer every piece of gauze or medical tape is kept, and having a nurse as another set of hands and eyes watching over your child, that’s scary. If you’re lucky, you may have a nurse or two that will come on vacation with you for a couple days. But I’m guessing having multiple nurses abandon their day to day lives to vacation with you is rare, and no one can blame them.

Packing up Baby Bear for two nights away was a bit of an ordeal for me. Not because I’m new to packing up a child, but because packing for two days when it doesn’t include a hospital stay, extra g-tube, ventilator battery and ambu bag seemed surreal. Yes, I certainly overpacked. Did he need 12 bibs for two days? No. Three days, maybe, but I still could have gotten away with far less. This new “normal”, which actually IS “normal” for many, is something I’m still getting used to. (Next time I’ll cut the number down to 8 bibs).

It’s not easy to sit here and feel fully excited about doing this “typical” activity. Something I can say I’m finally able to do, that I’ve wanted to do for years. In my mind that makes it seem like there were no firsts or “finally able to do’s” with Quinlan. Or that the activities we did do with Quinlan I wasn’t excited about. Clearly that wasn’t the case.

I guess it’s just that every new experience that I’m able to say “yes, I’ve done that” makes this new world of ours seem that much more real. Real in the sense that our “abnormal” is being replaced by “typical” and that comes with all sorts of emotions.

Sometimes I still feel like I fit in better with the “abnormal” than with the “typical”. Is that normal?

💚Mama Bear