You should still do the math

To the new parents of multiples:

You are about to be very tired. There really isn't any way to avoid it. Embrace it. There will come a night when you and your spouse will sit up rocking babies in dimmed light and one of you will begin to do the math. You will pull out your calculator or your phone or you computer and you will calculate just how much of your savings it would take to have someone there to help you through the night, and just how long you could keep it up. It will be a ridiculously large sum but in that dim light it just might sound worth it because what you will be facing will feel impossible. Save your money. You will need it for diapers. Those nights are some of my fondest memories. Those nights are the source of some of the most pride. We did this together, as a family. The silly things those kids did to try to stay asleep when we wanted to feed them, or to try to stay awake when we were ready to start the clock over again will be memories that you would never trade. Hold on to them. Have a camera out. Use it. Some of the pictures we never thought to take still break my heart; the morning collection of bottles spread across the kitchen counter, just dumped there in an effort to collect 37 more seconds of sleep, the paci-plugged swaddled burritos all lined up and ready to be re-delivered to their cribs, pumping milk in the spare bedroom with a baby balanced between my shins and another on my lap, even shedding tears supporting bottles in both hands. Those pictures are only in my head because we were so focused on getting it done. Your days will feel long, with naps littered in. Your house will be loud and cramped and cluttered. You will hunt out pacies under the cribs, you will wear clothes covered in bodily fluids, you will wonder why you had all those baby showers when all you really needed was burp cloths. Do it together. Enjoy it together. Your team has just doubled, or maybe now you are outnumbered. It is something few people get to experience. It is something you get to experience. Congratulations on your babies. They are going to be a lot of work but they will stay just barely on this side of impossible. 

And yes, when this stage passes there will be a part of you that celebrates. More on that here. 

 

Our 'so much fun day'

Participation

I had been wondering lately if there was a baby carrier big enough, supportive enough and appropriately positioned to allow me to carry Mya occasionally. She is a lot to handle with her limited trunk control when you have to support her weight and her floppy greatness, so I can't carry her for very long before my arms get tired and she looks truly uncomfortable. I was also worried that sitting across my front would be too much stretch for her little post-surgery hips. It turns out there is a solution and it lives here ---> Kindercarry, and thanks to some great advice from a fellow mom and a little leap of faith it has arrived. Typically her experience when we go to the park is a quick trip down the slide in my arms followed by even quicker visit to the token special needs swing that is far too big and complete with safety straps that no longer strap. Then she goes back to her stroller and watches while I try to both stay close to her and keep an eye on my timid duo. Instead, today when we went to the park she got to participate. She is only limited by how much I can do, and it turns out I can do a lot. She very much enjoyed the ride.

Self-portraits are the best. She really can breathe, she just likes my shirt.

Having so much fun

Ella is the first to climb the rope ladder. She turned at the top with a giant smile 'I did it!'

Well this is different

I am almost afraid to say it out loud, because we don't know how long it will last. But I have to say it out loud, because this is crazy. Those seizures we have seen every day, multiple times a day, for the last 880 something days have been missing for nearly a week. We can't quite say we have seizure freedom because they seem to have been replaced by something different. But these new seizures must not be nearly a gnarly because this new child is unlike the child we have known for 880 something days. She smiles, in response to things that should make a child smile. All day long. She makes eye contact like she is present and paying attention to her world. The other day she laughed. She was hitting her wind chime and the sound must have been funny. I never dared to dream of a laugh. And because we can never fix something without breaking something else, she also doesn't sleep. But there are way more potential solutions to insomnia than there are to intractable epilepsy so we will take it. We started a new medication 3 weeks ago that must be working, or who knows what is going on really but it happened so fast. We were so ready to give up. We were so tired and so discouraged and so sick of cowering under the big dude standing over us with the big stick that we were really very ready to give up. I feel like she is telling us to keep fighting. And we really don't know how long it will last, but now we know it is possible.

This is what we are fighting for

sometimes I think we forget. Welcome back Mya. Please stay a while.

I usually can't remember where I left my purse

A: What are these Clayton?
C: Them are gloves. You wear them when its dark outside when you go with daddy to find Eya's yellow cup. The yellow cup was by the tree daddy! You use a light daddy.
A: Clayton that happened in like September.

My maniacs are going to be three

There is a lot of comedy in this house these days. Or maybe it is more chaos you just have to laugh at for fear of screaming. Clayton does not like things to be wet. C: My placemat is wet! A: It just caught a drip bud, that's what they are for. C: My shirt is wet! A: It will dry. C: My thumb is wet! A: Well, take it out of your mouth. C: My face is wet! A: That is because you have been crying about being wet. Who knew there were so many ways to be wet. Baths? Those are fine. Obviously...?? They have taken to my shoes. One by one on Sunday as I worked on paying bills I watched my shoes parade through the kitchen and back out again until at least 30 minutes had passed and I realized: wow I have a lot of shoes. And I realized this because they were all collected in a laundry basket being carried across the living room by my almost 3-year-olds wearing size 9 women's flip-flops, black and brown.

There is also a lot of arguing. C: I want to be first. E: No! I want to be first. A: Here, Clayton you are the first boy, Ella you can be the first girl. All good? E/C: Yes! And singing. And arguing about singing. They like to take little phrases and sing them to random Barney tunes. It goes well for the first 3 versus until someone starts singing faster or slower than the other. C: Stop singing Eya! No! No singing Eya. E: lala C: No Eya! E: Be happy Tayton, you have to be happy! C: Mommy my face is all wet!

But mostly they are very sweet. Last week they reportedly held hands the entire time they were at school. They walk over just to tell you they love you 'vewy much' or to whisper they missed you that day and to ask you to play. They need all 4 babies and all 8 blankies and 2 books before they can be tucked in at night and they wake up singing jingle bells in the same bed, usually Ella's.

I am not really sure how we have survived to three, but here we are.

How are you?

Sometimes I feel myself leafing through the prepared responses: things are good. busy. always something to keep us on our toes. But are you really asking? Are you just making conversation or do you really want to know? If you are really asking I might just tell you: I'm tired. I'm numb. I'm tired of being tired and numb. I'm just trying to figure out what the next hurdle will be. when it will be. wondering if it will knock us over or if we will just brush it off. I'm just trying to stuff the tired and the numb and the worried under the couch next to the forgotten doll and the runaway bean. They seem to be here to stay and so we have to learn to coexist. Sometimes coexisting is hard, it seems.

The other day I was talking to the insurance company's nurse. The one that calls every time we are discharged, always at the wrong time. The one I usually tell we are good, we have all the resources and support from the hospital, as I wrestle the toys from the troops and measure formula and try to multitask my way through my day. But this time she called (back, again) while Ella and Clayton were at school, while Mya was still asleep. And so when she asked for our story, Mya's history, I gave it to her. 100% g-tube fed, no she is non-verbal, non-ambulatory, likely (it is my job to be her champion so I like to leave room for hope) always will be, hasn't smiled in a year, not really. Seizures 5-15 times a day. Erratic sleep schedule and apparently likes to hold her breath throughout the night. They tell us that is really very bad. etc, etc. And she says: Wow! Do you have any other children? And I say, well yes, Mya is a triplet. And her response: Oh my gosh, Alicia. How are you? I don't know, alright I guess. I think we are just used to this by now.

They sent us to ICU at 4am. The sleep study was supposed to end 2 hours later. They didn't feel safe to keep her for 2 more hours. We do this every night. I give myself permission to feel conflicted and a little bit numb. We are learning to coexist but really what I want is for my daughter to be okay. When I hold her at night to help her sleep I don't want to feel her stop breathing. I don't want to know what she looks like when she panics. I want to know what I should be preparing for or not preparing for. I want to think that the doctors are wrong, that the odds are actually in our favor, that we are worrying for nothing, that 10 years from now she will be just the child she is today only with seizure control, and head control, and more smiles than we can count. I want her to be comfortable. And happy. Things are good.