The Terrible, Horrible, No Good, Very Bad Sleeper

I have no idea what this kid needs from us. I am sure that we’re doing everything wrong, though.

It feels like we have tried everything to get him to have good sleep habits and yet…nearly every night involves screaming and kicking and throwing things and hours of time. Frustration and anger and tears and…youtube videos.

Yes…as a last resort, we are now regularly putting him to bed with youtube videos.

That is the wrong thing, I know. But what is the right thing for this child? Because we have tried everyfuckingthing and this seems to be the only thing that ends with him sleeping without us completely losing our minds in the process!

Even so, bedtime is a nightmare. We feel powerless. I personally get so dejected and angry when I finally leave the room (usually some time after 10pm). Hence, this blog post…

David takes on bedtime most nights now because it has taken a serious toll on my mental health. He fares better than I do, but he can’t do it every night. It wears a person down.

I want a toddler who sleeps through the night.

Still true.

It doesn’t end there, either. Dez sleeps for a couple of hours before waking and he will throw a gigantic hour+ long screaming fit if I don’t tend to him in the middle of the night. Sometimes we go the screaming route with Dave going in there while I try to ignore it and stay in bed and get some sleep through the noise. Other times, I take one for the team and head in there. We try to take turns because once we go in, we usually do not emerge again until morning.

The parent who goes in there gets a toddler velcro treatment. With me that means Dez scoots his face right up to mine, breathes his hot toddler breath on me, and locks his hands around my head. He falls asleep peacefully while I try to breathe air that isn’t coming out of his mouth and hope I can get back to sleep while locked in his embrace. All night long it’s a game of “shove the toddler over to get some space and a few independent winks” and “oh look here he is right in my face again.”

I probably don’t need to tell you that I don’t sleep well like this. I am pretty sure Dez is the only one on the planet who does!

And I haaaaaate it.

I keep trying to come at this sleep thing from different angles, try to analyze the situation and read tips and…nothing. Nothing helps. It looks like we will just have to get through it. Sigh.

This is not a request for sleep advice (and good lord, please do not email me trying to sell me something!), just an exasperated rant from a very tired mom.

Please let this child figure this sleep thing out. 2+ years of shitty sleep cannot be good for any of us.

Double Digits

Tomorrow my first born son is ten years old. Double digits.

I’ve been trying to avoid thinking about this date as it loomed ever closer. The thought of Jack being TEN caused panic to bubble up in my chest and claw at my throat. My eyes would burn with tears and I had to hold back from clutching him tightly to me.

I didn’t don’t feel ready for this.

But the time is here nonetheless.

Jack almost 10

Looking like a teen!

One would think that after ten years as a parent I would feel more ready to let Jack grow up and move into the next stage of his life. But I haven’t been spending my time over the last decade preparing for this moment–not at all. After his cancer diagnosis, I focused on preserving his childhood as much as possible. And before that I spent a lot of time working to figure out how to be the mom he needed and haphazardly uncovering my own issues along the way.

I feel as if I’ve been sidetracked so many times. I’m not sure I’m much closer to knowing what I’m doing than I was on the day he was born. In fact, I feel that only now am I getting to the point where I can see the breadth of what I don’t know about raising a person to be a self-actualized adult. And I guess while focusing on all of that I simply forgot to prepare myself for the whole growing up thing.

But Jack will keep on growing even if I waste time being hung up on worries over the future.

Jack is an incredible human being. If I stop thinking about my own experience being his mother for even a second, I know that he will navigate the coming years in his own way and craft them into an adventure as he goes. That same creativity and empathy that seem to emphasize his youth right now will also help steer him on his path to becoming an amazing man.

I really just need to stand back and let it happen because, whether I’m ready or not, Jack is growing up.

Crystal and Jack in Bath

On an adventure together in England.

It’s A Hard-Knock Life (For Us Parents)

I have a migraine right now and my hip is fucking killing me. I would love to go to bed – I don’t even care that it’s not even 9pm on a Friday – but I can’t go to bed because Dez is trying to go to sleep in said bed and my presence is not conducive to him falling asleep.

This is parenthood. Sleep is like vacation to me – better, even, because it requires much less planning (and yet is no less elusive at times).

David and I are involved in a tag team effort at bedtime these days. I nurse Dez, then David steps in when Dez decides maybe he doesn’t want to go to sleep and tries to make a break for it. Daddy means business, though, and when he walks in the room, Dez knows his attempts at delaying bedtime are doomed.

Being the parent of a toddler is hard. I had forgotten just how hard. I guess that’s what happens when you wait eight years to have a second child! This little person who is most definitely his own little person and yet can’t do a damned thing for himself yet (except stuff too many yogurt melts in his mouth at one time) can make you question your choices in life, your sanity, and your self-worth. I had forgotten, but now I remember: I do not like the toddler years, Sam-I-Am.

Frankly, the pre-teen years aren’t seeming to be much better at this point. I’ve been meaning to write about all kinds of Jack-related things but it’s a big ball of complexity that I barely want to think about. The shortish version is this – he has been diagnosed with ADHD, dyscalculia (a math learning disability), and anxiety brought on by medical-related experiences. And in a year he goes back for more testing because the neuropsychologist isn’t sure she was able to get him all figured out.

At nearly the same time that we got the diagnoses and the rest of the results of the neuropsych testing, things at school got particularly bad. Jack and his teacher are at complete odds. It’s partly Jack’s fault and partly the teacher’s fault, and both of them are less than flexible people. We are working on Jack’s behavior, though I think we (and the teacher!) will just have to accept that Jack will have some bad days.

Therapy has been successful, though, so that’s a plus. Yay! I’ll take all the victories I can get.

Back to Dez…he’s a weird little fellow. He’s no longer that magical unicorn baby. He is vocal and can be clingy and so very quirky. He took his first unassisted steps a few days before Christmas, and then hasn’t walked since. He just goes around walking on his knees (which are now quite callused). He doesn’t say much, either. He has some words but very few that are clear. That doesn’t stop him from chatting, though. He talks a LOT – just not in English.

He also doesn’t sleep for shit. He is a terrible, no good, very bad sleeper. I think he must have gotten it from David because Jack and I both excel at sleeping!

He is a great eater, though. He’s got Jack beat on that!

So clearly we’re living a hectic existence right now. I know it won’t last forever and one day I will look back and miss the moments where Jack helps his brother walk around the living room or Dez snuggles up to me for midnight nursing sessions…but right now I am dreaming of peace and quiet.

Fewer headaches and a massage would be lovely, too.

Oh, What A Year

Desmond is one year old.

Desmond's 1st birthday

Desmond looking handsome in a bow tie at his first birthday party.

That statement makes me want to laugh and cry and shake my head and hide all at the same time. Where has the time gone? How can I slow it down?

That seven-pound, one-ounce boy who shot into the world last September is now a real person and not just a squishy baby. He has preferences and makes them known! He has a firm place here in our lives and it’s inconceivable that there was ever a time he wasn’t around.

At his recent well baby check-up, Dez weighed in at 21lb. 12oz. and measured slightly over 30″ (they measured twice but didn’t get an accurate reading because he refuses to lay down and be still). [Side note: I’ve gotten quite good at putting diapers on while Desmond is on his hands and knees or standing up.]

David and I sat talking the other night (a rare moment when the house is quiet and we can both still communicate before passing out) about our second son and his future. He is a driven little guy. Dez never stops moving, seeking, daring. We already know he is going to test our limits more than Jack ever has – this kid has no fear. Not only that, but when he is doing something he knows he’s not supposed to do, he hesitates and looks back to make SURE we are watching him – once he has our attention, he cackles and goes for it! He is one cheeky little dude.

Peek a boo

Dez playing peek a boo

At a year, he is on the verge of so many things. We are hearing the beginnings of words. They all kind of sound the same, and he is very selective about using them, but I’m pretty sure he says dog and Jack. When Dez can’t see his dad, he stands at the baby gate holding the bars and yelling, “DAAAAHHH!” over and over until David shows up.

Baby yelling

Dez yelling, “Daaaahhh!”

By the end of our recent trip to the east coast, he squeaked out a “bye” and finally learned to wave (although, again, he does so selectively and often AFTER the person is out of sight). He says a lot of unintelligible things, as well – in particular he seems to love making a grand gesture by throwing his arm in the air and letting out a stream of baby babble as if he were giving a speech.

I’m hoping one day I can say, “Desmond is a great speaker” and NOT “my second son is a dictator.”

He is, in a word, ACTIVE. He is cruising on the furniture, crawling super fast (and only in the last few weeks have I noticed he’s on all fours instead of on his belly), climbing over the dog, and he took to the stairs at his grandparents’ and aunt’s houses as if he had climbed them before in a dream.

Baby climbing the stairs

Climbing the stairs at 11 months.

He loves to throw a ball and is surprisingly good at it! He digs being chased around the couch or peeking over the back at whomever is sitting there. He has recently developed a keen sense of whether the baby gate is open even when it’s out of his site and will stop whatever he is doing (often, nursing) and propel himself toward it. One of us then has to dash across the room to shut the gate just before his little fingers get in the way. Dez then wails loudly until we distract him with something else (“Dez! Look at the ball popper!”).

That kid loves to eat, as well. He waves his arms excitedly when food appears and demands to be fed – especially if others around him are eating. Yogurt melts and puffs are his favorite snacks, but he will try anything from egg salad to meatballs (making good use of his six teeth). Food makes him pretty freakin’ happy. Oh wait – EXCEPT cake! We’ve tried cake twice and he threw it on the floor both times. How in the world is this kid related to me?

Baby with first cake

Dez about to chuck his vanilla cream cheese birthday cake onto the floor.

Dez expresses love for us now and it’s the cutest thing! Yesterday Jack was upset and climbed into my lap for hugs. Dez piled on, laying his head against Jack’s back and started patting Jack’s shoulder. And when we wake up in the morning Dez likes to climb all over his dad and me and lay his head on our shoulders. He shares things – he always shows me the star map on his dad’s phone and, less awesome, he shares his food with the dog.

We have our challenges with him. Aside from the fatigue that comes with chasing an active toddler (or reading every book that he shoves in our faces), there is also the fact that he still doesn’t sleep through the night. Jack didn’t sleep through the night at this age, either, so I’m not concerned but I AM tired. Not only that, but many nights David is the only one who can get Dez to go to sleep. That usually involves holding him, SHHing, and letting him thrash and cry until he passes out. He used to fall asleep to me nursing him, but no more (except for naps). I don’t know what that’s about. There is also the fact that he won’t stay still during diaper changes, as I mentioned before.

Separation anxiety is at a peak right now, too. Dez hates it when anyone leaves the room, but especially when I leave the room. He also has stranger anxiety and had no idea what was going on when Jack came home having cut all his hair off this past weekend! Desmond could not get into my arms – and away from his brother – fast enough. On the bright side, I suppose that means he is good and attached to us. And luckily he warms up to other people fairly quickly.

So…here we are beginning the journey into year two. I find myself both excited and sad. I can’t wait to see what Dez is going to do next, but at the same time I want to savor the moments when my child is still small and roley-poley and his world is fairly simple. After all, I am keenly aware of how quickly nine years can pass.

All in all, I’m so thankful for this sweet boy and count myself as one lucky mama.

Daddy and toddler

Dez and Daddy

Reconstructing The Past

Jack is starting therapy soon to address the post-traumatic stress issues that are causing us all concern. The short term goal is to address the  needle phobia associated with it, which is more accurately described as a “lab-induced panic spiral,” but ultimately he has a LOT of anxiety that controls him and if we could ease that even a little bit, I’ll consider it a WIN.

There are a lot of forms to fill out when you go to any sort of specialist, so I’ve filled out so many pages my hands have gone numb and started aching (seriously). Forms for the IEP evaluation, forms for the neuropsychological evaluation, forms for the ADHD assessment, and now forms for this new therapy.

They are all similar, but different. They all include questions about the past – and this is where I pat myself on the back for keeping records (something I’m less good about with Desmond – arg!) about Jack’s younger years. I have my blog, a baby book, the CaringBridge journal, and many, many pictures. I use all of these things to answer the endless questions and reconstruct the past because my own memory is full of emotion, which can often be difficult to explain in words.

I’ve spoken with the oncology team, the social worker, the child life specialist, several therapists, and all of Jack’s other parents (of course) about the best way to move forward and address this issue. I’m the collector of information and the main distributor. Perhaps this is because I’m a writer, or because I’m a mother, or some combination of things. It’s a little bit odd that it’s me in this role, though, because my memory in general resembles swiss cheese – some memories are perfectly in tact and others are just GONE. Still, it’s up to me and somehow I’m making it work.

This whole Leukemia business started with some general sickness and then a blood test. That blood test was traumatic – for me and Jack. He was 5 and had never had one done. He had never liked needles, but he didn’t spend a lot of time thinking about them…until that day when I had to hold him down and lock my legs around him in order to keep him still for the lab tech to insert the needle (note: always ask for a pediatric phlebotomist for your child!).

I know intellectually that he screamed and cried but I don’t have a specific memory of that part – that part of my inner film is a gaping hole. Holding down my screaming child while he was being hurt was too horrible to remember clearly, so I locked it up and threw away the key.

That night, Jack had his first night terror. I’d never seen one before (in Jack or in anyone) and it scared the crap out of me! I thought it was a seizure. I didn’t connect it to the blood draw at all, even though I knew the blood draw had been traumatizing. I wasn’t thinking very clearly at the time, after all.

But I’m thinking clearly now (mostly). And after filling out a ton of questionnaires and recounting all of the methods we’ve tried and reading over various records of that time when Jack was diagnosed and having witnessed several night terrors (that are pretty much always the same – screaming, thrashing, pleading “No no no no no! Mom! No!”) – all the dots finally connected enough for me to wrap my brain around it.

That initial blood draw, and then the wave of awfulness that followed (more blood draws, an IV, surgery, an MRI, x-rays, platelet infusion, cancer diagnosis – all within the span of 4 days), was the catalyst for this ‘needle phobia.’

Knowing all I know about mental health and having lived with PTSD for decades myself, it still took me this long to wrap my head around what happened to get us to a point where Jack can NOT STAND a blood draw. Stopping to think about it makes it clear to me – OF COURSE he is terrified of blood draws. Every time he sits down and holds his arm out to a white-coated person, he is transported back to that time 3 years ago. The emotions and blurred memories of a terrified 5 year old rush back to him and suddenly he is reliving the collection of medical traumas he’s endured since he first got sick.

Even though he’s 8 now, he is still not much more equipped to handle all of that now than he was then. To him, a needle is not just a needle – it is so much more terrifying that a sharp piece of metal. To Jack, a needle represents a 3-year battle for his life. And that battle has ended, but the winner is still unclear. The cancer is gone, but we don’t know for sure that’s it gone for good and that uncertainty leads to anxiety.

With cancer out of the way, the emotions that were pushed to the background over the last few years have resurfaced and they’re kind of taking over. Jack’s had two night terrors in the last week. His anxiety is at a high again and he has a weird, nervous energy about him that he seems unable to control. He has complained several times of “feeling like he’s going under anesthesia,” which I’ve gleaned is likely some sort of dissociation, and it comes upon him at random times.

Jack brain is reconstructing the past whether he wants it to or not. And my job as his parent is to help him get the tools to understand and resolve it.

To therapy we go.