started from the bottom and now he’s here


Overheard today under The Big Top:

Daniel: Are you proud that I’m going to start 6th grade next week?

Mom: Very proud, Daniel. And very excited too. How about you?

Daniel: Yeah. But I don’t think I’m ready for 8th or 9th grade.

Mom: Of course you’re not ready for 8th and 9th grade. You need to work through 6th and 7th grade first. One grade at a time son.

Daniel: You’re right mom.

Mom: Of course I am. I’m sure that you will make 6th grade life yours.

Daniel: Yeah?

Mom: Yeah. The odds are in your favor.

Daniel: Like when I was born?

Mom: Yes.

Daniel: Like when I was so small that I fit in your hand?

Mom: Yes. You were born with incredible odds against you and yet one by one you beat down those odds. You beat things when you weighed just one pound that most people will never face in their lifetime. 6th grade life? You’ve got this, son.

Daniel: …smiles and hugs his mom…

And then we bring out his NICU memory box from the back of his closet because sometimes lately he wants to remind himself of where he started from.

Daniel: I was really THIS small?

Mom:: You were indeed THIS small!

Started from the bottom…

Yeah!

Bring it on 6th grade life…bring it on.

Oh, and, OMG my little boy, the baby boy who really did fit into my hand the day that he was born, is starting 6th grade next week!!!

 

because you gotta have hope


Here we are at the water park today to celebrate Hazel’s 6th birthday. It was triple digits and as hot as it can be expected to be in the Central Valley. It was hot! But with the water fountains spraying cool water everywhere, and the hot breezes picking up water droplets and carrying them around, it wasn’t so bad. We were in the shade. We stayed hydrated. We played in the fountains and got wet. It was good. It was even better because we all were there for Hazel.

All was good.

Well, except for Daniel. He wasn’t wearing swim trunks because he wore them yesterday. They were rinsed and hung to dry last night but, no, he could not wear them because they were just rinsed and dried. Yes, he could get his clothes wet. Of course it would be okay. His parents and his sisters, all in not-for-long-because it was so hot wet clothes assured him that it was okay, Yes, but no. And so he stood at the edge of the water fountains, watching people running around, getting wet, screaming, yelling and laughing, and he disapproved of it all.

Don’t try to understand. You’ll hurt yourself. Only someone on the spectrum or someone living with and loving someone on the spectrum will get it. You don’t fix this. You don’t force. You just let it be. Of course someone tries to intervene. Someone almost always does…because they know better.

Walk away, I think to myself. Just walk away.

Better yet, stand next to him. Let him talk to you, when he is ready, about whatever he wants to talk to you about. It’s likely to be about Hot Wheels or Legos or the Lego Batman game that is coming soon. Yes, that isn’t very interesting to you. But it’s not about you if you really care about what he is feeling right now surrounded by wet, noisy, crowded chaos and not wearing clean, swim trunks.

I am part of a support group for parents of micropreemies because life in the NICU is scary as Hell and the NICU life…the pain, anxiety and hope never, ever leaves you. You spend, days, weeks, months standing next to your baby’s bedside watching them struggle just to breathe or find yourself facing the agony of making decisions about procedures that may or may not save their lives or spend the first  few years re-living those 132 days every time you find yourself back in the hospital with your child, the former 1lb 6oz 24 weeker and you too will find that it never leaves you. No, not even years later. Participating in this group has been good. Parents like us find that we are not alone…even if we feel that way…sometimes…all the time.

The other night I was messaging back and forth with one of the newer moms in our group whose baby boy is only a month old now and, of course, still in the NICU where he was born. Her little guy is doing as is to be expected two weeks post open heart surgery and on a ventilator. He has his good days. He has his bad days. Of course this means that his parents have their good days and they have their bad days too. For her, today was a not so good day as her little man had a major setback and his feedings were stopped again. As she came home from the hospital, she got a call from her dad who has been less than supportive (her words) of the whole NICU journey questioning every decision she has made along the way. Still, she loves her dad and he loves her, so she poured her heart out, tearfully sharing her worst fears after a bad day in the NICU with her baby boy. His response, she shared with me, was most definitely not what she needed or wanted to hear…especially from family, from her dad.

He doesn’t understand…she tells me.

He has no idea how much it hurts me when he says the things he says…

Why is he like that?

Is he ever going to understand how hard this is?

I want to tell her that it is his own fear and perhaps a little guilt that is talking. I do tell her that.

Is he ever going to understand? Is he ever going to just be there for me, for my baby? Without judgment? Without second guessing everything that I do?

I pause and think of my own son, our own NICU journey and the journey that continues on even to days like today at the water park and the people who have been with us, loving us, supporting us unconditionally all the way…and those who have not. I think of those who have grown to love Daniel, accept him as he is, try to understand him, try to relate to him on his terms, learn how to support him medically, emotionally and intellectually…and those who have not.

I sure hope so, I text back to her.

I still hope so…for us…for Daniel.

Our conversation continued on for some time more where I offered her all the patience, love and support that she needed because that is what she needed at that moment.

Meanwhile, today Daniel soon enough on his terms, in his time, stepped into the fountains and got SOAKED!

 

5th grade life


In the beginning…

And in the end:

Note to self: when taking end of year pictures with your son’s teachers in order to capture a glimpse of how he has grown you might want to give his teachers a heads up and not let Daniel choose the setting as it was a rather bright, windy afternoon and Mrs. B and Mr K both were busy packing up their classrooms and moving boxes. Just saying. Take note, self. Write it down for next year.

Meanwhile, don’t you just love Human Growth Hormones? Accelerated velocity, y’all. That’s what this is. It’s kind of cool to see for the first time that your child is visibly taller at the end of the school year…at the end of his 5th grade life.

Bring it on 6th grade and Middle School!

Hold me!

the last week


It’s going to be a short week. It’s going to be a busy week. It’s going to be a hectic week. It’s going to be an emotional week…so many feels…there’s no getting around that. It’s going to be a happy week. It’s going to be a week of graduations, celebrations and lots of pride…so much pride.

Let’s start it off right with this.

I can’t imagine never not being amazed with this kid of mine. I imagine that he will soon grow tired of my amazement because he is almost a teenager as he likes to remind me pretty much every day. That’s okay. He can do that. I, in turn, will always marvel over the miracle that he is because, trust me, sitting by his bed every single day of those 132 days in the NICU watching over him the last thing his father and I could imagine was moments like this. Living through all those days filled with so much pain, anxiety and hope we kind of earned the right as NICU parents, because although we left the NICU with our baby boy 12 years ago, the NICU never leaves us. So yeah, we’re just a little bit emotional and over-the-top proud of this amazing, miraculous child of ours.

He’s proud too.

He should be. He worked very hard all year long for this.

Of course his teachers, aides and even the principal are proud of him. I like that you could see that pride reflected in the faces of his teacher and his principal as he accepted his awards today. I know that his principal gets just how remarkable all of this is for Daniel and for us. Having sat with her many times in a NICU years ago caring for her baby and supporting her I know that she knows.

And now there is literally only three more days of school.

 

the inconvenience of awesome


Aw, growth spurts! So much fun…said no parent who JUST bought their kid those out-grown athletic shoes or three pairs of must-have skinny jeans ever.

When I was a girl I discovered just how awful growth spurts could be as in Mommy-Dearest just bought me those shoes or those pants or just let out the hem of those dresses and pantsuits (we wore pantsuits back in the day, don’t judge) with no more material left to hem. She’d be frustrated and angry that I was growing like a weed and I would feel bad because I clearly should have better control of this growing thing…at least that was my perspective as a 12 year old kid not understanding the inconvenience of your kid growing like a weed when there are bills to pay and groceries to buy to feed your ravenous, growing weed.

Then I became a mother; a mother of kids that grew and grew like weeds. Often growing like crazy at the most inconvenient of times like when I had bills to pay or groceries to buy to feed those ravenous little weeds of mine.

I could not seem to keep Zoë in jeans that were soon too small or impossibly too short literally a month after I bought them. And replacing Jodie’s split sole, black tap shoes that were scarcely worn for only two dance competitions really sucked sometimes as did emergency alterations of custom made costumes that were custom made to allow for grow room.  I mean…how rude…how inconvenient…these kids are growing much too fast!

And then I understood.

Oh.

So now that Spring has really sprung, Daniel is ready to break out the shorts. But the shorts are much, much too small. Two sizes too small. Shorts he has worn for the last two years of Spring and Summer…perhaps more. Shorts that are clearly much, much too small.

Oh happy day!!!

Human growth hormones, I love you so much…except for the fact that this is a helluva time for the kid to have outgrown his clothes because there are bills to pay…too many bills…and these kids seem to be hungry all the time…especially that kid who is finally GROWING!!!

So inconvenient but so freaking awesome!!!

Don’t worry, the mom of the 8 year old who apparently is wearing shorts two sizes bigger than Daniel’s new shorts tempered my excitement and frustration by pointing out the fact that her 8 year old is two sizes bigger than my 12 year old….as moms of kids who are not growth hormone deficient do.

Thanks!

Us moms of kids well below the growth curve their entire life, with non-functioning pituitary glands, love to hear about the burden of your overgrown child. It’s so…encouraging. Thanks.

Still, it is pretty damn awesome to pack away forever the shorts your son has worn every Spring, Summer and Fall season since second grade as his fifth grade year is winding down because this is normal. This is what “normal” parents do with their kids as they grow. This is just more “normal” for us to celebrate as parents of this mighty, former micro-preemie of ours, as parents of micro-preemies do…celebrating the normal.

So damn awesome!

Now to figure out what Peter to rob to pay Paul for the new shorts, the shorts that fit. Hey, at least they were on sale!