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!

 

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.

 

along life’s path


Look at those rocks over there, Mom. It’s like walking in life.

My son said that during our Sunday afternoon walk this week.

I know!

Nothing surprises me, challenges me, inspires me more than the way my kids see the world. I may not always see it in the same way but that is really okay because, after all, we all see from different angles. So we stop and regard this rocky road to the left of our route. Daniel sees the smooth path in between the giant rocks. I, on the other hand, see the giant rocks…the obstacles blocking the way. I point that out to him and he is quick to reply, “Yeah, but you just have to go around them.

Exactly.

He should know. Perhaps better than most.

car rides, spicy foods and serious conversations


I shared this on Facebook a couple of days ago because, wow, I had to! Daniel’s caregivers at Good Samaritan Hospital’s NICU, my colleagues, know too well how his story began so I had to share with them all…and everyone else. This child of mine, my son, is so amazing. Truly I am one blessed mama!

I love the chauffeuring of my clowns that is part of this juggling act of mine. No really, I do. If only because I get the added bonus of some of the best conversations with them. There is something about the being confined in the mom-car, staring out the window that makes it a safe place to talk about anything…really anything….OMG!…yes, anything and everything. Just the other day there was such a conversation between Daniel and me.

I really like super spicy food, don’t I?

Yes, you do.

I love Sriracha so much…and jalapeños…and lemons…and pesto…and…I just love spicy and sour food so much. Is that weird?

No, I don’t think so. You’re a man with very selective tastes.

Mrs. B. tells me most kids don’t like super spicy or sour foods. But it’s not weird that I do? Really?

Not weird at all.

But other kids don’t like foods like that?

Well, you are not other kids…

I go on to explain just a little about the years he was learning how to eat and his sensory processing issues. Oddly enough, I learned that someone with oral defensiveness like he had as a g-tube fed infant, toddler and preschooler is they learn to need foods with strong tastes and smells. The stronger the taste, the easier it seemed to be for them to put them in their mouth, chew and swallow. Lucky for him his mama loves to serve spicy, savory, tasty food.

The conversation flows through the explanation of how his need for strong tastes and dislike of loud noises and bright lights comes from his extreme premature birth. We talk about his five senses: touch, taste, sight, smell, sound are processed through his brain and how because he was born 4 months too soon, his brain really was not ready to process all the touches, tastes, sights, smells and sounds.

He interrupts me telling me that it was hard for him to be born much too soon but before I can answer he continues telling me that it was good that his Dad and I adopted him because he doesn’t think that his biological parents could love him the way that he is.

Oh if he only knew…maybe he does…even if we have never spoke of this part of his story with him or around him.

Daniel, you know I am pretty certain that your biological mother and father did love you very much before you were born.

Yeah?…

Oh yes. I imagine they were so happy knowing that you were going to be born and were very happy waiting for that day.

But you and Dad adopted me…

Yes we did. Daniel, when you were born you were so, so very tiny and honestly the doctors weren’t even sure that you would live. The doctors told me that they, your bio parents, were so afraid and they didn’t know if they could do what you needed for them to do to help you.

You have to be brave when your baby is tiny, huh?

Oh yes. Yes you do. The mommies and daddies I know at work in the NICU have to be fearlessly brave and strong for their baby in the NICU and after they leave the NICU. And they are.

Like you and Dad?

Yes. Just like that…

Well that’s why you and Dad are my mom and dad.

Yeah?…

Yeah! I’m glad you are my mom and dad!

Oh!

Right?!

Truth be told this is the first serious, lengthy conversation we have had about his adoption. The last time was maybe 3 or 4 years ago when he told me that he had to be born early to meet me, his mommy. Then he asked what was his bio mother’s name. Irina, I answered. He then declared that that was a pretty name and hugged me before he ran off to play. Daniel has always known that he is adopted and that I met him the night he was born as his nurse and while Bill and I had always resolved to be honest about our beginnings as a family, we also knew that it would be a very hard conversation to have. Truly his perception of it all could have gone any way. What we wish for, hope and pray for is that he will always know that he has always, always been cherished, wanted and loved today and every single day of his amazing, miraculous life. Meanwhile I am overwhelmed with the wisdom and the insight of this boy, my son. Oh, and I am thankful opportunity for another mom-car conversation…especially because it was in the car…while I was driving.

adolescence eve


Today, my beautiful boy, you are TWELVE YEARS OLD!!! Of course, being the pre-pubescent child that you are, you are absolutely mortified that I am shouty as I pronounce again, “OH MY GLOB!! YOU ARE TWELVE YEARS OLD!!!” Still you have become accustomed to your mom becoming emotional and teary and nothing but feelings every January 11. You are coming into an age where you are beginning to realize and appreciate just how remarkable each and every birthday of yours is.

That day, twelve years ago, when I met you for the very first time, I was changed forever, for good. I couldn’t possibly imagine what was in store for us all that day I regarded you, your tiny frame that fit perfectly into my hand from head to rump. As a NICU nurse, the NICU nurse who admitted you that early morning I could easily imagine the possible outcome that would be your future as a barely viable micropreemie. Still I could not imagine you breaking down, going over and under and around and through each and every obstacle and barrier laid out before you, a child born four months too soon who scarcely weighed one pound, without me…and your daddy and your sisters…right there by your side.

Still you are twelve today. You are a pre-teen. You are annoyed with your mom’s emotions today. You are an absolutely, completely normal twelve year old boy.

I’m sorry, son. Yes, I’m getting teary all over again.

Deal with it!

Happy, happy birthday my darling, miraculous, most-amazing boy!