perception

Daniel age 9 weeks/31 weeks adjusted age

“When I was born I was teeny-tiny, tiny. I was REALLY tiny. Even tinier than Baby Hazel was. I lived in the hospital. My mom says that even though I was soo very tiny, I was the strongest baby ever. And now I am not tiny at all. I am big!”

I am quite impressed with Daniel’s perception of his beginnings. As he recalls and shares with others his perception of the beginning of his life it is easy to see how impressed he is with it. Although I do believe that sick, premature infants do have memory of the NICU experience on a subconscious and primitive level, I doubt he can recall how tiny yet how strong he was 7½ years ago. But it is clear that he is beginning to understand how scary and amazing it all was.

And again I find myself in awe over just how amazing this child of mine is.

banished doubts

So you know those decisions you make where deep in the dark of the night you find yourself perhaps having second thoughts? I’d be lying if I didn’t admit to such thoughts about our decision to hold Daniel back to repeat the first grade. Let’s just say as Daniel tells us it is time to do his homework and sits down and confidently goes for it, those thoughts are banished. Just like every other developmental milestone he has met it, I swear I can see the light bulb turn on just above his beautiful head.

True, the school year has just begun but to see the eagerness he has as he works on his math (naturally), his writing, his spelling and his reading I know we made the right choice to hold him back and repeat first grade again. He is a confident, eager learner rather than distracted and just a little bit frustrated and demoralized. Let’s face it, he is smart enough to know he wasn’t getting this last year. But this academic year, so far, he does get it.

Trust me. This is one decision which I have no dark of the night waking up in a cold sweat regrets, no second thoughts, no doubts.

mindfully sad

News circulating tonight in the mom-blogsphere and twitter-land is sad. Beautiful, miraculous Maddie Spohr passed away suddenly today. Following her family’s account over at The Spohrs Are Multiplying I couldn’t help but be enchanted with her amazing eyes (second only to my grand daughter, Hazel’s) and her delightful smile. I identified completely with the trials, tribulations and amazing blessings of life with their preemie because we are living out own life with an amazing preemie. Tonight my heart is sad, so very sad for her family. Please stop by their blog and discover Maddie, if you haven’t already and definitely find it in your heart to make a donation in her memory to the March of Dimes. Not a day goes by where most families of preemies like Maddie and Daniel are reminded just how miraculous they are and how they still are so vulnerable even long after they leave the NICU to “live happily ever after”. Perhaps someday happily ever after will be a reality for micro-preemies and preemies like these rather than a wish, a prayer or a miracle.

he’ll likely be really mad at me for this…

…in say about five or ten years. I’ll deal with it then.

Potty training Daniel has been a long, arduous journey. I had no doubt that it would be after all he is a boy and I have heard way too many stories from moms of boys. They didn’t worry me too much though. I just knew it might be more challenging with him. Then there was the whole ex 24 weeker with developmental delays and SPD issues thing. Then I definitely came to terms with the truth that it would be challenging. I was okay with that and was prepared.

Actually I had no clue…

Some days it was challenging, some days it was frustrating, some days were triumphant and some days we all cried. Eventually he got it…sort of, kind of. He kept himself dry and answered his nature call all on his own. But that pooping in the potty thing, well, that proved to be an even bigger challenge. I got it, really. I mean one of his sisters had a hard time accomplishing that milestone too. It was a scary thing it seemed for her andf it seemed to be the same for him too.

We tried reasoning.

Rewards.

Consequences.

Begging.

Pleading.

More promises.

More consequences.

Even a little peer pressure.

And at one point we pretty much gave up.

It could have been worse. I mean, I have dealt with impaction back in nursing school. Thank goodness he was regular because I just don’t think I would have the strength for that.

Then finally, like pretty much everything else in his life, it all clicked and it clicked according to HIS timetable, not ours.

He poops in the potty all on his own all the time now and he is quite proud of that fact, as he should be. “Take a picture, Mom!”, he quipped tonight. I compromised and took a picture of him showing us all where poop should go…in the potty!

Buh-bye pull-ups day and night forever!

you’re still here

You were there seven years ago. You were there for him when he scarcely weighed a pound. Seven years ago today you were covering him and protecting him as he recovered from open heart surgery. He was so tiny you practically covered his entire body. You, with another beanie-baby lion provided boundaries in his new womb, keeping him from pulling the tubes and wires that sustained him. You stayed with him throughout his entire stay in the NICU. You were there. You were always there.

Seven years later, he found you this morning while picking out his clothes for the day. You were there in his top dresser drawer under his socks. There you were, like you always are. He brought you to me telling me that he found his lion, his friend, telling me that you were still here.

You are.

You’re still here watching him grow.

January 21st’s happy ending

Like so many bloggers/photographers/scrapbook experts and addicts out there, I am actively participating in Project 365, a photo each day in my life. I already take a number of pictures everyday but the challenge is to select just one that depicts life around me this year. Today’s picture certainly isn’t worthy of great artistic or creative acclaim but there clearly was no other choice.

Today was Daniel’s 7 year well child exam. He weighed in at 35 pounds, yes THIRTY-FIVE POUNDS! He stands 3 feet 5 inches tall as well. THREE-FEET-FIVE-INCHES!! He gained 5 pounds and grew 2 inches in just 4 months and has outgrown the boys size 4 jeans I bought him at the beginning of the school year. My little man is growing and forgive my over the top reaction, but I am so freaking excited and thrilled. Now don’t come back here and rain on my parade sharing how this 7 year old is 60 pounds or 4 feet 11 inches tall or that 5 year old is twice Daniel’s size. I don’t really care. Seriously, I am so thrilled with his growth spurt…yes, for a kid like Daniel, this is a growth spurt.

But that’s not all. We’re not through.

The pediatrician did the thorough head to toe and reviewed Daniel’s health history this past year. With the exception of evaluating a mole on his back this past Fall, she hasn’t seen him all year and why is that, she asked? I shrug and tell her hasn’t been sick. He hasn’t. His nebulizer sits unused in the pantry next to the breathing meds he has had no need for in over 6 months. There have been no colds, flus, nothing. Dr. B shakes Daniel’s hand and tells him he is an amazing, miracle man. Daniel replies with his usual affirmative “Yup”.

Doc and I talk a little more about his growth and development and any concerns I might have. I still have some but all in all I am more than pleased. My boy is happy and healthy and that is a good thing. We end the visit talking a little NICU-related shop that ends with Dr. B smiling broadly, giving Daniel’s hair a playful rough and declaring, “Don’t you just love a happy ending?”

I grin back at the two of them and agree, “I do!”

Of course Dr. B and I both know Daniel has miles and miles to go before his happy ending is fully realized. His challenges in learning and growing still remain. Still to take a child who started life out with only around a 50% chance of survival, a 38% chance of profound neurodevelopmental impairment and around a 22% chance of moderate to severe neurodevelopmental impairment, he is pretty darn amazing…really! Given the fact that there was no way to determine his eventual outcome 7 years ago I will glady accept the challenges he does live with today and I will continue to face them head on with him.

Dear Daniel, you are truly a fortunate son. I celebrate you. I celebrate all the talented, fearless caregivers you have had throughout the years. I celebrate the multitude of people who have prayed for you, cheered you on and celebrated you. Today is a happy ending kind of day and I celebrate that too. Tomorrow, we will be working on your homework and likely struggling with it too. Or perhaps we will be fighting with food again. But as you have proven thus far, slow and steady does win the race.

ciphering king

Arithmetic is being able to count up to twenty without taking off your shoes.
- Mickey Mouse

Seriously, the reading and writing thing is absolutely boring as far as my little man is concerned. But give him math homework…lots of math homework with word problems that make the student stress over how many apples Susie has when a train is traveling east at 70 mph with 56 passengers on board and algebraic thinking (first-freakin’ grade!) and he is all over it.

This is one of those many nature versus nurture moments here under the Big Top. Frankly, I am excited and curious as it continues to play out. And then again I have to consider the fact that my ex 24 weeker boy is loving math and is the math whiz of his classes (special ed and mainstream) and well, I have to do the happy Snoopy dance.

Now if we could only get this it-is-okay-to-poop-in-the-potty-all-the-time thing down. Then we will be absolutely golden.

2020

Ladies and Gentlemen, may I present to you the Class of 2020!

It’s a great day for a graduation!

So what if it is only kindergarten. It is a big, fat hairy deal here under the Big Top. Our amazing little man who once was no bigger than my hand is completing kindergarten today.

So what if he is the smallest one in the class. He is absolutely amazing and the most awesome kid in the class!

I’m not the only one who thinks so either.

Congratulations to Daniel and the rest of the Class of 2020. You are guys are now ready for life and the big, bad world!

All I Ever Really Needed to Know I Learned in Kindergarten

Most of what I really nned to know about how to live and what to do and how to be I learned in kindergarten.

Wisdom was not at the top of the graduate school mountain, but there in the sandbox of nursery school.

These are the things I learned: Share everything. Play fair. Don’t hit anyone. Wash your hands before you eat. Flush.

Warm cookies and cold milk are good for you. Live a balanced life. Learn some and think some and draw some and paint and sing and dance and play and work every day some.

Take a nap every afternoon. When you go out into the world, watch for traffic, hold hands and stick together.

Be aware of wonder. Remember the little seeds in the plastic cup. The roots go down and the plant goes up and nobody really knows how or why, but we are all like that.

Goldfish and hamsters and white mice and even the little seed in the plastic cup- they all die. So do we.

And then remember the book about Dick and Jane and the first word you learned, the biggest word of all: LOOK. Everything you need to know is in there somewhere. The Golden Rule and love and basic sanitation. Ecology and politics and sane living.

Copyright. All Rights Reserved by Robert Fulgham 1987

now we are six

:::::sigh::::::

It only seems like yesterday that we first met.

Give me a moment or two please. I mean, c’mon, my baby boy is growing up!

Isn’t he absolutely amazing?

Anyone have a kleenex?