Tiny Baby

back in New England

I am back in New England after attending a funeral. I was back home in Georgia to bid farewell and honor the life of one of the most amazing women I have ever known. I went without the kid, and while I missed him greatly it was nice to be able to focus my attention on saying goodbye.

Austine Wallis was my best friend's mother. She was, in fact, my second mother. She helped raise me and when I was a stupid adolescent she was the only person in my life who didn't focus on the negative or put me down. Instead, she let me be stupid, and when I was done she taught me how to help myself climb out of the hole I dug. Never once did she look back or comment on how I arrived in that hole (and it was a deep one), instead she just took a look at my current situation and showed me ways to improve it. I would never have graduated from college without her help. I know I wouldn't have gone to graduate school either. She taught me that it is important to look at your past mistakes, learn from them, but there is no use in dwelling on them because that just gets in the way of the work that now needs to be done.

The only way I can think that would truly honor her life is to try and live my life to the fullest, to not get lost in the pettiness of reliving past mistakes, to look forward and just keep trying. I know that I will miss her stalwart watch over me. Knowing that her calm head and creative ideas won't be there when I fall and need advice. I can only keep asking myself, "What would Austine do?"

the dying of the light

When I woke up this morning
I found it hard to believe
the rising sun and birds in song
because this world
should be frantic with grief
raging against this loss
the loss
of such a woman

This woman who grew and thrived
despite isolation and rural roots
who found her way from Appalachia
to New Mexico
to a doctorate in mathematics

This woman who chose to educate
with kindness and love
and each person who came in her grace
was better for knowing her

This woman who could see past all petty things
and into the true heart
who never once gave up on anyone
and made each person feel confident, capable
able to do anything

But the world doesn't seem to notice
the huge hole that is left in her absence
the magnitude of this loss
it just keeps going on
but I sit here and mourn

--
I will be out of town until Tuesady

entirely too busy

We are way to busy with assessments and now doctor appointments this month (and into next month). We just finished up a marathon session at Children's Hospital (1-6:30!) and are also in the middle of an intensive OT-SI assessment. (oh, sorry, occupational therapy and sensory integration) At least the OT has the decency to schedule multiple sessions of an hour each, spread out over a chunk of time. More for me to do, but great for the kid. We don't have all the reports, but early findings are as we expected - both good and bad news. That is life. We also have to go back for eyes and ears - and we are still trying to find the right dentist. Because he was intubated for so long - almost two months - the kiddo has some serious oral aversions. As in, he will not let anyone put anything into his mouth. I am not allowed to brush his teeth - ever. He will try, but if I do it there is screaming until he almost vomits and he has drawn blood more than once. (part of the reason for the OT assessment) So, it looks like we might get in to the specialist at Children's but are waiting to find out if they will take us. Usually they take only children with special needs or severe trauma. The doctors at the infant follow up clinic feel that he qualifies because of his birth trauma. So, we will keep our fingers crossed. But we are busy busy and running all of the place. Hopefully things will settle down soon.

things you don't want to read

while researching fine motor delay and immature hand development...

--The United States is among the most aggressive in treating extremely small preemies, though intensive efforts to save babies before the twenty-four week mark remain quite controversial because of the low survival percentage and very high percentage of severe disability among the survivors.--

Weeks	Weight (lbs/oz)	Weight (gm)	Survival
22-23	less than 1 lb.1oz.	less than 500 gm.	less than 1 %*
24-25	1 lb. 1 oz. - 1 lb. 10 oz.	501-750 gm.	57%
26-17	1 lb. 10 oz. - 2 lbs. 4 oz.	750-1000 gm.	84%
28-29	2 lbs. 4 oz. - 2 lbs, 12 oz.	1001-1250 gm.	93%
30-31	2 lbs, 12 oz. - 3 lbs. 4 oz.	1251-1500 gm.	94%
greater than 32	greater than 3 lbs. 4 oz.	greater than 1500 gm.	greater than 95%
* Most babies at 22-23 weeks are not resuscitated because survival without major disability is so rare.

He is beautiful. He is wonderful. He is amazing. He is none of these statistics or words or worst case scenarios. He is beautiful. He is wonderful. He is amazing....

losing

The art of losing isn't hard to master...

So many things going on. Swirling around me. Too many babies lost or too early. And a woman I think of as a mother, sick, suffering, almost gone. Her daughter, a new mother, struggling, with no time to grieve.

It is almost too much. I just keep going. One foot in front of the other. Just keep going.

hope it gets here in time

Thanks so much for the suggestions and the empathy. I am fine if I get shortchanged, but don't do it to my kid, okay. And what summer is complete with out swimming at the pool?

So. I pulled out the credit card and splurged for express shipping and bought this wetsuit for the kid. I went with the special size for early walkers and small for age toddlers. It is still big for him, but hopefully not too big. My concern is that a wetsuit needs to be tight to keep in the warmth, so if it is too big it might not work. I am also wondering why there are not similar products in the US? Our friends are having the hardest time finding shoes for their daughter, who is a walker, but only wears a size 1. They cannot find shoes that are suitable for walking in that size. And I wonder, we can't be the only parents with kids who are small? Why is this population of kids left out of the huge marketplace that is the US? We have money, we love out kids, in fact I spend quite a bit of money on my kiddo. Why won't you let me spend my money? If I had any head for business I would start one up.

why can't it just be easy?

So. We are taking swimming lessons, the kid with help from me. From the physical therapy standpoint this is an excellent thing to do. From the fun perspective, also an excellent thing to do. The kid is very good gross motor wise and he loves the water. Loves it. Wakes up from his naps saying, "Wa wa, ouschide, a pool!" This means he wants to go play in the water in the tiny pool on our deck. When we bring him in he cries and cries, 'Ouschide! Ouschide!" When we went in the big pool at Beeba's house, he was screaming with excitement. Swimming lessons - all around seem like a great idea. I find a pool where they have a baby class (18 months to 2 years). They heat the water to 85 degrees, the warmest I can find. They don't have an open pool while having lessons. Everything is working out.

We go to our first lesson and the kiddo is so happy. And then 10 minutes into it he starts shivering. His teeth are chattering. He doesn't want to get out. About halfway through the lesson he turns to me and says, "I cold. All done." I talked to the teacher after class. We thought we were well prepared with our long sleeved rash guard shirt and shorts. But, his body fat is pretty much non-existent, so she said a wetsuit would most likely be the thing that would keep him warm. And I have been searching and searching. They have plenty of wetsuits that will fit 2 year olds, but even though he is almost 2 he only weighs 19 pounds. Companies in the UK and Australia make them small enough but by the time they get here - 21 days - swim lessons will be over. I have driven to all the local sports stores. Nope. All the suits are for bigger kids. I have no idea what to do,and I am wondering why taking swimming lessons has to be so hard? When is my kiddo going to catch a break? And I know that life is a big not fair sandwich. I am fine taking a big bite of it myself. It just breaks my heart when it is my kid who gets shortchanged.