Tiny Baby

maybe i am coming down with something

I have two half finished posts, one about early intervention and one about no matter how small (a dvd we are on), but I woke up from our afternoon nap hot and grumpy. And my throat hurts. Did I mention grumpy? Because I am scaring myself with the grumpy. Maybe we will have ice cream for dinner and I can finish the posts and then, maybe, I won't feel so grumpy. I will still be hot though. Why don't they put air conditioning in houses in New England? Why, people why?

Here, just look at this and ignore me for the moment. There are always more pictures at flickr.

exhausted and sandy

It was a good day. I am sitting here very tired, very sandy, and slightly sun burnt. My good friend came in for CT to make me go out and have some fun. We too the kiddos to the beach and, man, it was fun. I am such and indoor girl, but my kid is made for outside. He never wants to leave. In fact leaving the outside results in a full on crying and screaming episode. "Oooooooooot sigh Oooooot sigh Ooooooot sigh no no no no no no Ooooooot sigh!" (He doesn't have many words, but the ones he has are all action for outside oriented - go, up, down, ball, car, no, outside)

The day was beautiful, sunny and hot. The beach was rocky. Nothing better for the kid than rocks and lot of them. The only thing he loves more is water. The ocean was freezing, but he wouldn't get out of the water. He was shivering, shaking, turning slightly blue, but wouldn't get out. I carried him out, but it was not his choice. Luckily the rocks and the water made him tired so he had an amazing nap on the beach. We followed it up with huge amounts of fried foodstuffs at Woodman's. The kids crashed on the car ride home. I am downloading over 300 pictures as I type this. I am feeling drunk for the sun and the air and the good time. But I am feeling more centered and able to tackle more things. I am feeling grateful, for my friend for making me have some fun, for my kid for making me an outdoor girl, for everyone who supports me and my little family both inside and outside the computer.

we are all in it together

This mothering thing is hard. It is the hardest thing I have ever done. And the thing is, we are all in it together. Sometimes it doesn't feel like it. Sometimes you get strangers walking up to you asking you how many words your kid can say because their kid can say, "Starbucks!"  This didn't happen to me, but to another mom I know, and it made her question herself and her parenting. And all I can think is that I want to shout, "Hey people, we are all in this together!"

Pain, worry, fear. They are all equalizers. There is no way to measure pain. Each person's pain is their own personal hell. Each parent's worry and fear keeps them up at night. It doesn't matter if their child is full-term, preemie, newborn or in college. The fear is real. There is no way to measure or compare. We are all in it together.

When we were first in the NICU, I allowed myself to play the pain game. I would look at families of babies bigger and stronger than mine and feel resentment. They have nothing to worry about; they have no idea what it is like to have a one pound baby. But as time went on, I realized that you just can't play that game. The pain for those families was just as real and just as great as my pain. Life is messy and hard and painful. That is just how it is; it is this way for everyone. What I can do is acknowledge that others pain is valid, it is real, it deserves respect.

So for the women with babies in the NICU, who are just waiting for them to come home. I send you my love.

For the women who don't know how they can get it together enough for one more specialist to tell them what is wrong with their child. I send you my love.

For the women on bedrest, who are waiting and hoping. I send you my love.

For the women who are waiting for a referral, too long for a referral, so that they can go and meet their babies. I send you my love.

For the women with lupus, whose joints ache, and who still reach down and pick up their crying babies. I send you my love.

For the women who are aching and trying and still don't have a child of their own. I send you my love.

For the women who have to work and whose hearts break a little each day when they leave their children with someone else. I send you my love.

For the women who are raising children alone, who don't know how to get it all done, who feel guilty for turning on the television just so they can take a shower. I send you my love.

For the women who are watching their adolescents endure grief, loss and pain and feel they can do nothing to help. I send you my love.

For the women who are helping their own mothers through chronic and terminal illness. I send you my love.

For the women who seem to have it all, but are crippled by depression and loneliness. I send you my love.

For the women who endure snide comments at the grocery store because they are using food stamps, who don't know where the next meal is coming from. I send you my love.

For the women who are raising children alone because their babies fathers are serving in Iraq. I send you my love.

For the women who have endured labor only to find a stillborn child. I send you my love.

For  the women who are packing boxes without knowing where they will be living. I send you my love.

For  the women, everywhere, who worry, who are afraid, who try as hard as they can each and everyday. I send you my love.

I am sure I have left people out. You should think of them and send them your love. Because we are all in it together.

one of those moments (days?) (years?)

I am having one of those moments where even the smallest task feels insurmountable. Where I have no idea how to get anything accomplished. And it all just seems too much, too overwhelming, and beyond my abilities. I cannot begin to wrap my brain around how to get us dressed and out of the house, let alone to the store to buy food. And then I start thinking about the cost, of the gas, of the food, of the cable, of the phone, of everything. And I look at our dwindling bank account and I have no idea how we are going to survive. How can I buy chicken when I don't know how we will pay our oil bill. And it isn't just our oil bill we owe for this month, which hasn't been paid, it is oil for next winter. And I have no idea how it is all going to be okay. Then I think that I have to get a job. But I can't get a job because the kid can't go to daycare. And my work doesn't pay much, so having a nanny doesn't work either because then we end up with only $100 left a month and that doesn't factor in wear and tear on the car or gas. And then I think about how unsafe my care is and that we need a new one. Can you really dive a kid around in a car with a cracked engine mount? And we can't afford to fix it, but we can't afford a new car. And it just spirals until I am paralyzed. I am completely paralyzed.

we went to the farm

Yesterday we went to the community farms with Terri, our developmental specialist from early intervention. We had so much fun. The kid wasn't too sure about the animals, but wanted to touch them so much. He would often use my hand to reach out and touch them. The exception to this was in the bunny house. Oh how he loved the bunnies. He was fascinated by the huge tractors and, by far, his most favorite thing was the mud. Words are not adequate to describe it, so go see the slide show.

things i have learned

Things I have learned about mayonnaise:

-- if a toddler puts a lot of it up his nose, it will come out in spurts throughout the entire day, usually accompanied with screaming

-- if a toddler puts it in his eye, it will result in screaming

-- if a toddler puts it in his ears, it is almost impossible to get out, and later his ears will smell funny

-- don't give toddlers mayonnaise as a dip for their veggie sticks, stick to the Trader Joe's greek yogurt.

while it might seem like a good idea

While it might seem like a good idea to just feed the baby an entire piece of cake for lunch, because you won't have to fix something, and then fix something else, and you know he will eat it and you won't have to fight about it, and man, does it have a lot of fat in it. Well, it isn't a good idea. The rest of your day and your entire night will suck completely. So, now you know.

thank you, mama!

so far away from noraml that it is kinda funny

So, I was reading another blog and the post was about getting a toddler to gain weight. I was so excited to be a parent who actually kind of knew about something related to raising a child. I posted about all the strategies that our nutritionist has given us in our war against failure to thrive. I made the mistake of going back to check up on the other comments. Why was that a mistake, you might ask. Well, because I was able to see how far removed from normal our situation is. No other parents add olive oil to their children's food. In fact some of them thought it was, well I will say it this way, they thought it a bit odd. And it really just struck me that our experience has been so far removed from the realm of normal that I might not have a grasp of what normal might be. I am so glad to have other preemie and EI moms as friends - even if they are just my friends in the computer. I am very grateful to have my online mom's forum who never ever mention how not normal I am. Maybe we will hold off on joining the mommy and me group at the library for the moment.

run over by a truck

That was how I felt after I delivered my son. And it is how I feel again, after watching the trailer for little man. Because what she says in that trailer is exactly what happened to us. 15% chance of survival. He needs to live through the first 24 hours. He may never walk or see or hear. Do you want to let him go?

I knew I disassociated in the NICU to survive, but I thought the year of therapy would have helped more than this. I am a mess. I can't stop crying and hugging my kid (who just wants to walk around - oh my god - walk around - I can't believe he walks around). Wow. I can't believe how much I still tell myself that what happened was okay, normal, we are all fine. Because seriously, it was huge and not normal and we are still recovering.