Things I wish I could've told myself before I had a baby...

These are particularly applicable to having The Chubs and to my experience as a mother to a child with special needs:

Definitely wake a sleeping baby if said baby will not ever show hunger cues or eat enough to thrive during the day.

Always dispose of a poopy diaper immediately or else the poop may end up in a tiny curious hand.

Let them get messy at meal time no matter what a hassle it is to clean up. It is so much more important for them to feel comfortable with food than to have a clean tray and an empty washer at the end of the meal.

Don't sweat over poor napping. If that's all they need, so be it. As long as they are content in their crib to just play and rest, it's a win-win.

A messy house comes with the territory of motherhood. There will be other lifestages to have perfectly kept house.

Every baby develops at their own pace. The important thing is to value each child for who they are and what they have accomplished. Savor every moment, every stage, and don't look at others for guidance on what your child should or shouldn't be doing.

Trust your instincts. If you think something is off, have it looked into. Everytime I have trusted my gut on something I have been thankful I followed through. Other times I dismissed something I have regretted it in the long run.

There is a difference between worrying about something and being proactive about it. Take a negative emotion and turn it into a positive outcome.

Patience is essential in parenthood. Anyone that lacks it will not make it out with their sanity.

Do not stress out about the things you cannot control. Not only will you become an unhappy person, but it will make your child unhappy as well.

You can read every book on the planet and still none of them will be able to tell you what your child needs. Only you can be the expert on your own child.

Keep the lines of communication open between you and your spouse. If you are frustrated or unhappy about something, let them know. It's better to work it out quickly instead of bottling it up and then exploding later.

When you have a child with special needs:

Nothing is achieved quickly or without effort. Keep pressing onward with diligence and devoting yourself to your child and eventually you, and they, will get there. Do not give up and do not get lazy.

Regression is a part of the process. There will be times you will be sailing by and making huge strides only to find yourself moments later, taking several leaps backward. Do not be discouraged. For every leap backward there will be 2 leaps forward.

Get out of the house and make time to just enjoy your child and be reminded of all the things you love about them. Do not get into the pattern of trapping yourself inside and shutting yourself off from the world.

Make time for yourself. Do not feel guilty if you need time away to rejuvenate so you can be the best you can be for your child.

Counting calories will not make your child eat more. Not counting them will not make them eat less. It is good to be aware of their eating habits so you can report to their doctors regarding their progress but do not become obsessed or let it rule your life.

Listen to the advice of others, but know that unless they have walked in your shoes, they can't fully understand the circumstances.

As "Normal" As it Gets

Part of the slew of testing that all of The Chubs' doctors wanted her to get was genetic testing. It was basically just to rule out any underlying issues why she's small, has been slower to grow, and has had trouble hitting milestones. Granted, her OT and I both already knew the answer to those questions was related to her sensory stuff, but to satisfy the doctors we went through with it.

It started with a renal ultrasound and some x-rays. Then we did an EKG and echo of her heart. All of these things checked out completely normal. The lady at the hospital even rolled her eyes when she looked at the charts. "Genetics is fishing for answers again, huh?". I just nodded and kind of laughed. You could tell she was a little irritated with the department at Children's. "Well they are not going to find answers here!". I wanted to kiss her, but that would be weird.

Then the final thing that I had been dragging my feet about for ages was the blood test. I knew The Chubs would flip out and she did. She puked like 5 times during the blood draw and the nurse was in absolute disgust claiming she had "never seen a child do that before". I suppose she was new because seriously? Kids puke from crying all the time. I mean it's not like EVERY kid does, but a lot of kids, if they get worked up enough, they'll gag or vomit. Anyway, that's beside the point. We made it through (barely) and she even got a toy at the end that she was pretty excited about. It was Christmas time so every patient was getting a toy. Kind of fun.

The results said they would take about 2-4 weeks. About 6 weeks later in typical medical fashion, we finally got a note in the mail (so nice of them to call and ease our minds!), saying that all results were normal. So basically for being a part of THIS family, she's as normal as it gets. It was a huge relief just to know there isn't anything else that could be causing issues. Now if we can tackle this sensory stuff we'll be all set!

Big Steps

For 14 months I have had an immobile child. I know many people would go on and on about how lucky I am and how once they start moving, they never stop and blah blah blah. But seriously, I don't think many people stop to think about the inconvenience of having a child that can not move from one point to another for that long. Especially a child who is extremely social and won't let me out of her sight! It's frustrating for both of us because she wants to be wherever I am, but sometimes when I need to get things done, she just can't be. She also gets frustrated when she sees the cats and can't go after them. It's to the point where a lot of times I have to shove a cat in the basement or let them outside before she comes down to play because I don't want her to flip out and throw a tantrum because she can't go after the cat. I'm pretty sure she just hates everything about the crawling position. She has the strength to crawl, she is good at rocking on her hands and knees and weight shifting her arms, but at the end of the day she doesn't like that she is closer to the ground, when everyone else is up high. I have diligently been doing crawling exercises with her for months now. She is much better in that position than she used to be (read: she doesn't throw a tantrum and thrash around when I put her on all fours) but she is still not a fan. I don't know that she ever will be.

So when she started taking steps with her walker the other day, I was ecstatic. Even if the walker gets used for awhile before the actual walking begins, that is enough for me. The fact that she could start cruising around the house with a walker makes me feel like the end of this immobility will be here soon. It would not completely surprise me if she skipped over crawling and went straight to walking (much to her therapist's dismay). Of course I want her to crawl before she walks. It's good for building up the strength in her arms and teaching kids how to get in and out of positions. HOWEVER, you can't force a child to crawl. If you could, trust me, she would have been crawling months ago. So even if this ends up meaning all of my effort to get her to crawl was in vain, I am just thankful that my child may finally be able to get around ON HER OWN! I do have to say though, my arms are getting pretty buff from all this kid lugging. It's a pretty awesome work out to have an immobile child for over a year, but I'm ready for flabby arms. Bring on the walking!

FAKER!

Lately The Chubs has been really working on her fake cry. Her face looks so pathetic and she musters up a long drawn out whine that is shortly followed by a glance in our direction to see if we're watching. Even today in her crib, she's working on it. I can see the pathetic expression on her face and the effort she is putting into the whine but after each short outburst, her face returns to normal, and then she begins again a few seconds later after a much needed break. No tears, no sniffing, just a long dramatic "ahhhhhhhhhhh" with a few inflections here and there with a scrunched up pouty face. I have to admire her persistence.

She's been using this technique quite a bit lately. Sometimes she can get herself so into the part where she starts to form real tears, but she doesn't yet have the stamina to keep a consistent fuss going. There are usually several breaks in between her outbursts because faking it is hard work!

Even now as I type this, she's finally passed out from sheer exhaustion. She gave it her all, but was defeated. And although she is quite passionate, I don't think she should consider a career in acting.

Sippy and Drippy

The good news here is that we are almost 100% sippy cup these days. Today The Chubs had 3 out of 4 "bottles" from her sippy cup. Tomorrow I plan on transitioning to all sippy cup and getting rid of that ridiculous haberman bottle. Not only has she been doing great with the sippy for her bottles, she has also consistently been drinking several ozs of juice from them a day, during meal times. Remember my miracle blanket burning party? Well I intend to have a haberman burning as well (even though neither time will actual flames be involved - it's more of a freeing mental state).

In less fun news, we had a pipe burst in our basement today. It completely flooded one of the bedrooms down there that is considered the "poker room" or "man cave". We heard water rushing and when The Hubs went down to check on it, there was a few inches of water on the floor. We'll be spending the rest of the night soaking up the floor and ringing out towels. I can't wait. Thankfully we didn't have much in there, so there wasn't a lot of damage. It's mainly just a pain in the butt. I suppose this could've been anticipated since our temps have been hovering in the negative teens the last several days. And thankfully, my husband, being the handy guy he is, was able to fix the pipe, but had to tear out a lot of the drywall. All of that will need to be repaired at some point. You don't realize the value of running water until you have to clean up after a toddler without it!

Where did it go?

Today while playing with The Chubs, I noticed she was bearing down and grunting, and her face was turning red, so I figured she was working on something, which often happens in the late afternoon. After letting her sort things out below, I smelled a poopy diaper so I figured I'd just change her right there on the floor.

I checked her diaper and sure enough there was a pile of goopy poop. Sorry for the detailed description but it is important that you know the consistency for the rest of the story.

So I cleaned her little bum up, still keeping the dirty diaper under her, and then pulled it out like I normally do to wrap it up. When I pulled it out I realized there was no longer a glob of poop in it. I looked around her frantically to make sure it wasn't smeared on the carpet, or hadn't gotten on me somehow, but I couldn't find it anywhere. Finally I actually looked up at Lexi and saw her holding the glob in her hand and mushing it around with her fingers while staring intently at it. I don't know how I missed it, or how I failed to see her grab it, but I took action immediately by wiping her hands vigorously, and then taking her to the sink to wash them. I'm just so glad that it didn't disappear into her mouth.

I'm hijacking this from another blog that I read because it is beautifully written. Although the road to motherhood and the journey thereafter have been difficult, I thank God for the precious gift that he has given me in Lexi. I can only hope that one day in the future He will be gracious enough to entrust another little heart into our care, but if he doesn't, I am thankful for the experience of motherhood, and the chance to love and care for our precious miracle.

"There are women that become mothers without effort, without thought, without patience or loss and though they are good mothers and love their children, I know that I will be better.

I will be better not because of genetics, or money or that I have read more books, but because I have struggled and toiled for this child. I have longed and waited. I have cried and prayed. I have endured and planned over and over again. Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.

I will notice everything about my child. I will take time to watch my child sleep, explore and discover. I will marvel at this miracle every day for the rest of my life. I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed him and that I am not waking to take another temperature, pop another pill, take another shot or cry tears of a broken dream. My dream will be crying for me.

I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child that my friends will not see. Whether I parent a child I actually give birth to or a child that God leads me to, I will not be careless with my love. I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain. I know disillusionment as I have been betrayed by my own body, I have been tried by fire and hell many never face, yet given time, I stood tall. I have prevailed. I have succeeded. I have won.

So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs. I listen. And even though I cannot make it better, I can make it less lonely. I have learned the immerse power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes. I have learned to appreciate life.Yes, I will be a wonderful mother." - Unknown