Four years later.

I'm sitting at the table with Christian by my side like we've done every day this summer. I drink my coffee and he drinks his water and a little bit of breakfast smoothie. He grunts at me when he's ready for more. He likes his food. And I like my coffee.

This morning with Momma's coffee and our chocolate banana smoothie, chosen by Christian with a "clear yes," is so normal and average. So beautifully normal and average.

This morning is a little different, though. Four years ago today Christian survived. Our little eleven month old boy left our house and this world and sent back a new boy in his place. I look back on that time and wonder how I even survived it. He was full of tubes and scars. He didn't even seem to know who I was. In fact, I remember thinking that exact thought - He doesn't even know who I am.

But over the years the hard became a little less hard and even passed as easy. The sad subsided and the joy arose. Now I don't cry for what we have lost, what Christian has lost. I cry for all we have gained. I cry for that scared, pregnant mom spending the night in a frigid hospital wishing and praying to wake up from a nightmare. I wish I could tell her it will be okay. He will know you again. He will smile again. Just hold on tight.

He is such a gift. I can't even begin to articulate my feelings about this. There is a clarity that comes with living on gifted time. It's almost like a secret to life that is so excruciatingly beautiful but you don't get to experience it without feeling immense pain and heartache. It's a trade off.

If I could talk to the me four years ago I would tell her to hold her baby. Really hold him for the baby that he is. I remember reading advice about parenting children with special needs and one thing that always stuck out was the advice to enjoy my child. At the time I thought - Enjoy my child?! Enjoy what?! His constant crying? His laying there doing nothing? How do I enjoy this?!

Now I look back at these pictures of his babyhood and just look at him. I want to hold that little baby with his purple trache speaking valve right now!

Over the last four years Christian wasn't the only one who had to learn new things.

I had to learn, too. I had to learn that his "doing things" would look very different than any other child, ever. And I needed to learn how to recognize that, rejoice in it, and speak his language so I could celebrate him for the boy that he is. I would have told the me four years ago not to get hung up on fixing him, but to focus on making him happy. I would have told the me four years ago, but the me four years ago wouldn't have listened then. I wanted to fix him.

But I learned. He learned to breath and to sleep and to make sounds. I learned to accept him for the perfect baby that he is.

I learned to trust my instincts and that he is still my son and I am still his mother. I don't need permission to give him Teddy Grahams in his blend. I don't need permission to rough house with him. No medical professional has ever said anything to me about my choice but other parents have questioned me. Did someone tell you this was alright? How did you know you could give that to him? Because I'm his mother. And I say it's okay.

I learned that my son isn't forever a medical patient and he certainly isn't a medical patient in this house. He's a kid. His medical stuff is just the way he is parented. I give Lola Cheerios with honey for breakfast. I give Christian a blend through his tube. It's parenting, not a medical procedure. He doesn't need a doctor or a nurse for that. Same parenting, different look.

Christian has been our greatest teacher. When we went through the hardest parts, with his non-stop crying for hours, I would wonder to God - Why did you spare him? To torture him? Will he ever be happy?

I think I know why Christian made it. He teaches us every day. He teaches us about this big, great love that's painful and stunning all at once. He teaches us patience and acceptance and he humbles us. He teaches us forgiveness. He teaches us strength and the will to not only survive but to thrive. He teaches us to appreciate everything and take nothing for granted. Even a little half smile.

He teaches about choosing happiness. He teaches us about not feeling sorry for ourselves. He teaches us perseverance. Because if Christian can be content in living his life every day the way it is, certainly I can, too.

I love that boy for everything he is. I don't think about the future as much as I probably should. But I think about now and what we're doing today. Finally registering him for kindergarten. His fifth birthday coming up. I'm focusing on now.

Christian is still showing us miracles all the time. Just when we think he's done, he throws us another one.

But my greatest joy four years later? Christian likes dinosaurs and Thomas. He likes chocolate peanut butter smoothies. He knows his family. He knows his Momma.

And, I finally believe that Christian is happy.

"He is still going to be your perfect baby."

I started the day going through the motions of Stay-At-Home-Mom-Land.

There was no more creamer. Or milk. So I put Cool Whip in my coffee. Yes, I said Cool Whip. Don't judge me.

I wore yoga pants.

It was grand.

And then just like any other morning I opened up my lap top. I noticed a YouTube video that had been shared a few times by other friends and I hadn't yet opened it. I decided to open it this morning with my Cool Whip coffee in hand.

I heard the pretty singing and saw the faces of parents who have children with special needs. They held up words.  They were powerful words. Words about hope. Words that served as advice on diagnosis day.

I guess what struck me was that this wasn't a sad video. This wasn't a woe-is-me video. This was a here we are and this is what you should know going forward video.

But then I saw a friend of mine. She was holding up words.

They read...

"He is still going to be your perfect baby."

I sobbed. Like, ugly cry sobbed. And when I tried to retell it to Manny later on, I almost couldn't get through the sentence.

I have so many thoughts and feelings about that sentence but I'll elaborate later. For now I can sum it up in three words.

He totally is.

I gave Christian a bath today. Every time I give him a bath, if we're not a hurry, I take his right hand and make him splash the water. Then I ask him to splash. He never does. I always chalk it up to him being so relaxed in one of his favorite places - a warm bath.

But today I splashed his right hand while I had him sitting up in the bath. Then, like always, I asked him to splash. I said, "Now, you do it." And do you know his little right hand started to buzz. He was trying to raise it out of the bath water and open his hand. He did it several times after I asked him if he wanted to splash. I had waited for him to do this for years now. YEARS. At first I thought maybe I willed him to do it. But he was ready to try and splash on his own.

So then Lola got in the water with him and I told him we should splash her. So I had both my feet in the tub while sitting on the edge, holding Christian up in the water. I grabbed both his arms and helped him splash his sister. He had the biggest smile! But then Lola started splashing back. Normally I would tell her to stop because her splashes drench the bathroom but she really wasn't hurting him so I let her continue. We kept on splashing back. He just smiled and smiled, I was laughing, and Lola was giggling.

I looked down at my now soaked yoga pants and said, "You guys got water on me!"

To that Lola responded while giggling, "Sorry we got you wet, Mom!"

Do you know that I wanted to cry when she said that? Sorry, WE got you wet, Mom! I don't really know how to articulate my feelings about it. It was all so normal and perfect. They, as brother and sister, were playing and got Mom's yoga pants all wet. It was both so mundane and so extraordinary at the same time.

I highly suggest you watch this video. And if you do it with a cup of Cool Whip coffee I promise not to judge you.

The Stomping Sister

We have been enjoying summer and trying to stay out of the heat! Christian especially likes to swim at Gramma and Grampa's pool because it's so warm. He loves the warmth and cold is kryptonite. 

Lola found some slime in the dollar spot at Target. It was all the rage in our house last week.

Of course, Lola is "helping."

Lola is always helping with Christian and it's always funny to watch. I'm glad she's so close to Christian and feels so strongly about him. She wants to help feed him, she gets excited when he smiles, she's one of his biggest fans. 

She knows he's special. I could always tell she could sense it even as a baby. But now she understands. I've made a joke about Christian running and messing up her toys and she quickly corrected me with, "Christian can't walk!" as if I were just being ridiculous. So I told her maybe he did it in his dreams and she totally bought it. 

I have been noticing that she has been a little more daring and less careful with him. The other day I was getting Christian ready for a bath and had him laying down on a towel on the floor. As I was gathering his clothes I could hear Lola singing and talking and stomping. I peaked around the corner and found Lola stomping around Christian on the floor. She had a foot raised and was slowly lowering it down to stomp in between his legs. Like, stomp on him!

I seriously freaked. I yelled, "What are you doing?! Don't do that!" 

I couldn't believe she was going to stomp on her brother. She was so scared she ran to her bed. I made her apologize and everything but I've been thinking about it for the last few days. Especially yesterday when she hit Christian with one of her dolls on purpose. 

I have two thoughts about this.

1. She knows better! She knows she has to be more careful. And we should be more careful with Christian. He's kind of breakable. We don't kick or stomp or hit Christian. Ever!

and 

2. Isn't this how brothers and sisters act, though? I don't want her to have a complex. I mean, this is our "normal." And I don't want her life and relationship with him to be "careful." I want it to be natural for her. Should I be allowing her to rough play with him? Is this instinctual to be mean to your brother, regardless of disability? Shouldn't I be happy she feels he is normal enough to take it? She treats him like he is normal. Even Christian can't escape Lola's wrath.

These are the questions I ask myself because I don't know how to apply a normal brother-sister relationship to them. I guess I don't really need to apply it because they're redefining it. 

But no stomping on your brother.

And, for the record, Christian doesn't make a peep when she's hitting him with her doll or stomping around him. So she hasn't hurt him yet. And that's saying something because he is the biggest cry baby!

Oh, and I finally sat down to fill out the paperwork for Christian's kindergarten class. I've been putting this off because of the amount of paperwork I have to fill out. I'm not one to get sad and weepy about filling out the blank lines awaiting answers about my child's development. I actually think it's kind of funny. 

Wanna know if my kid has any social or developmental concerns? You got some time? Wanna go get a drink? This is going to be long.

The developmental milestone checklists are a big, fat goose egg. But the medical portions? I could go on and on. Paragraphs of diagnoses.

Read that carefully. 

But at least it's getting done.

We're also closing in on Christian's other birthday. The day he came back to us. I've got some thoughts so stick around.

Summer Time and Frazier Water Protocol

I am loving summer time!

And we've kept ourselves busy doing summery things like swimming! Christian loves warm water. He just melts right into it. Our pool is a little cold yet but Gramma and Grampa's pool is over 90 degrees! Yesterday Christian went swimming and Gramma brought him out of the pool to lay him down. He started yelling and carrying on so she asked him if he wanted to go back in. He responded with his voice, she brought him back in and never heard another peep out of him!

I am loving that he is really, truly communicating with his voice in response to questions. This kid just blows me away! And I love when he smells like sunscreen and chlorine and he's tired from an afternoon swim. It's so summer vacation.

I've also made it a goal that Christian get in his stander every single day for an hour. We should be doing this regularly because it helps keep his bones strong but with running around and Christian's early bed time, most days we were running out of time. But now that we are home enjoying not having anywhere to be, he has been in his stander almost every day.

We're also doing something new! We've always given Christian tastes when he's up for it and recently he has really liked tasting french fries. So we brought some french fries to his speech therapy last week. He showed his speech therapist that he would taste and swallow but didn't want to hold the french fry. So she got an orange Popsicle out and all of the sudden, he was interested in holding the Popsicle. He exercised his pattern of pushing it away first and then swinging it back around, with help, toward his mouth. And he even brought his tongue forward to his lips to taste it. 

After seeing his pattern and his ability to swallow but his mouth's inability to organize, his speech therapist thought he would be a good candidate for Frazier Water Protocol. You can read more about it here.

The idea is that by introducing water a few times a day by mouth, we're working that swallowing muscle. The thing is that Christian doesn't vomit anymore (yay!). I know this sounds gross but when he was vomiting all the time, he was working his swallow muscle constantly and I really think it helped him learn to protect his airway. But now he's not vomiting. Which is great! But if he doesn't use those muscles regularly he'll loose them. This program will help him exercise that muscle in a functional way while greatly reducing the possibility of future aspiration pneumonia. Christian has never had a pneumonia and we'd like to keep it that way.

We're also cleaning his mouth several times a day along with offering about 3 mL of water by syringe. This keeps his mouth hydrated, reduces bacteria, and provides overall better oral care and hygiene.

After just two days of following the protocol I saw a huge difference in his mouth. This program couldn't have come at a better time because I was starting to feel like his dry mouth was getting out of control. And remember when I mentioned he was vocally responding? Well, when I've been giving him his water, he starts vocalizing. I tell him if he wants more he has to tell me with his voice. AND HE DOES IT! I have to get this on video. Like I said, this kid blows me away!

So we're having a pretty awesome summer so far and I've even started thinking about a certain little boy who's turning five pretty soon and how we'll be celebrating. This is a big one, folks!

Happy summering!

No preschool graduation ceremony? Excuse me while I whine about it.

It's been a whole week that Christian has been out of school.

It's been a whole week since he GRADUATED preschool.

I am emphasizing the word GRADUATED because I've been seeing and hearing about all these cute little cap and gown ceremonies happening all over the place for little girls and boys - special needs and non special needs. All different states and cities, too. 

At first I was slightly annoyed because Christian's preschool didn't really acknowledge any kind of graduation or promotion to kindergarten. At least nothing that I knew of.

[I know. Big deal, right?]

But after realizing a lot of those preschool kids won't be returning to that school, Christian included, and after seeing all kinds of acknowledgement of the importance of a graduating from preschool, ESPECIALLY from a special needs preschool class, I was a little more than slightly annoyed.

Is this going to make or break Christian? No.

Is this really going to ruin our lives? No.

It just sucks! 

I wish there had been a graduation! Because those kids, MY KID, deserves a graduation!

Okay, yes, I have a thing for celebration. And I'm not blaming anyone or discounting his entire preschool experience. Not at all. 

I'm just being a whiny mom. And I'm not that mad. I'm mad in the Man, that sucks! fashion, rather than the Someone needs to pay! fashion.

But this is the thing. He was there for two years. TWO YEARS. His very first two years of school ever! And he won't be going back to that school again. He's going to a new school. I know a lot of parents are thinking, "What's the big deal? They'll have other, more important graduations." How many graduations will Christian have? And what will they look like? I don't know. But I felt like preschool deserved one. That's all.

My mom said, "Oh, well. He'll get a kindergarten graduation." 

Probably. But it's not the same.

Reminder: I'm just whining. No offense to anyone, his teacher, the principal, or whoever made the decision not to commemorate the milestone of preschool graduation.

I'm not dwelling. Just living vicariously through other Momma friends of mine whose children had miniature preschool graduations. 

We're all proud of you, Christian! And for your next opportunity to graduate from something, I'm going to make a big, stinkin' deal out of it!

[End whining.]

#stud

Last Day of Preschool

It's the eve of Christian's last day of preschool and I'm baking.

It's for the teachers and the aids. I have no idea what's an appropriate gift for someone who's cared and nurtured your child for almost two years now. So she gets cookies? It's all I got. And it's not just the teacher, Christian had a team of equally important people who had faith and belief in him every day. People who loved on him, talked to him, cared about him, and got excited for him when he did something new.

So everyone is getting sweets with some kind of chocolatey influence. Because that's what I do for people I appreciate. I bake. And just like the very first IEP meeting where I baked for everyone and it didn't quite come out right, it's happening again. Eh, full circle, right?

We went to the zoo on Saturday for end of the year preschool fun. Some of Christian's classmates were there and so was his teacher and an aid of his. Some of the kids came over to say hello and then they were off to feed the giraffe and to see the elephants. I wasn't sure if everyone was sticking together but it was hot and a little chaotic with all the little bodies so we went on our way to see what we wanted to see. And when I say "we" I mean Lola.

It was pretty representative of this point of transition for Christian. We've been in this safe, little bubble - his preschool class. Where everyone loves him. But outside of the class, those kids want to run and play. And Christian can't exactly do that on his own. So we make our own way.

That's no different than the safe bubble of our home and our family. It's business as usual here but as soon as we step outside we're reminded that things are different. And we'll need to make our own way.

But it has been a beautiful two years of preschool. We started out thinking Christian wouldn't be able to handle typical kids yelling and bouncing all over him. But now he loves it. He really loves being around other kids. No big deal if they're banging toys around or yelling hello in his face. He is totally down with it.

I think Christian is more okay with bursting out of the bubble than we are. And who says he can't run and play?

They Made Me Momma.

It's Mother's Day!

I became a mother almost fifteen years ago. I can't even believe I will have a fifteen year old.

But here it is...the first picture of me as a Momma, circa 1998.

Isaac Gabriel initiated me into motherhood. He is my first and I didn't realize he was only just the beginning of what would prepare me for later. I was driven because of him. He was such a chill kid. He wasn't the kid that gets into everything, screams in the store, throws tantrums. He was always laid back and down for anything. He was the easiest little boy. I would pay for that later with Lola.

Christian Andres was 9 pounds at 39 weeks. When this picture was taken I didn't like it. I thought I looked fat and I had no makeup on. Christian was probably only a few days old here. But now? That's one of my favorite pictures. Big boobs, double chin, no makeup. But it's just me and just him. I love it.

Christian has shown me what it is to love a child so much it literally hurts. He has been my greatest teacher showing me a side of motherhood I was blind to before him.

And then there's "little" Lola. "Little" Lola Magdalene has a giant personality. She is crazy, loud sunlight. She brought joy to us when we needed it most. And I don't have a single picture of me holding her in her first days. Chalk it up to me not having a smart phone at the time so I couldn't take a hundred mommy-baby selfies added with having a toddler with severe special needs and a teenager. 

Anywho, remember me mentioning Gabe being so easy and relaxed? Lola makes up for all that. She is constant energy, exploration, loud noises, and she's so cute I can't even stand it most days.

These descriptions are merely snippets of all they really are. But they made me. They're the best thing I've ever done and the best thing I will ever do.

HAPPY MOTHER'S DAY! 

Crossposting from Momma Candy.