"Not flesh of my flesh, Nor bone of my bone, But still miraculously my own. Never forget for a single minute,
You didn't grow under my heart - but in it"

Sunday, October 30, 2011

Quick Request

Woke up this morning to this

Doesnt seem to phase him

Please pray for him too. He has a lot of secretions and a slight cough. If he gets bad I dont want to be stuck in an unfamiliar hospital for goodness knows how long. Also AJ just woke up coughing. Prayers would be appreciated.

Be blessed

Saturday, October 29, 2011

What we take for granted

Tonight while on vacation (I'll post vaca pics soon) I looked over at Noah and Paul handed him a donut. He took the donut put it up to his mouth took a bite and began chewing. I was fascinated and we all were celebrating. As I was watching this unfold I thanked God for having a child that couldnt eat. I know that y'all must think I have lost my mind! Maybe I have. When you have a child who develops typically you rarely notice the same things. At least that is how it was for us. You hand your almost 2yr old kid a mcnugget apple slice and they pick it up put it to their mouths and eat it. No big hurray's or hand claps or way to go's. But for us, for Noah, seeing something like this is magical.

I love that when he does little simple tasks it gets celebrated. I love that when I see him do something like clap, crawl, walk, mimic a word, eat, stand on his toes that we all freak out. I know how hard those simple things are for him and how he was never suppose to even survive let alone do anything.

Now heres where y'all are really gonna think I lost my mind. I think that everyone should have a special needs child. No matter what you say if you have a typical child you have not experienced the joy that the little things bring. You can say you do. First time moms and dads probably say "I celebrate everything! I get what your saying it is awesome when they do that." Seriously though you dont get it. You dragon moms and moms of special kids you get it. I bet y'all are sitting there nodding your head and thinking of a time your child did something "typical" and I bet you have a big ole smile on your face right now.

Tonight will forever be etched into my brain. The night my son picked up a donut put it to his mouth and took a bite. Thank you Jesus for giving me such an awesome child. Thank you for the miracle of eating.

Be blessed

Tuesday, October 25, 2011

Breaking Down Stereotypes

Today I decided I needed a day out. I got the kids ready and off we went to Children's Place. The kids were just awesome while we were out. I am so grateful for good kids. I decided we would head over to the second hand store to see if they had anything for the kids.

Got all 5 kids out. 2 in the stroller 3 walking. We walk in and are greeted by 2 older people a man and a woman. They stopped us.

Woman: "Oh wow you have your hands FULL!"

Me: "A little bit"

Woman: "Are they ALL yours?"

Me: "Yup"

Man: "All biological?" (Thats a first!)

Me: "4 are. one is adopted."

Man: "Oh I think thats so good."

Woman: "Which one?"

Me: " You tell me?"

Woman and Man look over all the kids. They tell them to turn around adn look at them. "Hmmmmmm....Her!" They pointed to AJ.

Me: "LOL No. Our son is."

Woman: "Is he the youngest? How long have you had him? Do you know his mom?"

Me: I must be in a good mood because I didnt take offence to not being considered my son's mama. "Yes he is, he's 19 months old. We have had him since he was 3 months old. Yes we all know his birthmom and she is wonderful, we will see her next week in fact."

Woman:"Is she a teenager?"

Me: Sigh..." No...well kind of."

Woman:" so did he just fall into your lap, how did this happen?"

Me: Well when 2 peeople get together...no I didnt say that. Lol. I spoke about how we lost our child is Russia and then found Noah "He's a gladney baby."

Woman: "OH A GLADNEY BABY! Have you been there? Its beautiful. Did you know the girls that are pregnant can live there? Its a wonderful place!"

Me: "Yes we go there quite often."

Man: "How much is it to adopt a child in Russia?"

Me: " 30,000 without travel"

Man:"Oh my goodness...really? That much. WOW!"

Me: "Yep. If it's God's will its God's bill."

The man was talking about that and other things and then he ask why the kids werent in school. I said they were homeschooled and then he said well you must be really really smart. To which I replied, no I just trust God will work it all out and provide for us. He looked at me speechless and then he said

"I am so glad you said that so glad! You are such a wonderful person I dont know you but I know you are."

Then I must have turned my arm a certain way unknowing to me. The man looks at me and says " And you have a tattoo."

The way he said it almost sounded surprising like he was shocked I could be nice, trust God, adopt, have a brood of kids AND have a tattoo. I was fearful of where this may lead but hey not like I havent heard it all before. Then he shocked me. He told me last year when he turned 73 he went and got his first tattoo. LOL

He said he wanted to hug me so I obliged and went on to buy about all the kids clothes they had there as they were 1.00!

What a great day though. People never cease to surprise me. I hope that people who look at me can see this homeschooling, adoptive, tattooed mama can still love Jesus more than life itself.

Be blessed

Thursday, October 20, 2011

Reactive Airway Disease and other stuff

WARNING: This blog is all over the place because 1- I am all over the place right now and 2- it has taken all day to right. Things have happened in between paragraphs so please forgive my crappy blogging today.

Noah was just diagnosed with reactive airway disease. I really have no idea what it is. The doctor said that he is doing well and the Pulm was right to put him on all he did. The allergist added another nose spray to the list of meds and we will go from there.

I havent had time to blog really and even now I dont. Between all the new meds with Noah and dealing with doctors every week, therapists and fighting with the insurance companies plus having severe dehydration and dealing with my own medical issues blogging has really taken a back seat.

So what has been new? Noah is just amazing. He is walking everywhere and long distances. He loves to dance! He loves being outside. He has so much energy! And he absolutely knows and loves his mama!!!

Nutrition therapist just came:
Noah is 23lbs 2 oz and in the 11th% height is 32.6 inches and in the 43rd% He has not gained weight. This is concerning. He is growing but not gaining which isnt good.

Oh this post is taking forever and Im lost so pics???

Videos in next blog.

Be blessed

Thursday, October 6, 2011

Beautiful Letter

This was from a friends blog and she got it from another friend. We have no idea who wrote it but its beautiful.

My dear friend,
I am so sorry for your pain.
Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.
I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.
I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.
I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what he needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby in your arms and in an instant your heart filled. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.
You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.
You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.
You will question your faith. Or find it. Maybe both.
You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand his strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.
You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.
You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet boy be far better than OK. You will show him boundless love. He will know that he is accepted and cherished and celebrated for every last morsel of who he is. He will know that his Mama’s there at every turn. He will believe in himself as you believe in him. He will astound you. Over and over and over again. He will teach you far more than you teach him. He will fly.

You will be OK.

And I will be here for you. Every step of the way.

Be blessed

Wednesday, October 5, 2011

Swallow Study

Today I got up at the break of dawn and got Noah in the car to head to Dallas. Honestly I hate driving to Dallas. Its better doctors so that is why I go but really really hate the drive. Today it took...hmm...90 minutes I would say. Traffic is always horrible and then there is construction which throws off my gps so its a whole boat load of fun. :)

We get there and hurry up and wait. Story of everyones lives huh, just hurry up to do everything we do just to wait. Anyways, I put a mask on Noah. I do not need him catching something and being in the hospital. When we registered he was coughing. The lady registering him looks at me and says "How long has he had that!" I said since birth! He has a cough its his thing he isnt sick. People assume. I hate that. I hate when people turn away when he coughs thinking he is sick, I hate when people look at me like I am horrible and starving him to death because I dont order him food. People dont assume! Ask! And ask nicely not in a judging way. You dont know all the details.

Then we got moved from one waiting area to another there was a little boy there. I heard his mom talking to the dr about his gtube. That opened up conversation for us. He was 11 and there with his twin brother. The boy was in a wheelchair and not mobile. Pretty much non verbal too. I hate to say that though because I heard him "speak". You could tell what he wanted and what mood he was in. Noah went right over to him tried to move his wheelchair outta the way so he could play. I told him not too but the boys mom said Noah was fine. The boy loved watching Noah and Noah was laughing at what the boy and his brother were doing. Then the boy reaches over and takes off Noahs mask. LOL. He didnt look like he could control his movements enough to do that. His mom hollered at him but I told her it was fine. Noah was very appreciative of the kid taking his mask off bc he hated it on. I loved watching them play together. Noah inspected every part of the wheel chair, he was so curious. I am hoping my children will be very tolerant of other people especially ones with special needs. Right now it is all they know really.

So we get back there and get suited up. There are about 6 of us or so. Noah is the center of attention. The one specialist gets the food and begins to feed him. Yeah right! Noah looks at her like, "Woman you arent getting anywhere near me with that!" I laughed out loud at his expression. She gave it 2 mins or less and said "Mom you do it!" Then I began to try. He was a tough sell but I managed to get a couple bites in there. It was bite 42 pictures lots of chatting back and forth, make him look here, wild noises trying to get him to look, hold his hand down, more crazy noises, lots of people talking, next bite 42 pictures and it all starts again. I tried to bring calm to the storm and started singing itsy bitsy while I was feeding him. Seemed to work great for getting him to look, not so much for getting him to eat.

What we learned was his anatomy was better today than last study. So what does that mean. Everything works so no answers as to why he wont allow it to work.

Great. Really I am ok with it. He will eat when God wants him to and until then we will just deal with this.

Be blessed