Just Let Me Know

I know I'm supposed be writing about my AWESOME trip to Indianapolis this past weekend. But the topic of this post has been on my mind since last week and I just need to get it out of my brain and into writing. I promise I will post about Indy soon but, right now, this is more important to me. So here it goes...

Please just let me know if you need anything....

[Edit: You may be easily offended by this post. You may think that I am complaining. You may think that I am looking for someone to feel sorry for me. I don't care. That's not why I wrote this and that is not what my implications are at all. I realize that I am subjecting myself to the harsh world of the Internet and all of the judgments that come along with that. If you don't have a disabled child to take care of, then you don't know what I am going through. You don't understand the emotional and and physical exhaustion that I feel every single day. If you hate this post, then stop reading my blog. If you like it, if you relate, then good for you and keep on reading... Love, Devyn.]

I cannot tell you how many times I have heard people say that to me. And, honestly, it sucks. I feel like it is a way for people to make themselves feel better instead of actually helping. I don't care how sincere you are, it doesn't make any difference in my pile of laundry. It doesn't move my mountain of dishes that have been sitting in the sink. It doesn't entertain Oliver when I simply can't play trains on the floor for 5 more seconds. It just doesn't. And it sucks. 

I am not too proud to know when I need help. It's just the asking part that is so, so hard. I'm not going to call you up and say, "Hey, I don't have anything to cook my family for dinner and I'm way too exhausted to get creative with chicken and rice for the 4th time this week. Would you mind dropping off a casserole for us?" I'm just not going to do that. I don't think anyone would do that, really. 

If you really want to help, come pick up Oliver and take him to the park. I swear it won't be weird or awkward. If you really want to help, come over and vacuum, or wash some dishes, or do any little thing that would make my day that much easier. I promise I will not turn you away. I want the help. I need the help. An awful lot of people have said they will do anything to help, but where are they? 

Excuse me, if I sound whiny or rude. I'm not asking for a personal maid to clean my house, cook my dinner, and watch my kids. But occasionally, a break would be nice. 

This post is more about bringing awareness to anyone and everyone who has ever said Please just let me know if you need anything.... 

If you mean this, then do it. And don't wait for a call. A new mother, a parent with a sick child, a caregiver to someone with disabilities, doesn't have time to sit around and feel sorry for themselves and think, "How am I ever going to do x, y, z..." They just get up and do it. But I guarantee that if you showed up at their door and offered to put in a load of laundry or clean out the 6 Tupperware containers in their fridge of who knows what, you would not be dismissed. You would instead see a face full of gratitude or, at the very least, relief. Don't just say this and turn around feeling better about yourself for offering, actually do something.

Please just let me know if you need anything....

Believing

Having a special needs child is all consuming. You spend every second either physically taking care of them, or researching the latest on their disease, or worrying about what to do next. You literally never get to rest. Even when you are alone for 5 seconds of the day, all you want to do is shower, or eat, or sleep. It is so tiring. Most of the time I'm too tried to pray. For a long time I was too mad to pray.

The fact that God, who loves me and only wants the best for me, made my son the way he is just seemed like a cruel joke. We didn't have answers for a long time either. We didn't know why Noah needed a tracheostomy besides the fact that his vocal cords weren't working right. We didn't know why he was unable to sit up, roll over, or play. We knew something was wrong but nobody could tell us anything more than that. It was beyond frustrating. How are you supposed to help someone when you don't even know where to begin? I honestly thought there may never be an answer.

And I was mad.

I was mad at the doctors who didn't even have a clue. I was mad at myself. He grew in my belly. Did I make him this way? I was mad at Nathan for not understanding me. I was mad at anyone and everyone in the world who has completely normal and healthy babies. I was mad at God. I thought I would never forgive Him. I would never understand why this had to happen to my child. If somebody punched your kid you'd be mad, right? I feel like Noah has been hurting his whole life and God made it happen this way.

Why?

And then I had a dear friend pose the question why not? 

Why can't we use this disease and Noah's struggles for the greater good. Not only good for ourselves, but for other people. Why can't people look at me, my family, Noah, and see such great strength and grace and faith? That is what I want to be about.

I made a conscious decision in that moment to believe. With everything I have. I believe. I have to believe. I have to know, without a doubt, that when Noah meets the end of his life here with us that he will go on to a place that is far greater than it is here. A place where he can walk and talk. A place where he doesn't rely on machines or medications to make his day just a little less uncomfortable. I have to believe. I do believe that he has a special place in Heaven that already has his name on it.

I believe that he was sent here, to me, to teach me this lesson. To show me what real sacrifice is about. To show me how to love unconditionally. He is my angel and I believe that he has saved my life the same way that I fight every day for his.

I love you, Noah Jack, my personal angel.

Daddy

Just like the post I wrote yesterday, I am bawling as I type. I am such a Daddy's girl. I can't even come up with the words to tell him how much I love him and how I feel so loved by him.

Every time I go over to my parent's house he usually walks me out to my car as I leave. Every time, he gives me a hug. Every time, in that moment, I wish I were little again. I wish I wasn't out facing this big, scary world. I wish I could still have him making my dinner and bringing it to me on a plate as I sit on the couch watching tv. I wish I didn't have to grow up so fast.

I got pregnant with Oliver when I was 18. I was terrified. Nathan and I had only been dating for a few months when we found out I was expecting. We were terrified.

I felt like getting sick every time I thought of the moment when I would have to break the news to my Dad. My Mom and I decided to wait a few days so we could find a time when we were all at home and could have some time to talk about it and process everything. I was so scared. What if he gets mad? What if he yelled?

Or worse, what if he was disappointed?

I had dreamed up so many scenarios of what that moment would be like. And then my Daddy totally surprised me. After I told him, with tears streaming down my face, he looked at me and simply said, "Okay, so you're going to be a Mom." There was no yelling, no anger. He might have been a little disappointed that my life suddenly just got 10 times harder. But even if he was disappointed, he never said that to me. Then he told me to invite Nathan over for dinner... Amazing, right?

Things might have gone differently if he wasn't the Man of Faith that he is now. He loves completely and totally, just the way his Creator does. I am so thankful that I have such a loving Daddy. There are many children who cannot say the same.

Happy Father's Day, Daddy.

I love you.

 

This Is For You

I have been feeling very emotional the last week or so. Crying for seemingly no reason, storming out of the house. I am an extremely sensitive person. I used to cry during volleyball games or practice in high school when I did something wrong and my coach started yelling at me. Not exactly a great trait for a Team Captain.

I look at my children and I cry from having so much love in my heart. I go through pictures of them as teeny, tiny babies and I weep. I am crying as I type this. In fact, I cry with almost every blog post I write. I write from my heart. I write with my soul. I write to have an outlet for all of my emotions that I have to keep mostly contained during the day.

Sometimes    like today    I feel like a crazy person when I answer the door for the UPS guy and I have tears running down my face. I feel like it's okay for me to cry though. Sometimes it is all I know how to do. Most of the time it is all I can do. And I usually walk away from my tears feeling just a tad bit lighter than before.

This post is for you. Whatever you are going through. Whether you found my blog because you have a special needs child and you need someone to relate to. Whether you are a part of my family and you feel my pain, too. If you are lost and wandering and mad and lonely. This is for you. It is okay to cry. It is okay to be sad. You are only human and crying makes you even more real, more whole.

To weep is to make less the depth of grief. 

         William Shakespeare

So Proud

Noah had a beyond awesome day! First he started off with playing with one of his toys. I wrapped his hand around a rattle that hangs from his play gym and he loved it. I would shake his arm to show him how to make noise with it. He stayed like that for a good 10 minutes. Then we took a trip to the splash pad. I was kind of nervous since Noah hates anything that is new. He also startles easy so I knew the cold water would not be his favorite thing. He did so much better than I thought he would! He cried a little at first, like he does with most things, but then the more I kept making him touch the water the calmer he was. Here are some fun pictures of my big, brave boy!

He is not excited. 

Little man.

She pointed to his trach ties and said, "Why does he have that?" I told her it helps him breathe.

Laying back in the water...

....And crying.

Not wanting to wear his speaking valve.

Laughing.

Miss Brittney and sleepy Noah.

Oli loves PB&J.

I Will Miss Them....

In a little over 2 weeks my Mom and I will be off to Indianapolis for the 24th Annual Riley PMD Family Conference. As the day gets closer I become more and more nervous.

I have never gone a day without seeing Noah. I was at the hospital every single day for 8 weeks while he was in the NICU. There are so many things about Noah that I can feel. I can't explain it. We have a connection I have never experienced before. I guess it's a Mother's intuition heightened by his lack of communication. I almost always know what he needs. Whether it's a diaper change or a back rub. I can feel it. I am so sad that I will be missing for 4 days of his life.

It is so hard to leave Oliver, too. He misses me and he is very verbal about it. Where's Mommy? I know it will be a good opportunity for some Daddy and Oli time. But I just really hate that he knows I'm not here. Hopefully when I get back there won't be any acting out. I've noticed the last 2 times that I've been gone with Noah in the hospital that when I get back, the next few days Oliver likes to push buttons and test boundaries. I guess that's his way of getting back at me for leaving.

I know this is a wonderful opportunity for me. I am so grateful to everyone who helped up with the fundraiser to be able to go on this trip. I really think the time away will do good things for my mind and spirit. When I get back I want to be a better Mother. They say absence makes the heart grow fonder.

Hopefully I will come back with an arsenal of knowledge that I can throw out to Noah's care team. I have to remind myself that I am the expert on Noah. I have done the research. I am his Mother.

Overall, I am very excited about this trip. My little mini-vacay. Please pray for safe travels for my Mom and I. And please pray for me as I leave my children for the first time in their very short lives. I will miss them and I hope they miss me even more!

"Oli Says"

A few weeks ago someone told me that I should make a list of all of the cute phrases or pronunciations that Oliver says. I will want to remember everything so precious and innocent when Oliver is a teenager and isn't acting precious or innocent anymore. So here is a list and I will add to it as he gets even cuter...

"Croc-ta-dile"    Crocodile

"Chick-A-Way"    Chick-Fil-A

"Does that make sense?"    He asked me that question after telling me a lengthy story.

"Chock-wit milk"    He thinks all milk is chocolate milk.

"Hos-i-ble"     Hospital

"Skoo Bus"    School Bus

"I wanna hold you, Mommy"    When he wants to be picked up.

"Rocket chair"    Rocking chair

"Ol-i-ber Chay-cub Hen-er-sin"   Oliver Jacob Henderson

"Take a doo-mp"    Take the trash to the dump (dumpster).

There are 10 cute Oli phrases and words. Say them out loud so you can get the full cuteness effect. Stay tuned for more because this kid comes up with some funny stuff.