Reconnecting with Blogger.com

After not having my internet and cable connection for months and months, I've finally logged back on. I've missed blogging. Getting all of my feelings out without feeling self-consious or like I'm bothering someone. Blogging gives me freedom. If you want to read my post, here be my guest I'll post the link. If not, that's okay too. It doesn't force anyone to listen or put pressure on people to respond. I love being able to close my eyes and type from my heart and then sit back and read what I've written. Learning things about myself I never even realized I felt until it's out and sitting right in front of me. 

Noah is now 18 months old. He's beautiful, smart, funny, polite and independent. He pushes himself around in either his Zip Zac wheelchair or his (demo) TiLite Twist toddler chair. He amazes me everyday. Because of our last crazy hospital stay in January I've decided that until Noah's medical issues and surgeries calm down I'm too unreliable to work. Noah still isn't saying very many words which was a personal requirement for me before putting him in any type of daycare or Preschool. So I've decided to enjoy staying at home with him until next Fall because I'll be going back to school full time. Then Steven and I will watch him in shifts until he's three and will attend a Special Needs Preschool and hopefully then I'll be finishing up my associates degree and entering my career field. Whatever that may be. Steven got an awesome new job complete with great hours and full insurance. We're getting on track with money again and we're happy and doing well overall. I have an idea for a blog post so I'll post more later. This was just my re-introduction. Glad to be back. <3

Update

Yikes! Sorry for the mysterious disappearance. I always say I'm going to blog more and then go through a period of time where I get so caught up in what's happening in life I completely forget. Well here's my update.

• Father's Day- Was awesome. We got Steven a grill, new fishing pole, and went camping! He seemed to really enjoy it :)
• Job Change- Steven's dad ended up firing him and now he's back working nights at AG. Because of the change we ended up selling his truck to make our bills and it's all just been really hard on us.
• New schedule- No more evenings spent together. Just whenever we thought we were getting life figured out, eating dinner together every night, spending quality family time together everything gets flipped around on us. Now Noah and I are alone all afternoon, evening, and night. Instead of having a partner to share the responsibilities of parenting with I'm now doing it by myself. I have to take Steven to work every day and get Noah up at 11 every night to go get him. It takes 30 mins to get there and 30 to get back. We're stressed and tired all the time. And still behind on bills, I might add.
• Noah was admitted to the hospital for excessive vomiting and suspected shunt malfunction, thankfully it was only a 24 hour stomach bug and we came home the next day.
• Noah's surgery is in 2 weeks and we're all very anxious and worried.
• Literally the only thing getting us by is each other. So thankful for all the support and love we show each other every day.

Only three months until Noah's Birthday and I haven't planned one bit. He's starting to army crawl and is still unable to sit up unassisted. But we're getting there. He still smiles all the time and gives me hope. I'll blog later.

Mother's Day is so Bittersweet

I woke up this morning to the sound of my baby whimpering and laughing through his monitor. The sun shining through my blinds and Toby curled up by my feet. I walked into his nursery and paused for a second, looking down at him. Laying there playing with his teddy bear so happily. I smiled and said good-morning as he slowly grinned back and giggled. Usually waking up at 6:30 isn't a very desirable thing, however today was different. Today marks a milestone. This day last year I celebrated my first Mother's Day with a baby in my tummy.

We didn't know the sex or diagnosis. As far as I knew I was having a healthy little baby. I celebrated. I was happy and innocent minded. I didn't know the world I live in now. A world that knew there were disabilities out there, but never experienced them being so close. Looking back I feel like I was just a silly girl who wanted to be a Mommy. Now I've experienced what it's like to be a special needs Mother. A woman who knows pain and suffering, yet still is able to find joy and happiness in small things.

So why is Mother's Day so bittersweet to me you may be asking?

 

A few days after Mother's Day last year we found out Noah has Spina Bifida. I felt absolutely helpless. That innocent, carefree girl was gone. It was the hardest thing I've ever done in my entire life. Endless pain. Torturous even. To give a sweet 19 year old pregnant girl a diagnosis that would change her forever. I cried and cried. Physical tears and even out to God. Asking him the reason behind this? This pain and agony. Why us? Why Noah? I remember almost too vividly the appointments. The heartache. The saddness. But one of the biggest memories I look back on is me sitting in the floor of our bedroom surrounded by all of Noah's things. One of his newborn diapers I bought, toys, clothes, wall decorations, and my Mother's Day card my family gave me.

My biggest thought was, why would God allow me to have such a perfect Mother's Day and then throw something like this at me?

It seemed like some kind of sick joke the world was playing on me.

But now I can sit and say, no. It was so whenever I woke up this morning I would remember to appreciate everything we've gone through. I got my beautiful, happy baby I always wanted. He feels unconditional love and brings so much joy to me. That's why today is wonderful and a little bit sad at the same time. Bittersweet. Yet absolutely amazing. Happy Mother's Day everyone.

Picking myself back up.

Sorry for the sad dreary blog post. Like always I've managed to pick myself back up from being so down. I searched for this poem and it really helped. It's easily my favorite. My faith dwindles sometimes. I feel guilty. I feel pain. But it's alright because I'm only human and need to see that I can't be so hard on myself. Maybe I was chosen for Noah. Maybe there is a greater reason behind all of this madness we endure. All I know is that I am strong enough to handle even the darkest, most miserable times this diagnosis will give us. And I will always be strong enough for Noah. I beat myself up for having moments of weakness but I have to realize it's okay to breakdown and cry. The biggest thing that helps me is thinking about how Noah might feel this way some day. Like life isn't very fair. And how I want him to learn to find joy in his life and pick himself back up whenever he's down too. He will always be my motivation to be a better person. I love him so much. I hope everyone enjoys this poem too. Maybe it'll hit close to home for some of you as well.

 

The Special Mother by Erma Bombeck

 

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia."

"This one gets twins. The Patron saint will be Matthew."

"This one gets a son. The Patron saint...give her Gerard. He's used to profanity."

Finally He passes a name to an angel and smiles, "Give her a disabled child."

The angel is curious, "Why this one God? She's so happy."

"Exactly", smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? Is that a virtue?'

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes here is a woman whom I will bess with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time, she will be present at a miracle and will know it! I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side."

"And what about her Patron saint?" asks the angel, his pen poised in mid air. God smiles, "A mirror will suffice."

It's happening.

 

 

The moment I've been dreading since Noah was born. It's painful for me to even type it, let alone begin trying to face it.

He's falling behind in milestones.

 

Yesterday a friend of mine posted a picture of her child standing and cruising, another mom posted one a few days earlier of her baby crawling. They're the exact same age as Noah. And I mean down to the same exact DAY. My heart has been shattered into a million pieces. It feels like as soon as I learn to accept one challenge that we go through another appears and brings me back down to reality. I will never be able to take a picture of Noah crawling or standing or walking. NEVER. Sure maybe with braces he'll stand. But it won't be the same. Noah still can't sit up and it's starting to hit me that he may never be able to sit unsupported. His back is weak and he just folds in half everytime. He get's so frustrated because he tries to do these things and his body won't let him and he doesn't understand why. I love him more than anything in this entire world and to see him struggle is the hardest thing I've ever gone through.

Noah held his head up at the right milestone, he even hit the milestone for rolling. But now he's behind. And no matter how much I work with him it'll never change. He's coming up on milestones that are impossible for him to achieve. It's hard. I can't even find the words to describe how hard this is. I feel like nobody understands. Nobody ever reaches out to me and asks how I'm doing with things. So here I am saying that I'm struggling a little bit right now. I can look at healthy children and not get sad anymore. Even as young as a 1 year old. That was a big step for me. But now I have to learn to deal with something even harder. Noah is a wonderful little baby and I love him more than life itself. I know he'll make it all okay. I just can't help but feel down sometimes. I really wish I had someone to talk to who understood. Sigh. Vent over.

What Spina Bifida Looks Like To Us

When I was pregnant I was so afraid my child would become
defined by his diagnosis. Instead of a "healthy" baby he'd be associated
as a "Spina Bifida baby" or "Child with a deformity". But the truth is,
he's not that different. He is a healthy baby who
HAPPENS TO HAVE SPINA BIFIDA.
So this blog post is about what Spina Bifida means to us.

 

S: Strength

 

Noah doesn't even realize how strong he's been.

He's gone through 5 major surgeries within 4 months.

We want to raise him to always be able to find the strength

within himself to overcome anything that comes his way.

 

P: Perseverance  

 

Perserverance means steadfastness in doing something              despite difficulty or delay in achieving success.

 

 

I: Inspiration

 

This picture was taken only minutes after his

3rd brain surgery. If this little guy doesn't spark some kind

of inspiration I don't know what will.

 

N: New Perspective on Life 

 

Living in the hospital for a month straight,

seeing your innocent baby go back to surgery time

after time, the nights when he stopped breathing, the ICU stays,

EVERYTHING

has given me and Steven a new perspective on life.

We appreciate every good moment we have.

 

A: Adoration

 

Who ever said "Special" was a bad thing?

Noah is unique and wonderfully made.

We adore him.

 

B: Beauty

 

Beautiful inside and out.

 

I: Independent

 

This one isn't fully mastered yet but he will get

there and learn to be as independent possible.

One step at a time.
 

F: Full of Life

 

Noah is a joy in everyone's lifes he's around.

Always so full of happiness and giggles.

 

I: Incredible

 

This is of Noah smiling for the first time.

Nursing in the NICU with an IV in his head

and heart monitors on. Happy as can be.

 

D: Determination

 

Working so hard in physical therapy.

Getting stronger and stronger each day.

 

A: Amazing

 

 



 I think it's easy to tell that I think my

Son is absolutely amazing. He's the most wonderful

thing to ever happen to me. Spina  Bifida has not put a damper on my love for this little one at all. In fact, it's made him all the more wonderful, inspirational and special.

 

My advice for expecting parents?

Always let your child redifine his or her diagnosis.

 

 

Helmet Time

After 4 months of weekly therapy to help resolve Noah's torticollus (stiff neck) from his shunt infection/surgeries his torticollus is finally gone and completely healed! Yay! HOWEVER, his flat head from those surgeries (and not being able to lay on his shunt side of his head) isn't rounding out by itself. So in a week or so goes and gets fitted for his cranial molding helmet. It breaks my heart that he'll need one but I'm just ready to get it on and off as soon as possible.

It isn't medically necessary, it's just a cosmetic/personal choice. We decided on a white helmet so we can decorate it freely. He'll need it on for 3-6 months. He'll need it literally on his head 23 hours a day. Big commitment but I'm ready. I'm not sure who this little girl in the picture above is (found it on google) but she definitely proves that it's easy to still be adorable even with a helmet. So hopefully Noah will be able to rock one as easily too. :)

I feel like other parents see Noah's flat head and instantly judge me. I'm sure they think that I'm just a horrible teen Mom who leaves my baby on one side all the time. Which is so far from being true. Little do they know he's had 5 surgeries and works his butt off in therapy each week to progress and heal his neck so he won't want to lay on that side anymore. I do stretches with his neck every single diaper change. That's a big commitment as well. So I just let people stare. Now he'll have a helmet and I'm sure the looks won't get any better or easier to handle but at least he'll be improving. All that matters to me is Noah's future. I'll post pics as soon as his helmet comes in. :)