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. :)

Zoo Trip (Part Two)

This Monday we decided to head up to St. Louis to visit their Zoo. It's much more impressive than ours and we spent the whole day there walking around and having fun. Noah LOVED it. His favorite exhibit was still the elephants but he also likes watching fish swim in aquariums and butterflies :) It was great spending time with my little family. I enjoyed every minute of it. Soon I'll be taking my real estate class again and won't be able to spend as much time with them and just was an overall great trip.

 

Recently Diagnosed with Spina Bifida? This is to you :)

Lately I've recieved quite a few emails from mothers who just recieved news that their little ones have Spina Bifida. It's made me realize that a lot of my blog posts are fairly negative. I usually only think to blog when I need to vent and I'm not always down about Spina Bifida and Noah's health issues. So this post is directly for those Mothers who find my blog and are looking for a little hope.

So here are some positive things about my child who happens to have Spina Bifida:

• He is beautiful. He does not look disabled or different. The only physical difference about him is that his legs don't move.
• Noah is healthy. Maybe not "healthy" in the sense that he doesn't have a severe birth defect- but overall he isn't always coming down with colds or ear infections. He was approved for the RSV vaccination (which is very hard to get and many sb children do not get approved) we turned it down AND he did get RSV and wasn't hospitalized and he fought it with a simple antibiotic. He wasn't expected to yet he did.
• His fine motor skills are coming along much quicker than other children his age. He can turn pages on a book, pick things up with two fingers and has a lot of control over his arms and hands.
• He is happy, ALWAYS. He has no idea he's had 5 surgeries, has a shunt in his head, can't feel his legs or anything. All he knows is that he likes toys, Mommy and Daddy and his puppy Toby. He likes laughing, cuddling and watching cartoons just like any other child.
• YOU GET USED TO IT. This is probably the most important thing. When you hold Noah his legs dangle. You learn to manuver him anyway. To swing his little legs around to set him in your lap. Sure, it's hard putting him in his jumper. His legs get caught up if you're not paying attention. But overall it just becomes a part of your life.
• Being a special needs parent is a challenge, no matter the disability. But with Spina Bifida you can really take it one step at a time.
• When your child is a newbon they can't walk anyway. Healthy or not. They rely on you to carry them. In a carseat nobody notices your child's legs aren't moving. Maybe you have a lazy baby in their eyes.  Not everyone moves their legs constantly. Once you accept your newborn's legs don't move, they become an infant. You get used to moving them around like I said above and then they hit 6 months. You're a pro by then. Once they hit a year you start thinking about braces, walkers and wheelchairs. I'm not there yet. Noah is only 6 months. But with this disability you can really ease into it. I'm very thankful for that.

There are so many more wonderful things about Noah that I can't even put into words. The way he looks at me. Reaches up for me when I go into his room after he's woken up from a nap. His little arms tightly around my neck. His smile. He is perfect. And if you're expecting a child with SB as well I PROMISE eveything will be ok. It's not your fault. You are strong enough. It's okay to cry. It's okay to feel weak sometimes. But your baby will pull through and embrace his or her differences and so will you.

Love,

Genevieve and Noah

xo