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.