“I’m giving you all my love”

When I was about 23 weeks pregnant I went to an ultrasound with my mother and older sister to find out what sex my baby would be, and it was a girl! I was so excited. That day would also be the day I was told the diagnosis of my little girl. Spina bifida, hydrocephalus, cleft lip, and other abnormalities they believed to see on the ultrasound. I was devastated, depressed, and confused. I took anxiety medication the doctor prescribed that was safe for Alyssa too and I slept, for days.  

Once I was feeling better and actually processing our future, I heard a song that stuck with me. Jason Mraz “I Won’t Give Up” came on the radio on my way to work. The lyrics hit home. 

“When I look into your eyes

It’s like watching the night sky

Or a beautiful sunrise

Well, there’s so much they hold

And just like them old stars

I see that you’ve come so far

To be right where you are

How old is your soul?”

The lyrics grew greater meaning after her birth. As you previously read, being in a NICU for over 5 months had become a struggle. I listened to the song on repeat most days. I would not give up, we had a future to live together. I was going to see her through to college, then move with her, mostly because I’m officially obsessed with her. 

“‘Cause even the stars they burn

Some even fall to the earth

We’ve got a lot to learn

God knows we’re worth it

No, I won’t give up”

Learning her life, learning our life together, learning to try to manage everything, and learning to give her the best. It was A LOT at one point, but then something just takes over. You just start doing everything out of love, because you’re a mother and that’s what your heart knows. 

After all is said and done and Alyssa grows to be a beautiful young girl I would want her to know, above all things, God has a plan for her. I’m only here to help her succeed and I’m going to do my best for her and she will have to do the best for herself also. Never give up cupcake. 

“I won’t give up on us

Even if the skies get rough

I’m giving you all my love

I’m still looking up”

This is the first song Alyssa and I listened to with her cochlear. It will forever be our song. 

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Goodnight, cupcake. 

We are back in the hotel and trying to keep our schedule as normal as possible. Play time, feeding time, bath time, and then extra time for cuddles and kisses. The way you get so excited when you have our attention, It’s so heart warming. But to be honest, our nerves are a wreck. 
Tomorrow we know things can go one of two ways. Scenario one, Dr. Horlbeck mentioned on surgery day, 2 weeks ago, that your nerves are very tiny, meaning that when your cochlear is activated you may not have any reaction. And while we are okay with that, because that is our norm, we can’t stop thinking about scenario two. 
Scenario two, Stacy, our most favorite audiologist, sits us down, activates your cochlear, and your precious face lights up. Or you start crying, it’s a sensory overload, but we, selfishly, want the REACTION. no matter what it is. 
Alyssa we love you so much, it’s unexplainable, I cry thinking about it, as any mother does. But I prayed for so long, that you could just hear me. Hear me and your father telling you how beautiful, amazing, inspirational, strong, and smart you are. 
No matter what happens tomorrow, putting you to bed tonight is such a raw experience. This all we’ve ever known, almost 4 years of this life, and knowing that it can change in an instant makes it near impossible to lay you down tonight. Tomorrow at 9am, our whole world could be completely different. YOUR whole world could be different. It’s so impossible to imagine that we started this specific adventure with you one year ago. 
We hope, if all goes as we imagine, you love this world of noise as much as we do. At the end of the day, we accept this is God’s plan. He knows what is best for you and He knows your path, and we have to trust it. We love you forever Alyssa. 
Goodnight, cupcake. 

She is a beautiful story.

God sends special babies to special people. There’s no way that pre-baby God looked down and was proud of me. I was lost, unorganized, bitter mostly. I didn’t live my life according to any standard. I just didolkolt me, and not my best me either. He saw potential I guess, and I could never thank Him enough.

Alyssa saved me. Alyssa teaches me. Alyssa brings me hope. Even though with her journey we can find ourselves in the lowest valleys I look to Alyssa to bring me out. Her strength and her love is what motivates me. I look back and  I was literally nothing without her. When I had my baby I found prayer again, I found a way to talk to God in a manner so effortlessly. I praise Him and the power of prayers whenever I get the chance to share her story. I am by no means special. Alyssa is. God made her so carefully. This is not to lead you to believe that I have never questioned our journey.

A peek into a special needs mothers mind, when her child is first born, ill, battling every single day, in pain, looking at you, her mother, to help her, and you can’t. You can’t rock her to sleep, you can’t hold her, you can’t soothe her, you can’t give her a bottle or bathe her. All you do is stare. And cry. And beg your baby to calm down because “It will be okay.” You know in the back of your mind it might not be. Your guilt is at an incredible high. Did I make the right choice? Will she love this life, or blame me for it?

One of the SCARIEST moments I had was when Alyssa was first in the NICU, things were going terribly wrong. My mother and I returned to the Ronald McDonald house that night, and I sat in the family room, alone, and called my older sister. My best friend. As the phone began to ring I looked up and saw a picture of an angel holding a child and it hit me, I thought the worst thought I could of imagined as a mother, “would it be better if she was free from her pain, in heaven?” My sister answered I burst into tears and repeated this question over to her countless times. I was so full of doubt. Alyssa? She is only hope. She knows nothing else. She is a fighter. She is an inspiration. She is a beautiful story.

I’m no one special. Cupcake is. My daughter made me into something I hope God can be proud of. I will never stop fighting for my little angel. I will never stop loving my little angel. And I will never let go of my little angel.

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“What’s wrong with her?”

Today we set off to our usual Wednesday appointments, occupational therapy and physical therapy. Alyssa was looking extra precious in her new outfit I found on sale (still so excited about the purchase) and as always she was in the best mood. Being that we go every Wednesday at the same time we typically see the same families. Today was different. As we walked in we saw a new family and almost immediately we hear, “What’s wrong with her?” The child was laughing and asking the parent this question over and over again. I almost exploded.

Alyssa wears AFOs to her appointments, these help support her ankles and feet as she cannot due to paralysis. Little cakes was born with Spina Bifida; therefore, she has no controlled movement/feeling in her legs. She also has an colostomy, which most days there is no true way to hide it in her clothing that would be comfortable for her. Needless to say, his question was sparked by his curiosity I’m sure.

Kudos to the parent,  I could feel his embarrassment as he quietly tried to tell the child that nothing was wrong with her, “but her feet look broken, are they broken, are those casts?” I get it, most adults stare occasionally, so expecting a 1o year old to be a little less harsh was probably unrealistic. But parents I’m asking one favor.

STOP ANSWERING THAT QUESTION.

I know they are asking, I know this is your opportunity to educate and show that you are trying to obliterate the stigma of special needs, but correct the question. Don’t try to answer in a kind way and sugar coat every little word because I know that you know I’m officially eaves dropping to see how you handle the situation. I mean it is my child. But take this situation and tell them that because someone is born differently it is not WRONG, it is just that, different. “Are you asking why she wears something different than you?” Nailed it!

Nothing is wrong with our kids, I understand the question, I appreciate the answers people are starting to give, but stop answering, start correcting the way they handle their curiosity.

 

 

7 days

On July 27th Alyssa underwent a cochlear implant surgery. She was born deaf and hearing aids did not seem to help her hear to much of anything. She has never responded to my voice or her dads. She does know how to say our names in sign language which was a HUGE accomplishment in our house. We could barely stand it, and yes, she said “dad” first.

We decided to only have one implant placed on the left side because she has an amazingly beautiful VP shunt on the right side and we didn’t even want to go there. In 7 days, August 17th, we will be traveling back to Jacksonville to have her implant activated. Because her nerves are very small we aren’t sure what type of reaction she will have on Wednesday, but as you can guess my imagination is running wild! Her dad jokes that when they activate it she will be already speaking in sentences, our little one has been through more in her 3 years than most adults.

It seems that everyday she teaches me that its the little things. All those days your little one may be talking your ear off or yelling your name 10,000 times and you’ve just about had it, theres another mom out there dying to be in your situation. That mom is me. The day I can hear a “Mom” or a big “I love you” I think I’ll melt. Love your kiddos and listen to those ridiculous stories, even if they repeat themselves. image2This picture was right before they took Cupcake back to surgery! Cochlear placement was uneventful and successful, two words we LOVE!

Our dearest little girl.

image4This blog is dedicated to Alyssa, dedicated to our struggles, our triumphs, and our situations. As parents of a special needs child our life is a little bit different than the “norm” and those differences can be challenging and at the same time extremely rewarding. This is a new way to look into her journey with hope and not pity, this blog is to open the boundaries. She is fearless and of course I want to share her joy with others. I love telling others about Cupcake, the more hope shared and the more questions answered is promising for a better future for her. This is about acceptance. Once we learn to accept those made specially, the more we can close the gap. It’s 2016, and its time.

The picture is miss Alyssa giving her “thumbs up!” Everyday this is her joy and everyday she is pouring out love to all those around her. Be more like Cupcake.