On your special day

Everyday I am so grateful God gave us you, but especially on this day. I could say so many things, but I don’t think my words would begin to describe the fierce love I have for you. On your sweet day Cupcake, our wish for you is endless happiness and love, the same kind you give us daily. We love you. Always. 

“An angel sent from heaven, for me she left her wings, I wonder if she knows how much joy to me she brings.”

Happy fourth birthday Alyssa. 
     -Love, Mommy & Daddy

Advertisements

What you don’t see. 

Sometimes I wish the minutes in the day weren’t so calculated. I’m tired. We’re tired. We max out our schedule at all times, but we have to. 

Alyssa is seen by her therapists and teachers seven times per week. Seven. And that is JUST therapy and lessons, that doesn’t include her PCP or her specialists, blood work, or anything in between. My phone rings nonstop, follow up information, making new appointments, rescheduling appointments, nursing lines calling back to answer my questions, coordinating medication and supplies deliveries. Add traveling for speciality care since our city is slowing progressing in the healthcare field. 

Her feeding schedule, set in stone, 10a.m, 2p.m, 7p.m, 11:30p.m. Water flush every hour in between feeds, medication at 7p.m before her feeding starts. Diaper changes every 2 hours so she doesn’t develop any rashes. Putting her in the stander several times a day for an hour each. Everything is scheduled. 24/7. You can barely leave her alone for 5 seconds, you won’t find a play pen in our house that she can sit in and entertain herself. We also try to take Alyssa out to fun events so she doesn’t correlate the car with appointments/ the hospital. 

In between that we are pushed to work, Mark works full time in a stressful environment and I work part time from home. I don’t know how to fit anymore hours into a day, minutes even. When nursing falls through I can barely work at all since every minute is dedicated to teaching, feeding, flushing, changing, carrying, watching, appointments, and everything else on our list. 

Keeping the house clean is beyond me some days, and showering? I’ll get to that at 10p.m when I put her down, that gives me 15 minutes before she starts crying and I just put her in our bed. It’s easier. I can check her tubing and pump, air out her ostomy, and just look at her every hour from the comfort of our bed. There is no real break. 

When people say “you wouldn’t even know something was wrong with her” I just laugh. It’s because we kill ourselves to get her the care and attention she needs to remain clean, healthy, active, and involved. So much goes into our routine. 

I know I rush around, I’m constantly shouting out new dates for appointments or deliveries, what needs to be done, where we need to go. I honestly annoy myself. But I’m trying, and I’m definitely still learning. We are learning as a family, and while some lessons are more difficult than others, it’s our journey together, as cupcakes family. 


Alyssa enjoying some Christmas lights with her daddy. 

What I Love Most 

I love in an extremely reserved manner. Extremely reserved. I don’t truly open up to a lot of people, like most of my peers, due to years worth of lessons. 

But, what I love most is that Alyssa, who has gone through the toughest of times, loves so powerfully and unconditionally. She has no boundaries. When we wake up next together she gives me a dozen hugs and kisses before we even make it out of the bed. And throughout the day, she gives me hundreds more. She loves to love. 

Because of her oral aversion, dentist visits are very difficult and although she may be screaming crying she’ll sit up, laugh, bust a traditional cupcake dance move, give you a thumbs up, and laugh it off. I wish I had her mentality and her strength. A heart so big she won’t ever be jaded, because her happiness permeates a room almost instantly. 

One day at therapy two little kids hugged infront of her and she got so excited that she reached right up to hug me. She gives kisses all day, she even scratches your back if you lean forward in front of her, which is quite possibly the most adorable thing I’ve ever seen. She rubs her daddy’s head if he lays down by her lap. Her heart is so full, she just wants everyone to be happy and approving,  and it’s so refreshing. 

While this life can have its challenges, it’s balanced out by the little things. When it comes to cupcake, unconditional love is a lifestyle, and I’m so happy I was chosen to fit into her arms for a lifetime worth of hugs and kisses. 

Let go, mommy.

Little Cupcake is getting to be so independent! And, as always, I’m not sure how to handle it. I understand what it may look like from the outside, an over protective, overbearing mother. The memories, nearly haunting, are always there and I honestly can’t help it. Then I look at her, rolling around the house and trying to open the cabinets and the refrigerator and giggling as she navigates the hallways,  hitting just about every door frame, and I realize she has come so far. We had an appointment with our favorite dietician, and human, Jamie. And while she was verifying my hesitant nature she was also kindly letting me know “it’s ok.” It’s ok to let go, to try new feeding settings. Imagine something so small, a setting on a feeding pump, igniting my anxiety. Jamie and I watched her struggle to the point she was placed on TPN. But, why am I scared now? Alyssa, overall, is in great health. We are so blessed.

I think most of my issues stem from the beginning. When she was in the NICU I remember so vividly that my mother was talking about rearranging my room back home so we could fit Alyssa’s furniture in my room, and I told her to stop planning so far ahead because we didn’t know if she was coming home. It was such a low for me. I was blocking everything, and everyone out. Then as soon as she was discharged from the NICU we drove home, and were readmitted. Some admissions she fought so hard. From being septic, to not tolerating feeds, to shunt revisions, to infections, she has done it all. And she has overcome.

I know I  need to let go, I know I need to trust, but I also know I have a lot to work on as a mother. She still fits in my arms perfectly. I still carry her place to place, even though lately it has been very difficult since my little angel is growing, but I don’t want to put her down, I don’t want to spend one minute away from her, because we were so close to not being together forever that the feeling is etched in my heart.

Cupcake, I promise to work on me, but give me time. And everyone else looking in, don’t judge, those moments, now far away, were raw, so I do find it more difficult than the average person. And Jamie, thank you. I owe you so much. Here’s to celebrating Alyssa’s independence, curiosity, and life.

img_0917

Slow down. Calm down.

Today sucked. Mostly because I set myself up.

When I traveled to Gainesville to meet Dr. Pinkus, the neurosurgeon who was going to operate on Alyssa after birth, he started explaining to me, in depth, about her primary diagnosis, Spina Bifida. He explained the correlation between the position of the spinal chord damage and paralysis of the body. And of course, I cried. I wanted her to walk, run, and play like I did growing up. I never missed a weekend at the skating rink, I played sports all throughout school, and all I could focus on was what she would not do.

Fast forward to countless therapies later, a group of people surrounding her giving her so much support, and her sheer motivation, and cupcake can get in her wheelchair stander and roll around, still learning. She has independence in her own ways. Then I heard “gait trainer” earlier this week from another therapist. I questioned it for all of .5 seconds, considering she has no flexibility in her right knee, a severely dislocated right hip, which we as parents and doctors, 2, decided surgery would only be a short fix with no long term beneficial purpose, but I just ran with those words.

For those who may not know, a gait trainer would help improve walking ability, which Alyssa is nowhere near at this point in her life. In time hopefully, but not now. So today when I mentioned it to her primary PT, he did the right thing. He took me aside to explain to me why that would not in Alyssa’s best interest at this time.

I set myself up, and of course continued to cry for the next 45 minutes. I felt so stupid. It was like diagnosis day all over again. I know Alyssa has big things in store for her, I know her therapists want the best for her and I trust them more than anything and I got so far ahead of myself. The last thing I want to do is get Alyssa some type of device that would discourage her from all of her hard work. Today I was taught, again, to not let things excite me too much. Alyssa will get to where she needs to be in her own time, whether that means a gait trainer, a walker, a wheelchair, whatever it is. I have to slow down and support her with time.

 

“Slow down. Calm down. Don’t worry. Don’t hurry. Trust the process.”

 

 

 

Lessons learned from Cakes.

“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12

Alyssa changed my life. When I first had her, it took time to adjust. I was in an awful space mentally. I prayed when things were looking grim. I prayed when she couldn’t breathe, I prayed with every new diagnosis, I prayed with every ER visit or admission. I prayed when she was fighting SO hard with no progress.

Then I realized, I’m only praying when I’m scared of losing her. And in those moments I was also angry. Angrily praying. Questioning. Resenting. God makes no mistakes. He did not make Alyssa to hurt her, He made her with hope. With intention. A strong purpose. So why couldn’t I pray for her needs during the “in between” time?

Our “in between” time is precious. I celebrate our hospital admission anniversaries. Its been just over 3 months since our last admission, a reoccurring admission due to her neurogenic bladder and her almost constant UTIs. She’s doing so great. I pray for her health. She goes to all of her therapy appointments with a little sass(and mommy loves it). She has 5 appointments a week, her awesome therapists are helping her reach milestones, use her muscles, and have fun while doing those things, and she just keeps going, never complaining in any way, shape, or form. I pray for her endurance. She has the best attitude for her journey, she is able to laugh through pain, she is able to persevere. I pray for her strength. And one day, hopefully in the far future, she may question her journey, and for that I pray for her understanding. I want her to learn and remember Romans 12:12, like I have had to teach myself. Pray in the moments of hope, the moments of uncertainty, moments of pure happiness, and moments that sadness may consume you so deeply that only God can help your heart heal.

Alyssa has taught me prayer. She has taught me that in the scary moments you can’t use anger or aggression, you HAVE to let God handle it, I can only advocate. She has taught me to be so thankful for the sleepless nights, the unending appointments, the traveling, the stress. She is my everything. She was made so beautifully, only God can do that. Only God can send an angel to Earth.

And now I know at night I need to pray to Him, and thank Him.

prayer1

 

“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. 

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.

image3

“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.