“Coming up for air …”

Shortly after becoming a mother you’re internal instinct kicks in and all you are driven to do is protect your child. It’s overwhelming in the best way possible. And when your child requires extra attention and every ounce of energy you never even knew you had, it becomes draining. But then, one day, you become accustomed to it. And by “it” I mean the sleep deprevation, the stress, anxiety, depression, the waves of emotions that will exhaust you beyond comprehension, the absolute requirement to be extremely detail oriented regarding every aspect of your child’s daily and nightly routine to ensure they are being cared for to the standard you expect (which is more complicated than it truly should be) and it’s mentally exhausting. 
For four years I have been trapped in this fight or flight mentality. Ready to demand the best care for Alyssa for a productive and independent future, because, surprisingly enough, me and her father have had to fight for those extremely basic rights. And in between all of this I lost who I was. I had no identity. Honestly, I can barely hold a conversation if we aren’t talking about Alyssa, and it’s embarrassing. And now, suddenly, Alyssa is in PreK. She’s excelling. She’s signing more. She’s communicating. She’s gaining more and more independence. And I have time. Me and her father actually have time in between her extremely packed schedule and our work schedules. 

And I’m just … here. Almost lost, because what do I do with all this extra time? 

 So last week when we were waiting to do our 4 week labs and I broke down in the waiting room in front of more people than I’d like to admit, I reached out to an extremely kind human being who I love. And something she mentioned was that maybe this is me “coming up for air,” and I’m finally paying attention to myself. To my mental health, which has been grossly neglected. To my needs. To finding myself again. And she’s right. 

It’s a new experience for me. I can run an errand by myself without rushing to get back home, or better yet, spend a morning with my amazing boyfriend with 100% focus on him, and us. It’s refreshing, different, and a whole different experience for us as parents. And I’m thankful. I’m blessed. I’m honored to be living this life with the two most beautiful people on this planet. And I’m coming up for air. ❤️

Advertisements

What Do You See? 

“Pity is an emotion that almost always results from an encounter with a real or perceived unfortunate, injured, or pathetic creature.”

I often wonder why pity is the first emotion that crosses a persons mind when they see Alyssa.

A few days ago we went to the hospital for appointments and I let Alyssa use her stander there for the day. I was excited for her for two reasons, 1) she needs to be in her stander for at least one hour a day, so I was killing two birds with one stone (personal victory) and 2) she likes to be independent. Perfect set up!

 But then she starts rolling, or not rolling mostly due to her stubbornness, and you see all these faces turn in her direction. Watching her, like she’s an invalid. Pity. Sorrow. 

Now I can’t say I completely blame that reaction. If you don’t get the vibe from this blog already, I’ll fill you in. I literally hate the lack of acceptance of the special needs population in my community. When I was younger, and ignorant, and saw children out with their families who required different needs, I had the same response. I pitied that family. Assuming that child, or even that entire family, was sad or disappointed with their journey, and I couldn’t of been more wrong.  But I was a child, and I didn’t know any better. Then after I had Alyssa I pitied her myself. I felt like I had given her the worst scenario imaginable as an infant and all I could do was apologize. Repetitively. Until I realized her life will be more fulfilling than I will ever understand. And honestly it may not be meant for me to understand. So when it comes to adults, I have little to no patience for that thought process. 

When you see Alyssa, or any other child that may seem different on the outside, I hope you see what I’ve learned to see.  Perseverance. Strength. Pure joy. A beautiful soul, an old soul with more wisdom at 4 years old than most people will encompass in a 90 year life span.  As a matter of fact, I hope you envy her.

 I do. 

I hope you see a girl who had defeated the odds since birth. Who spent her first 2 years of life in a hospital room more than her own home. Who will continue to have a relationship with the medical world I wouldn’t even want to imagine. Who overcame the dozens and dozens of obstacles placed in front of her with the biggest smile on her face. A young girl who knows what loving unconditionally means and is more than willing to spread that love to others who come around her. A girl who is defining her life with positivity, not pity. 

And pass that knowledge on to your children. And your family, maybe reread this for yourself. The last thing Alyssa needs is pity. She needs acceptance so we can break that stereotype that with these children comes some type of misery or loss. See her for who she is, not for what you may think she lacks. 

“Would it matter?”

It did, at the time, or so I thought. 

When I meet people, the first thing I usually talk about is my daughter. I’m so proud of her. It’s instantaneous. And then I usually get the same responses, almost every single time, and they go like this: 

“Oh my gosh, I’m so sorry. God sends children like that to special people.” – you don’t feel like that everyday, trust me. 

“Did you know before you gave birth?” -yes I did. And it was difficult. It created a lot anguish in my private life. 

But let me tell me what really went through my mind. 

The blood test at 18 weeks, to test for abnormalities, I skipped, because I wasn’t feeling well that morning. I decided I’d just be back for my ultrasound in 4 weeks. But had I taken it, the only difference is, all these emotions would of started 4 weeks earlier than they actually did. 

When you’re alone, pregnant, no direction in life, and then you’re told you will be caring for a child that will have special needs, and honestly there’s no speech that you will hear that will truly prepare you, two worlds came to my mind: abortion, adoption. 

Yes, I thought about it. Daily. I was not ready, I couldn’t do it, I was embarrassed. And as much as you may judge that sentence, that’s real life. That was my life. I was embarrassed I couldn’t seem to create a life without mistakes. 

Then I thought, okay I won’t have an abortion, I’ll just give her to someone who will want her. And again judge as you may, but I wasn’t sure I would want my child. I can’t sugarcoat those feelings. They’re so real. And other moms need to know that those thoughts, in that moment, can’t be controlled. 

But as I calmed down, weeks later, I knew I could do this. I could be proud, I could love her. And oh my gosh. 

When she looks at me. And she’s so proud, and she’s so happy, and she reaches to hug you and give you Eskimo kisses, my whole world makes complete sense.  I thank God for reaching out to me when I prayed for an answer. I asked “why me?” more often than one might imagine. 

And He reveals that to me daily. 

Because I’m enough for Alyssa. Our love, and our bond is unique. It’s the most powerful thing I’ve ever felt in my heart, in my bones even. 

Fear is okay. Fear is an emotion that made me think several different thoughts, some extremely uncomfortable. But I was in that space. And I overcame that. And everyday I would do it again.

And again. 

Four years 

….
It’s been four years. Just typing that sentence takes me back to that space, that moment. 
The moment they told me you had two holes in your beautiful heart, it was only January of 2013.  The moment I collapsed into the chair and the nurse just hugged me. We had already been there for over a month. And now we knew. But you were too little, and too sick from other complications, to operate. We had to wait. 

Fast forward to April 28th. The day before surgery your family came to meet me in Tallahassee for lunch at Cracker Barrel. Then I cried saying goodbye, because I was terrified of what the next day held. Nana and Aunt Kit Kat came back to Gainesville with me. I decided to take a nap that afternoon. I knew exactly what I wanted to do. 

You were almost five months old. You were still so little. I had heard the surgeons name several times during our stay in the NICU. I heard so many great things about him. You were first case April 29th. 7am. I knew that meant I had to hold you all night until they came for you. I thought the nurses were so annoyed with me. You were intubated and had so many chords, but once we got you settled in my arms, we didn’t move. I knew surgery would be 8 hours long. I knew I would be sick waiting. I knew I would be exhausted. I knew I would terrified. I was so worried you weren’t strong enough yet. I could barely let you go when they came. 

My one rule that morning for myself, nana, and kit kat: Do not let her see you crying when they take her back. I didn’t want that to be your last image. Then the doors shut to the OR. I missed you. 

And you proved me wrong. You were strong enough for this since you were in my tummy.  

You gave us scares. You gave us hope. And the surgeon gave you a better working heart with two little beautiful patches in it. How do you thank someone for that? For saving your life? 

Thank you Dr. Bleiweis. Thank you Shands. Thank you for the heart team. The nurses. Everyone. Anyone. 

Happy heariversary Cupcake. We love you so much. 

Thy Will Be Done 

This song. 

This song is everything.

I can’t find a way to forgive myself. I don’t think I ever will. And because I carry that guilt it can run over into my overall outlook on life.  

In general, I’m happy. I’m happy with Alyssa’s progress. Her routine. Her schedule. Her life. I never wanted children. But then she was here. And I’ve never loved someone so much. I still don’t know how it’s possible. And I get to love her. She loves me. And God thought I deserved that. And I’m eternally grateful. 

Do I know it could be worse? Yes. But does that mean I wake up and say “Thank you God for just making Alyssa paralyzed and dependent on medical miracles for a chance at normal life!” No. But with time will come understanding. 

And this song is always a step in the right direction. It’s great meditation. Sitting. Listening. Talking things out in my heart. This is His will. This is out of my control. Instead of focusing on the negatives, the mourning, and the guilt, I can focus on all the positives. And trust me, the positives outweigh the negatives. It’s just learning that separation. 

Alyssa is everything pure. Everything beautiful. And everything right in my world. I don’t remember life without her now. I don’t want to know a life without her. I have my purpose. I have my Cupcake. 

https://youtu.be/Dp4WC_YZAuw

Protect Her

Some days are good, some days are bad, and some are just disheartening. Being parents of a special needs child can bring great faith or great disappointment in the facilities we become acquainted with; however, your dealing with humans, which you have to constantly remind yourself. Mistakes are inevitable. No one is perfect. You can only hope that everyone is making a conscious effort to try their very best every day.

Today we got a phone call from the lab at our local hospital, before I go into too much detail there is a story! Alyssa was diagnosed with hypopituitarism 3 years ago during an unexpected one month inpatient hospital stay. The endocrinologist at the time decided that taking nightly injection of the growth hormone would greatly improve her overall health, which it did! She was growing, finally, as well as acting more appropriate. Fast forward to this year, we met her NEW endocrinologist. We did routine labs and noticed her growth hormone level was extremely high, so we lowered the dosage, but he also mentioned her cortisol levels were low, and historically had been. Since this was concerning to him he ordered a stimulation test for Alyssa on February 10th. Fast forward to yesterday, March 20, I called asking about results and how much longer we should be expected to wait, but this was all on an answering machine.

And then, today happened. I get a phone call from the lab manager stating the labs were given to the courier, but they cannot find them. ANYWHERE, They tried tracking them down, but no luck there. And today, it was disheartening. I had to hang up and cry. Its instinctual to want to protect your child, but I’m in a position, as well as other mothers, to try to protect while trying to trust others in doing their job perfectly, in order to help you feel validated. But, we live in an imperfect world. Alyssa has always been a hard stick. Getting blood or an IV started on the first try is always a true celebration. This wasn’t the case during the stimulation test, but it also wasn’t the worst experience we’ve had.

Its hard to feel like I am doing my job properly when I can’t protect my sweet cupcake from the little things. I feel so guilty having to reschedule the appointment. I feel so guilty putting her through all these things. I feel so guilty, when she starts crying or getting nervous, and I have to tell her to be strong, because this is it. This is life, but it seriously makes our hearts ache, because she is such a great little girl. She has such a great attitude. Appointments, therapies, pokes, labs, and new faces all the time. I feel so disappointed, but to be honest, I’m truly not surprised. I just wish the mistakes of others wouldn’t result in such negative news, and negative experiences for our sweet baby.

Here’s a belated picture of our sweet cupcake on St. Patrick’s Day.

IMG_1146.JPG

 

Sweet Dreams 

Dreams can be absolutely magical. My most favorite dreams are the ones where I can hear Alyssa calling my name and excitedly telling me a story, or when she is running up to me as fast as she can to jump in my arms or pull at my pant legs to get my attention. I love these dreams. I hold onto these dreams. 
Are dreams premonitions? I could only hope, but they could also be the answer to my prayers. I used to pray for the material things, begging God to let me see Alyssa walk one day or to at least let me hear her call on me, or tell me loves me. But at 4 years old,  I understand these things aren’t part of her journey right  now. I can feel her love. I can feel her happiness. She signs “Mom” and “Dad,” she’s extremely expressive. And she can roll right up to me when she’s using her standing wheelchair, so it works, and I am thankful. But He knows those desires lay deep in my heart. And when I fall asleep at night, He let’s me take a peek. 

Those are my most favorite dreams, of my most favorite girl, being absolutely free. 

Goodnight cupcake. 

Holland

One of my, almost daily, struggles is jealousy. Sometimes I wonder why my “moment” was taken from me. 

When I was about 23 weeks pregnant I went to an ultrasound appointment with my mom and older sister to reveal the gender of my precious baby. And it was a girl! But there were some “issues” with her ultrasound. 

That day was the day I was told she had spina bifida along with some other abnormalities they spotted. I stayed in bed for what seemed like days. I took a pill the doctor prescribed for me that was safe for me and baby so I could sleep. I was in school at the time, I stopped going to classes. My moment was completely ripped from me. The most exciting day of my life suddenly became the worst day. The day I wanted to forget. The day I wish was completely different. 

Now, even when my heart is so full for my friends and the beginning of their pregenancies it’s really difficult for me. I’m confused as to why their story couldn’t be mine. The beginning was plagued with depression. Of course I never wish for anyone to watch their babies go through tough times, but why did I have to? Why do I still continue to struggle so much? 

Finding happiness with birth announments can be difficult for me, and it’s hard to admit that, but with that comes a chance for me to stop and pray. Ask God to forgive me for questioning, forgive me for those moments of jealousy, and it renews my gratitude for our journey. 

I read a story in the NICU four years ago and it has always been on my mind since, it’s called “Welcome to Holland” by Emily Perl Kingsley. It’s about adjusting and mourning. I encourage anyone who takes the time to read this blog also read this article also. 

Love always ❤

http://www.ndss.org/Resources/New-Expectant-Parents/A-Parents-Perspective/

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

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.