“To know even one life has breathed easier because you have lived. This is to have succeeded.” – Ralph Waldo Emerson

Marchh 30th is National Doctors’ Day.

Where do I even begin?

Because of countless physicians our daughter has defied all odds, I mean I think it’s mostly Alyssa, but I have to give credit where credit is due ūüėČ. I often talk about inclusion, acceptance, and compassion when I sit down to write, because those topics are so close to my heart, and when I think about physicians who have come into our lives, they embody each characteristic. And they thought never hit me until today.

They intervene at Alyssa’s worst times to help her with nothing but respect, and the best intentions. They help her during her good times to make sure Alyssa continues to feel her best and continues on, what I like to call, “her healthy spree.” They consistently listen to us as parents when we have concerns, over all they put up with us as parents. Mostly me, because as we have already established, I’m a helicopter parent and no more needs to be said on that subject.

We have been blessed in every aspect of Alyssas care with amazing physicians. We want to say thank you, from the bottom of our hearts, for being educated, proactive, quick in the time of great need, and dedicated. We can’t imagine a world without you all in it. ‚̧ԳŹ

Also, in the words of Drake “Look what you’ve done.” In a good way.

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Rambling

I feel like I haven’t written anything down in months, but I’m so full of things to tell! Some good, some bad, but its life and its definitely therapeutic to sit on my couch, listen to The Real Housewives of Beverly Hills, and watch Alyssa’s camera, basically an extension of me staring at her all night.

Alyssa has been doing great, she always is. You can throw anything in her way and she overcomes, per usual. We have an upcoming appointment in Jacksonville which we are thoroughly looking forward to, because we absolutely adore their audiology team. She is doing SO well in school! Mom and dad couldn’t be more proud. She has been truly mastering her new wheelchair, but we are warming up to small declines, I’m literally terrified she’ll go flying, and as much as I know Alyssa would be cracking up, I would literally need crack to survive it,¬†AKA Starbucks. She has been spending time with Gigi, Pawgraw, KK and Geeya, her grandparents and great grandparents from Tennessee and New York, so she is soaking up the love.

As for me, my New Year’s resolution is to be more positive, and try to understand I can’t control every situation. Talk . About. Difficult. I have the classic misconception that if I could handle the situation it would be done right and¬†I wouldn’t have to depend¬†on others, but unfortunately for me, Alyssa’s everything is dependent upon others, including my work schedule. I’m still actively learning. Slowly. Very slowly. Ask Mark. So to sum that up, basically a huge LOL.

And my not so favorite update.

As you all may know, I hate asking “Why?” I honestly don’t think it’s appropriate in our situation, and¬†it sets you up for failure. I’m not sure why in traumatic situations people ask that. Its not my business why. I don’t believe¬†her life was a mistake,¬†and I don’t believe a persons physical abilities is what the Bible¬†was defining¬†when it says we are created in His image. Alyssa’s life is so pure and its very rewarding. A struggle at times? Yes, but it is what it is and you find the positives. Quickly. If you don’t look for positives you don’t grow, and she has to learn to laugh it off and grow.

But now I know why. And I hate that. Mark and I (and by Mark and I, I actually mean I had an idea that I acted upon and I was going to eventually catch Mark up to speed) were thinking about having one more child. I want someone to be here for Alyssa when we are gone, and not just¬†as a¬†“caregiver” but a family member, a sibling. Someone who truly loves Alyssa, understands Alyssa, and will help Alyssa fight if she ever needed it. I have sisters and one brother, and knowing they’re in my corner means everything to me. I wanted to give that to Alyssa. So I went to the doctor and started requesting bloodwork to¬†check my levels since they say Spina Bifida could be due to low folate levels, but all my bloodwork was perfect. Literally. So naturally¬†I was referred to a specialist and then that’s when I was told I couldn’t have any more children. I have¬†a gene mutation, and not the good kind, because apparently that’s a thing. And by good I mean the kind that you work around. Yes, I know adoption is an option, but I had to take some time to process the information, and accept it.¬†So here I am, accepting it. And simultaneously stuffing my face with the best gluten free oatmeal raisin cookies¬†I have ever eaten, shout out to¬†Gigi.

Am I actively looking for a surrogate who will use their own private insurance, pay their own hospital bills, and then hand the child off to me once its born? Yes I am so if that sounds appealing to you, you know where to find me.

And on that note, although he doesn’t see these things, Mark has proven to be my biggest supporter time and time again. My best friend. My favorite person. My comfort. He works so hard and sacrifices so much to make sure his girls are taken care of. He listens to me when¬†I struggle through these little bumps in life and I couldn’t imagine experiencing it with anyone else. Here’s to our family of 3. Here’s to the future God has planned for us. And here’s to us raising a strong willed daughter that we’ll never have to worry about.

 

 

 

 

Thanksgiving

It can be easy to forget to be thankful, because life gets crazy, and quickly. This past week was one for the books. We are having private duty nursing issues (a lot of them it feels like,) we are having billing issues from a recent hospital stay, we still have not received Alyssa’s wheelchair which we have been dealing with since August, Alyssa lost her health tech at school and it is¬†unknown at this time when she can return which literally breaks my heart because she LOVES school.

but,

Alyssa is healthy, ¬†Mark is healthy.¬†We have a place to sleep. We have food when we are hungry. We have two sweet dogs (and hopefully a little piggy soon, my little Hamlet) We have amazing families. We have amazing friends. We have a source of income. Alyssa’s journey has allowed us to meet a group of amazing, compassionate people. Alyssa has been excelling in school and making friends. There are SO many things to be thankful for this year.¬† We hope you and yours have an amazing holiday season throughout the ending of this year, which literally flew by. Happy Thanksgiving!

alyssafarm

Some days I would take everything away from you so you could live a free life as a young girl. 

And some days I‚Äôm so proud to watch what a fighter you‚Äôve become. You‚Äôre owning your life and making the very best of every possible situation without even knowing it yet. And that my dear, I hope you always keep close to your heart. 

Alyssa was admitted due to a reoccurring issue, which presented itself very different this time around, so it‚Äôs been a learning experience for her father and I, and in a positive way. Her body didn‚Äôt fall tired too soon to the infection, maybe Cupcake is super woman? The answer is yes, by the way. So prayers and positive thoughts for this strong princess. Just another day in the life of Cakes & it‚Äôs beautiful. 
As for now, nap time ūüôĆūüŹľ

“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. ‚̧ԳŹ

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.

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