“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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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. 

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.

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