It takes a village

Valencia is gonna go to big kid school

Valencia is headed to kindergarten, big kid school! I'm excited and happy about this new milestone. She's gonna go to the same school as me, so it will be a lot easier in the mornings and I'm there should she need anything. It's gonna be so great!

One small, teeny, tiny issue. Our campus is large for a five year old, especially for a five year old that doesn't walk well for long distances. She can walk around a classroom just fine but to ask her to walk from the classroom to specials, (ie. PE, Art, Music) and to and from the cafeteria, is a difficult task to ask. She needs a wheelchair. Oh, my goodness. I have sooo many thoughts right now;

    

• How do we get her a wheelchair?
• Will it be made in time for her to begin school with?
• How much does this costs?
• How are we going to do this God?

I'd like to say that I'm a sane parent, I don't panic, I don't cry out in stress, I don't worry about things that I have no control over. Psst, who am I kidding? Yes I do!! and in this moment panic and pain were real not just some mythical greek creatures made up to tell the story of Hercules.

We got Valencia measured for her wheelchair and it has to be made specifically for her due to her body and her needs. Insurance can cover a large portion but our out of pocket quote had us in shock. Our out of pocket portion was gonna be $5,000.00. Now, many of you might not know this but we do not receive disability benefits for V. The government states that I make too much to be eligible to receive any kind of assistance for her. I won't bore you with my soap box on the disability drama for now (saved for a later post) but needless to say we weren't gonna be getting help there. We were on a time limit to pay the out of pocket amount because her wheelchair had to be made in time for school to start so we only had two months. Enter her village, someone suggested starting a go fund me. 

We are huge proponents of our daughter, so our responsibility. Asking for assistance was never one of our go to's so this option was messing with us mentally. Up until this point we've been able to provide everything Valencia has needed and wanted so realizing that we couldn't provide one of her major needs was difficult to admit. We ultimately had no choice, our time was running out and her wheelchair needed to be ordered ASAP. I did it, I created the go fund me and put it out to our social media platforms. When I say within 24 hours, literally 24 hours of us creating the go fund me, we had the money raised. 

God did it, he showed us to trust him as always and he would provide. Even now 7 years later as I type this I'm in tears thinking of how people who I hadn't spoken to since high school donated, people who I only knew through social media donated, people who I know didn't have much to give still donated what they could. I stay in amazement even still. 

Thank you again to her village, for providing when we couldn't, for helping when we needed it, for continuing to support V even though it means just reading and sharing her story. Thank you, truly. 

We payed our out of pocket, ordered her wheelchair, V inherited a new nickname and we inherited a new worry. Everyone say hello to Nascar! 

Her first day in her wheelchair

Inclusion - Delusion

I guess I was naive, and didn't know it. Ha, that's literally the definition of what it means to be naive, but I was. I never once thought that someone would be excluded, shunned, or left out because of their inability to walk. I enjoyed my bubble that I was living in but I needed a wake up call, enter Valencia into Pre-K. 

Now, for those of you that may not know, I became a teacher to be there more for my daughter. I had been with my previous job (medical billing for a major hospital) for ten years and I was working my way up the ladder. It was however, time for a change and teaching offered me the opportunity to not only enjoy what I do but be there for my family more.  As a teacher your babies are allowed to attend the same school where you teach, at the time however, my campus didn't offer Prek 4 so I was forced to find an alternative. 

I was very sad about this because she wouldn't be with me and I would also have to pay for Prek, enter the tears for real, because if you have never had to pay for PreK then let me tell ya, it's not cheap $$$$. I was excited when I did realize though that the same school I went to when I was younger for after school care, offered PreK and they had an opening...this is perfect! It was perfect for the most part, there were a few hiccups which the daycare said they would be willing to work around. For example, V was walking (see previous post) but she would not be able to walk for long distances and would walk with a little limp. We didn't have a wheelchair or walker yet as we were still learning her condition and what all she would need. The school said they were o.k. with that and would provide her needs for her. I felt comfortable and excited for her to try their homemade biscuits and gravy (IYKYK 😉). 

Valencia's PreK picture

So, she went through the year and overall it was successful, they even moved her up a class because she was doing so well. It actually wasn't until we got to her graduation ceremony on her last day that we noticed something wasn't right. Her teacher walked up to the stage with her hand in hand but we saw that they didn't take into account Valencia's inability to stand for a long period of time. They didn't provide a chair next to her classmates or even allow her to sit at all, instead they had her stand against the guard rail and then didn't move her classmates next to her, so, Valencia was separated in essence from everyone else and just off to the side by herself. It was disheartening and made me question her entire school year and if she was mistreated throughout the year. I was sad but did not say anything as it was in the middle of her ceremony and didn't want to make a scene, also, this was her last day at this school. I learned a valuable lesson that day, that as a mother I have to live with but use the practice to best advocate for my daughter. Inclusion is a delusion, just because it feels like everyone should be automatically included it doesn't mean they are, either out of ignorance or shear unwillingness, I made sure it would never happen again. 

I would like to point out however, that this was an isolated incident, when I moved her to my campus the following year everyone and I do mean everyone on campus students included, loved on Valencia and accounted for her disability that made her feel safe, included, and thought about. This is how it should be and how it's been ever since. While I have had to advocate and educate on some occasions for her needs never have those requests been met with resistance or unwillingness. 

Remember parents advocacy means educating on what your child's needs are not treating ignorance with rudeness. 

What's the motto? Nothing what's the motto with you.

The story behind our motto is simple, just because you were made different it doesn't mean you were made weaker. 

Valencia is now four, it happened before we knew it. She is now a curious, happy go lucky, little girl walking around everywhere. I remember the first time I got to chase my daughter through the grocery store. I remember knowing how frustrated other parents would be actually having to "chase" their child around the store. I didn't feel that way though, I was filled with gratitude an abundance of gratitude for getting to experience this. I never knew if I would be able to. I knew I'd be excited at getting to experience things that were other parents "normals." We soon would realize that our normal would always be different and that would always be o.k. with us. 

I always knew our "normal" would be different. In fact that's the core value behind our motto for the blog, made different, not weaker. She would always be different, it's a beautiful thing and I hope that we are raising her to always think that way. Everyone should think like that honestly, we are all made different. We are all unique, He made us in His vision, His way. She was made perfect for us, God gave us her because he knew that we would raise her with his perfect vision, that she is beautiful and perfect just the way she is. 

We are all made beautiful and if telling Valencia's story in some way helps you realize that then writing this blog is all worth it. If telling her story helps you in some small way build up gratitude and teaches you not to take "normal" things for granted than again it's all worth it. Here's hoping that we look at everyone and all of our differences as marks of beauty and not of weakness. 

Heel to the no!!

O.k. so electrocution test over, now we know, some nerves do not allow the brain signals to get through. Imagine giving someone directions over the phone, only the phone disconnected and you didn't know it so you just give the directions anyway only to realize that the person on the other end never received those directions. Yea, it's like that only there is no GPS to get you there. Some signals can get through but not all. Good part of that is she can feel things bad part, her legs don't move on their own. 

One of Valencia's heels was so tight, it allowed for no movement at all, brain signal or not. So, her doctor recommended a heel clip procedure. At first I was like oh "hell no," so they went into the explaining process. They go in and clip the tendon and reattach to allow for more elasticity and flexibility. They have to put her under general anesthesia (which is scary for any parent), I become internally terrified and worry about the healing process from the heel procedure, ha, sorry but the educator in me loves a good homophone*! 

It's an outpatient procedure and I love how the doctor's talk so nonchalantly about surgeries and babies and how this is their norm and it's totally fine. BLAH! BLAH! BLAH! All I hear is we have to put your baby to sleep and cut open her flesh and take apart her heel. I know I'm dramatic but in my mind if I prepare for the scary then I get pleasantly met with the serene. I digress. 

Valencia is a soldier, by soldier I mean the Special Forces. Everything she has endured up to this point she hasn't even cried or whined about. She really is so special. This procedure is no different. They took her in and put her to sleep with ease, she came out of it with ease and even picked a bright color for her cast. Pink, which was once her favorite color now it's blue. Valencia defines strength to me, her resiliency through everything, has changed me in ways she may never understand but her character is totally #goals. 

*words that sound the same but have different meanings

Good to go or so I thought

So she's walking with a dinosaur how awesome I thought! She's good we no longer have to worry, boy was I wrong. As she took those steps with the walker my mom and I could still see there was a problem. Her right foot was entirely on it's side as she walked, like flat on the side. Try to picture it if you can, just thinking about it brings pain to my feet, we didn't know how she was doing it. Didn't it hurt? Wasn't it sore? 

Now the thoughts really got worse, what if she CAN'T feel it? Uh-oh!! You wanna talk about a racing mind, mine certainly didn't stop. I put a call into the neurologist and orthopedic surgeon right away. What happens next is still one of the most traumatizing procedures that she has ever had to endure but, you want to know the really shocking part (ha, shocking - that joke will make more sense in a minute) she doesn't even remember it. The trauma happened to me!!! Allow me to explain. 

After setting appointments with her teams of doctors we went to show them her progress. They were happy but concerned. We had to see the Neurologist, they had to do what is known as a NCV test or Nerve Conduction  Velocity Test. 

A nerve conduction velocity (NCV) test — also called a nerve conduction study (NCS) — measures how fast an electrical impulse moves through your nerve. (hopkinsmedicine.org, 2022)

So, the test is a little different for a two year old though as you can imagine, they have to sedate her, they must get a baseline study for how her nerves react when they are at rest and then when they are not. The sedation part alone to me is bad enough but it gets a little worse. She's asleep and I am holding her while they shoot little burst of electricity through her legs to see which nerves react and which ones don't. This is important because like I said earlier our thoughts were can she even feel her foot pain? BUT, then they have to wake her up!  In order for the tests to be done correctly and for us to truly know the extent of nerve damage that the amniotic bands may have caused they have to WAKE HER UP!! Y'all what?? My heart was saying absolutely not you will not electrocute my babies legs to find out nuthin' ( Yes I spelled that correctly). My brain being more logical obviously than my heart said that it was necessary and they are literally neurologist aka brain surgeons so clearly they know what they are doing. 

Last warning to skip ahead before the trauma part, o.k. you've been warned. 

They slowly wake her up and give me instructions to cross her arms across her chest and to hold her as still as I can because they will be sending electrical impulses through her skin to her nerves and she may feel some discomfort. Um, excuse me allow me to send electrical impulses to you and see how much discomfort you feel but I digress. The procedure continues and my baby is jolted awake while I'm restricting her movement. I'm crying, she's crying, it's a mess and just as quickly as Valencia and I got ourselves into a traumatic fit, it was over. Please don't let the below picture fool you, V and I were not this calm. This picture is for research purposes only. I was too emotional to take a picture of our ordeal. LOL

The nurses were the absolute sweetest and even handed Valencia a homemade quilt to keep that the volunteers from Scottish Rite made. Yes, she still has it and uses it in the winter time. The tests results came back and Valencia did have extensive nerve damage in her legs, which didn't allow for some brain signals to reach them. This is why her legs do not always work the way she wants them too, but as even my logic was able to tell based off the crying she was most definitely able to feel them! 

*they also reassured me that it was just discomfort and not actual pain, no way anyone would actually electrocute my baby

Trauma over, well, until the next story 😉

Bueller?

Life happens sometimes. It's important to understand that if you wanna make God tell laugh then tell him your plan! 

A lot can happen and suddenly, so I apologize for my absence and lack of blog posts. I just wanted to let you know that the blog will be back up and running and Valencia's story will continue to be told. 

Thank you all for your continued support of our blog and Valencia. If raising a child takes a village than I am more than grateful that Valencia has a whole state for her. 

All of this before she's one?!

She had already endured more in her first 6 months than most have in their entire lifetime.

Valencia as a girl's name is of Latin origin meaning "strong or healthy". It derives from Valentinus, a saint's name. It is also a place name for the city on the Mediterranean coast of Spain, known for its oranges.

    I named her correctly. She is strong, stronger than many people I've met. Within her first six months of life, she has already endured more than most have and will endure in their entire lifespan. I am in awe of her spirit whenever we are faced with a challenge. She not only takes it head on but also does it with a smile.    

    So, just to recap we have had six weeks of casts on both legs, six weeks of a Ponseti brace with a bar keeping legs separated, a NCV test and multiple blood tests as well as multiple other tests to check all areas of Valencia's body. Whew! And we are still enduring more. 

    I wanted to take a break from the procedures though to tell about the victories too. V is for Valencia and is V for victory. (Yes, I'm an educator at heart). 

    I remember this day as if it was yesterday cliché to say I know but it's true, because it's one of the happy days. One of the days, we got good news from the doctors and not more procedures or test to do. We got to take the casts and braces off, her little legs would get a break *no pun intended. 

    This was her first car ride home without a brace, a cast, or a wrap. Based off her look I don't even think she believed it! We were excited on this day, it gave a sense of "normalcy" little did we know that our normal would always look a little different from others. It is a life we have learned to love and continue to learn from each day. Things may look different for us but we have embraced it and share the victories as well as the setbacks with all. 

You got a lot of nerve!

I don't have the nerves for this. 

We knew the nerve damage was bad, we knew her legs didn't "work" like others, we even knew that she would always have trouble with her legs. We didn't know how much damage though, we needed to know if she could feel, if the brain signals were reaching her legs, and which nerves were working and which ones weren't. 

I introduce you to the NCV or Nerve Conduction Velocity test. 

A nerve conduction velocity (NCV) test - also called a nerve conduction study (NCS) - measures how fast an electrical impulse moves through hour nerve. NCV can identify nerve damage. During the test, your nerve is stimulated, usually with electrode patches attached to your skin. (Hopkins, 2021) www.hopkinsmedicine.org 

A test that literally shoots electric shock impulses through the skin to see which nerves react and how much damage there is. I know what you're thinking, because I was thinking it too. You're brain just said "wait, so..." Yes, electricity to my baby's legs. I don't have the nerves for this. 

The test began with a local anesthetic given to her legs. They needed a ground base to determine her normal nerve function. I was O.K. with that because it meant she wouldn't feel it, BUT, it would wear off and she would feel the next part. 

I know as parents we all want to take any and all pain that our children would ever feel, anything from a paper cut to a bike fall. We'd take the pain, well, I don't know about paper cuts, those things HURT! LOL. The point is though that the thought of our babies going through pain puts us in a lot of pain and we'd do anything to prevent them from getting hurt. 

My parenting skills were about to be put to the test. I would have to hold my baby girl down while they sent electrical impulses to her legs. It was gonna hurt and the face that she would see would be mine. It was a necessary evil, we had to know just how damaged  the nerves were. I held her tight and prayed so hard that it would be over quickly and that it would provide us with the necessary information. It was over in a blink or at least it felt like that, God was there holding both of us because just like us, he is a parent and doesn't want us to feel pain. He would've taken our pain if he could. 

The test was over and the sweet volunteers at Texas Scottish Rite Hospital stitched Valencia a beautiful quilt that I quickly wrapped her up in and held her tight to calm her down. A week later we got the results, the doctor informed us that the test was a success but the damage was extensive, it was as though someone took a knife to her nerves and cut them off from the thigh down. She could feel touches, pain and numbness. Some nerve signals could through but not all and that is where our journey continues. 

Brace yourself

 Brace Yourself for what comes next

    O.k. whew! We got through casting. Her feet looked dramatically different and that only took six weeks. The amniotic bands that were wrapped around caused bilateral clubfeet and that was just one condition. The casting worked though, I kept saying that to myself because I knew deep down that we weren't done but I wanted what my baby just went through to be over, no more procedures, "We're done right?" I would ask the doctors. I.WAS.SO.WRONG!!! We were just beginning. 

    So, her feet looked so much better but as I stated we were just beginning. She now had to be in what's called a Ponseti brace (named after the inventor). This brace would have to be worn 24/7 for 3 months only to be taken off for baths. When I tell you children are the epitome of resilience they absolutely are. This brace wouldn't be worn by the strongest of men or woman today without a full fit and yet here my 3 month old baby was wearing it daily with a smile. She learned how to crawl with this brace and would just happily mosey around the house, she learned how to sleep on her side while leaning the brace against her crib, she even taught me how to hold her and carry her without a worry while in this brace. Yes, resilience is born in every child and somehow as we grow older we grow out of it, that's one trait that 2020 retaught us for sure.

    One take away that I hope we all get from learning about Valencia's journey is the trait of resilience. We all have it, it's what we do with it that makes a difference. 

Casting Director

Grasping the Casting

After visiting with our pediatrician he immediately referred us to Texas Scottish Rite Hospital for Children. Of course being a Dallas native I had heard of this Hospital and the wonderful work they do for kids, never did I imagine we would become a Rite Family.

You can imagine the fear, shock, thoughts, that were circulating through my head. I didn't know what to expect. Valencia was born with her legs so twisted and wrapped in the bands that her legs were so misshapen and we weren't even sure if she could feel them. I remember keeping them covered even back then, I didn't want others to look at me in judgement. They didn't know that her pregnancy was normal up until she was born, they didn't know that I was dealing with daily guilt thinking that I caused this. They didn't need to know and by they I of course mean strangers, Valencia has had a village of supporters since she was born, they never judged, never questioned, just helped whenever and wherever needed. I tear up when I think about the amount of support we've had, the hugs, prayers, money, and time that everyone has helped with is nothing short of a miracle sent to us from God, he knew we were gonna need it. I digress, back to our Scottish Rite initial visit. 

 We got a call a couple of days after the referral to schedule an appointment. They make everything as smooth as possible for the families, I guess they know that we are freaking out on the inside. I mean wouldn't you? My mom of course accompanied me to her visit and every visit their after, I am so grateful to her. When we arrived Valencia was only 1 week old and after x-rays, ultrasound and numerous physical assessments, we were told the treatment plan. 

She would need to have full leg casts on her legs for the first six weeks of life with us visiting every week so they can change them out. Each time they would hold her legs in a different way in order to hopefully correct the misshapen contour. She wasn't in pain as far we could tell, she did hate having the casts removed though, it was done by Art and he was so awesome, the vibration would scare V so bad she'd just scream but only for a minute, she's never been a complainer for any procedures and that continues throughout all other procedures as you'll learn about later on. Doctors have always been so impressed with her ability to handle procedures and/or surgeries. 

Her casts gave her middle name Bella a whole new meaning, she would sometimes sound like a bell. When she had her casts on and when you'd pick her up you had to be careful because if you didn't hold her just right her casts would clink together and sound just like a bell. Each time it happened she would smile and if the saying is true "each time a bell rings an angel gets their wings" V has given a lot of angels wings. Her journey continues after the casts were off and each process we've learned so much. 

If your child also need casts on, just remember it is nerve wracking but only to us families, the babies are so resilient and don't even notice them, well hardly, refer to previous paragraph for bell sound! Keep in mind that it is only temporary and that it is working for the greater good of your baby. Feel free to comment below with questions and/or your experience with casting. 

O.k. so now what?

 O.k. So, now what?

You can imagine the shock after realizing that Valencia's legs were so close to being amputated. There were no warning signs. No distress, no pain, nothing. When Valencia all the sudden had to be out and her legs were so wrapped up they were the color of blueberries, with as tiny as she was the sight was scary even scarier if it's your daughter's legs you're looking at. Once her legs began to regain color the relief was overwhelming, but, now what? The questions flooded my mind. Can she feel them? Will she walk? Can it be fixed or corrected? Is the rest of her o.k.? So many questions, but all I could do was listen. I listened to every doctor that came in and would overload my pre-degree brain with words that only google could help me understand. 

I was a new mom with a baby with a health condition (still didn't know what it was) so scared was no where near what I was feeling I was simply put OVERWHELMED. I knew one thing the first step that any new mom has to make and that was to choose her pediatrician. I knew that doctor that saw her in the surgery room was the the doctor I wanted, after all he was the first one to see her legs in their first light so he knew the uphill battle we would be facing. I wanted him. If there was nothing else I knew I at least knew that. I called the doctor's office and they immediately got me in. Apparently he told his office to anticipate my phone call and to schedule me immediately.  I was too excited to know that there was an opening. 

We stayed only two days in the hospital and Valencia had constant check ups while there. I would just listen to all the doctors, I would take notes, I would take pictures, I've always known that knowledge is power but in this instance I had none. I felt helpless.  I only knew I had to get this new knowledge and quickly I knew that our journey was just beginning and I needed to know everything I could so that we would know how to care for and handle Valencia. 

If you are facing the same situation with a child of yours my advice right now is to start a binder, have lots of notebook paper and write down EVERYTHING, questions, notes, what doctors say, everything write it down and keep it all. You will be amazed one day how far your family has come, I'm thankful for my notes and it's helped me with so many doctor visits. 

To amputate or not

We've been walking and rolling since 2010!

Valencia's story begins on the morning of June 4th 2010. I remember I had the day off and I was looking forward to getting a lot of stuff done that day. Valencia had other plans and so did God. They say you wanna hear God laugh then tell him your plans. 

It began like any other pregnancy I went into the hospital and quickly wanted an epidural I didn't want to feel not one single pain. No, I'm serious NOT.ONE.SINGLE. pain. lol. Valencia had other plans again, this little girl has been working on her own schedule since then. 

As I was dressed in my gown and awaiting little girl's arrival I heard a very scary noise. The machines started to beep and make an alarming sound (ya know the kind you don't want to hear when you are plugged up to them) doctors came and and I was quickly told that my baby was in distress and we needed to do a C-section ASAP. I went from calm to scared within seconds, everything was changing. Flashes occurred where I thought about her room and how I spent all that time making everything "just right" as if she'd actually give an opinion about her room lol but I wanted it to feel right. It was Winnie the Pooh and felt like a calming spa that I knew she'd be able to feel the love in. I wanted so much for her to experience it but at the time of the emergency my fear was that she never would. They rushed me into surgery to get her out as quickly as possible, that's when the real root of the problem was discovered. She was out within seconds and her heartrate was back to normal. A new discovery was made that would impact our lives and teach us the power of prayer, pride, and persistence. 

Valencia was wrapped up in both the umbical cord and the amniotic bands that were wrapped around her legs so tight they were nearly cutting off her legs. They immediately started to call in other doctors and began talks of having to amputate her legs. As I lay there unable to move (thanks spinal tap) they were checking her out and seeing what would need to be done. I remember just praying and praying please God keep her legs, keep her legs. I was scared and for the first time among many future feelings felt the first "mom guilt." Did I cause this? Did I do something wrong? The thoughts filled my head so fast I could barely keep count of all the doctors in the room. Let's also keep in mind I still hadn't seen her at this point, when the last pediatrician came in her legs were slowly starting to gain color back. Her legs would be saved.

They wrapped her up and put her next to my face so I could see her, she just licked my face as if to claim her property. Yes baby girl I am yours and you are mine and thus begins our journey.