How do you deal with such a big deal?

Short answer? Alcohol. I'm just kidding. We've had the pleasure of being complimented on how strong we are as parents. How we handle each new situation, surgery, and/or procedure with what appears to be ease. 

Truth be told, it's a cover up, what you see on the outside simply does not compare to what is actually happening on the inside. The turmoil of every possible bad thing that can happen is slowly rumbling up inside us like a tsunami that no amount of technology could detect coming.  

It's hard to sit in a room with machines and doctors while listening intently as they describe the latest test that needs to be done to determine the diagnosis and prognosis of your child, knowing there is not a single thing you can do. I honestly think that's the worst part, the part where there is not one single thing you can do. You can't change it, you can't take the pain for them, you can't undergo the treatment for them, nothing, not one single thing you can do. But, what we can do, we will do. We put on a brave face, because while she is in room too she looks to us for reassurance, but just as much as we don't know, she knows even less. 

We do what we can as parents, give them reassurance, put a smile on our face when we don't want to, make the experience as best as possible for them, say all the prayers, and ensure her supporters of family and friends are praying along with us. 

Her diagnosis is a big deal, but how we deal with it is up to us. I want nothing more sometimes than to curl up in a ball, hide in the corner, scream and cry it out until I have literally cried out all the water from my body, but what will that do? In the end nothing, it wouldn't even make me feel better. I would feel exhausted from the crying, I would feel awful for having caused more anxiety to my daughter and everything that she has to endure and I'd feel ashamed for not being brave enough to deal with it all. 

Please don't misunderstand, I do have my "break" moments, you know the moments when it all becomes too much to bear sometimes and I do cry in a little ball in the corner. Those brief moments are necessary but they don't need to be known, I make sure my daughter can't hear me. I have my man to lean on for these moments and then I look to him for reassurance. 

I know it's not easy when your child has to go through any type of pain but having a plan in place to deal with these experiences can help. Here are some possible plans; surround yourself with a circle of loved ones that you can freely vent to, prayer is always a powerful way to handle things, having a spot to cry it out comfortably, even having a journal to write it out can help immensely. 

Thinking ahead of ways to help them deal with situations could help to. For Valencia for example, any time I know she has a big important doctor visit coming up, I do my best to change the way she views the visit. When I know we are going to Scottish Rite, the visits usually take up a large part of the day, but whenever we are done we play on their playground, grab lunch at a new spot, and visit one our favorite thrift shops to find a new treasure. I take the time to discuss the visit with her, answer any questions she may have and reassure her that she isn't going through this alone, Mom and Dad are right there every step of the way. 

Always reach out if you find yourself unable to deal with these really big issues, it helps to talk about it with someone else that has been there too. 

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

Growing Pains

 A new concern means a new doctor    

Valencia is now five years old and growing quickly, maybe a little too quickly. At her yearly check up her pediatrician noticed how fast Valencia was growing and became concerned. Not worried but just concerned, with doctors' the difference between those two words is big. I prefer the later. He requested a referral for us to go see an endocrinologist. Endocrinology is the branch of medicine concerned with endocrine glands and hormones. Off we go to another doctor with new tests. 

As a mother, or rather a person in general I've always had this fear of the unknown. I am a deep firm believer that knowledge really is power, that's one reason why I love teaching so much. I am a continuous life-long learner. The more knowledge I have about topics the more prepared I feel. It helps to ease my anxiety when new situations come up. I'll be the first person to take a deep dive into research and absorb all I can about a new topic. For example, I have a very deep rooted fear of spiders,(IYKYK) I now am very aware of how many species exist in the world (45,000) and how many of those are jumping spiders (4,000). This new found knowledge did not help my fear, shocker I know, hello 45,000! but it did allow me to be more aware of the different species thereby keeping me prepared and ultimately easing my fear level from dead on sight of spiders to just running away from them instead. Do to this research based fear I now know the most random things about the most unusual of topics. I'm a lot of fun at trivia nights, lol. This ridiculous fear aka unnecessary skill kicked in handy for this new physician.

I dove head first into what exactly endocrinology is and all possible reasons for having to see one. Since I knew her physician's concern was her growth chart, I had a feeling her condition would just be monitored. Again, knowledge is power and it helped to walk into a new visit with some background knowledge. 

The testing for the endocrinologist wasn't so bad, a blood test and an X-ray was what he needed to let us know that she has premature adrenarche. "Adrenarche is a lot like puberty; it's characterized by changes in the body as your child enters her teen years. Premature adrenarche is when these changes begin early, before age 8 for girls and age 9 for boys. It's usually nothing serious, simply your child's body maturing in its own time." Children's Hospital, 2023. Basically, her physical hormones and bones are growing faster than her actual age. So when we said she's growing fast, she literally was. This new diagnosis would have to be monitored through X-ray's every six months but that would be the extent of this treatment. New doctor added to Valencia's team ✓ and this doctor would prove to be a saving grace in the months to come, I just didn't know it yet. 

Waiting for Endocrinology

Empathy or Sympathy

Let me ask you a question. When you look at someone in a wheelchair, what do you think? Genuinely, what do you REALLY think? Are you filled with sympathy? Do you wonder what happened that got them there? Do you think, I'm so glad that's not me? Maybe you think, how can I help them? or tell yourself not to stare and not to ask what happened because it's none of your business after-all. If I'm being totally honest all of those thoughts were mine at one time or another...BEFORE, before I now know the answers to those questions being on the other side of those thoughts. 

It's easy to wonder, people in general are the curious type. It's not o.k. to ask though, believe me when I tell you how truly offensive it is to have a thought that something is "wrong" with the person sitting in the wheelchair. Truth be told there is nothing wrong them, none, of them. You don't ask a person that drives a Ford what's wrong them because that's how they get from point A to point B do you? So, it's no different than those that use a wheelchair to get around, nothing is wrong with them. They don't want your sympathy, no need to feel sorry for them, for most they have come to embrace their way of life. Empathy, however, empathy, is welcome. It's easy to look at someone who in your opinion has to do things in way that may seem "harder", but who's to say it's really harder for all you know walking around Disney World in Florida heat may seem "harder" to them than sitting and enjoying the ride. 

It's important to remember to emphasize with all and sympathize with none. Hold a door open, step out of the way perhaps, but don't look down on (pun intended) those that use wheels to get around, as we've grown to learn it's "wheel-ly" not a bad gig after-all. Have questions? Please feel free to ask. It's a safe space here to ask the questions you might not feel comfortable asking anyone else. 

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. 

First steps, can't be?!

3, that's how old Valencia is, just three years old. Already she has endured so much, casting, bracing, surgery, testing, you name it she had it. She had a medical record file equivalent to an eighty year old. She had a file full of all the things that make the next milestone possible. Valencia would soon be walking!

Up until now, Valencia hasn't walked yet. She didn't really have an opportunity to learn how what with casts, braces, and surgeries her legs were never really "free" long enough to learn. Developmentally we knew she would be behind, but considering everything she had to go through we were never really sure if she'd be able to walk or how well. Imagine our surprise to see her just kind of take off one day. She remembered the feeling from the dinosaur walker and she did it her way, Valencia's way. 

Now, it's awesome to be able to tell you that we have had both then and now an amazing village of supporters through all of her trials and successes. This was no different. I remember walking into work all excited to share that Valencia took her first official steps on her own, everyone immediately cheering, except for one. This one particular mom had a baby around the same age as Valencia and upon hearing of my news made the statement, "She just started walking at 3?, my daughter was 1 when she started walking." Y'all I'm not ashamed to say that I saved her life that day. Tehe.🤣 Just no sooner she said those words my village of supporters were ready to jump and take her down! They were shocked that anyone would be so oblivious to the fact of exactly how monumental this moment truly was. I stepped in the way of them and said wait, maybe she doesn't know all there is to know about Valencia and her trials, let's give her the benefit of the doubt. We've worked together all year, and anyone who knows me knows that I share pretty much everything about V, but hey, some people like to live in their own bubble and forget there is a whole world with other people in it. 

Yep, it was a double victory kind of week, Valencia started walking and I was out there saving lives. in the words of Ice Cube, "today was a good day." 😎

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. 

 We are "WALKING" and "ROLLING"

Fast forward to when she is 2 years old and she still isn't' walking, crawling sure but walking no. She would get around however she found a way and she was still small enough to be carried around or put into one of those little umbrella strollers when necessary. Until one day...

My mom and I used to love to go to garage sales, so we would do that on pretty Saturdays whenever we could. Well we came across a little dinosaur walker that doubled as a seat scooter exactly like the one pictured below, she bought it for like $5.00. When we got it home we cleaned it up and put it front of V. We showed her how she could scoot on it and then showed her how she could use it to push it, (she used to knee walk so we thought she could push it instead of use it as a "walker" since she wasn't doin that yet) or so we thought. She stood up using the dinosaur walking and took off walking, just like that. No walking behind so she wouldn't fall, no stumbling, nothing. She stood up and walked with that little dinosaur everywhere around the house. My mom and I just stood their in disbelief tears rolling down our cheeks because this was the first time we saw Valencia using her legs to walk. We were stunned and completely happy. 

That little 5 dollar dinosaur became such a blessing to us that day. Valencia was walking, with a walker (per se) sure but she was still up moving those little legs they way God intended. It was a beautiful day and one we do not forget or take for granted. One thing to remember when dealing with a disability is that you always need to focus on the abilities. The little points of movement that otherwise weren't there, the smiles that can come unexpectedly, just the small victories that most can take for granted. Yes, we've been walking and rolling through our abilities ever since. 

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. 

To ask or not to ask, is that even a question?

Valencia was once asked by a fellow student "what's wrong with you?" without hesitation she responded with a "nothing, what's wrong with you?" I turned my face and giggled, I was both amused and proud of her response. 👏 We never discussed how to handle situations like this so her response was genuine and funny. If you know my daughter then you know that her heart is sincere. 

It did raise an interesting point however, how should one ask about her journey? 🤔 Whats the proper way and how do we welcome the conversation. We have no trouble discussing her journey but the way it is asked can be critical in the return response. 

Here are the best ways to ask should you wonder about anyone's health/ life/condition.

• Would you tell me about your journey? 

• What happened?

• Was she born this way or was there an injury?

Here is how NOT to ask unless you want the south side of where G and I come from to come out!  

• What's wrong with her? (Side note: nothing)

• Did she fall or something? (Yes, this has been asked)

• She can walk why does she need a wheelchair. ( insert eyeroll here) 

Remember that with most disabilities or families with disabilities, we are more than willing to share and discuss our stories (ie. Our blog). What we are NOT willing to accept is the fact that someone may think that there is anything wrong with them, because there isn't. They were made special, beautiful and different BUT not weaker! Ask away.