Will she walk?

The million dollar question.

Probably, yes. But likely with braces, maybe without and maybe not forever or maybe forever.

Now that we’ve addressed that you better GIVE ME YOUR WORD that you’re going to read this TO THE END. Promise?

Some people have just straight up asked.

Some people ask with their eyes but no words come out.

Some people send the “Maggie I walking!” Video to say she will too.

But everyone wants to know- is Dahlia going to walk?

Straight up- her walking is like NOTHING in the grand scheme. To you, it may seem like it’s only 9 months away. To us that’s  270 days of imaging, contemplating surgeries, cast changes and trips to and from Vanderbilt. We are watching for normal urine output, pain, eating behaviors, headaches, soft spot softness and rest routines. We are scheduling physical therapy, occupational therapy and developmental therapy at 3 mos old. Spina Bifida, to me, before I was thrown into it was just about paralysis, too.  You must know now that walking is wayyyyyyy down....

Here on the priority list.

Dollie has myelomeningocele, the most severe type where the nerves are exposed. Her spine didn't close like it was supposed to. Her spinal cord was open and all of the super sensitive nerves that make her sweet little body work were not being protected from amniotic fluid. Basically it creates a whole lotta nerve damage, some of which we won’t understand until later in life. We are worried about the dilation in her brain ventricles and cerebral fluid not draining. We’re worried about whether or not she will have  kidney function. We are focused on if her kidney is draining and waste is getting out of her sweet little body. We’re trying to prevent her from having dozens of surgeries, dialysis, and developmental delays. 

Spina Bifida is not about walking. The videos make you think it is... for us, it’s not. I don’t expect anyone to understand Spina Bifida as I had zero clue when our journey began.  BUT...With it being #SpinaBifidaAwarenessMonth I think it’s important for people to truly understand WHAT it is and what it DOES. Based on where the opening in the spine is can tell some possible future hurdles but what I’ve really discovered is... there are no answers. Nobody truly knows what causes it. Nobody truly knows how it will affect anyone. 

Each level on your spine is responsible for different motor skills. The level that the lesion is at means that those nerves are likely damaged and the motor skills that those nerves are responsible for may not work how they should. Example: L5 is responsible for the nerves in the ankles. If the lesion is at L5, ankles( and more )will be funky. Make sense? But also, Spina Bifida babies have so many procedures that they often become allergic to latex, they typically always have bladder and bowel problems which means they don’t get to eat normal foods, they get the worlds worst diaper rash, typically their hips are dislocated, some have breathing issues, many live life with a catheter.  They spend their lives rounding on not just Orthopedic surgeons, but neurosurgeons, urologists, and the average PCP.

All that to say, it’s not about whether or not she will walk. That’s just like the super shiny gold sprinkles on top of the chocolate cupcake. You know, the cupcake is super delish without them but with them it’s like WHOA. Spina Bifida is a booger and Dollie is a gift that God so beautifully knit together. 

What can you do to help? You can pray for her and love her just as she is. You can talk to me about it but maybe be careful about feeling like you need every detail if I haven’t shared it with you (Keep in mind that this is my child and I am super protective of her). You can reach out someone about Spina Bifida and teach them one little glimmer of what you've learned. You can Be kind to someone who isn’t the exact same as you... skin, sexual preference, disability. You can participate in the walk in the spring time that will help me advocate. You can read this and teach your child the importance of being kind especially to those who may be different... that, to me, is what Spina Bifida awareness is about.

xoxo