Kicking off Spina Bifida Awareness Month

Today kicks off the first day of spina bifida awareness month.  When I was 22 weeks pregnant, Madi was diagnosed with spina bifida.  I had no clue what spina bifida was and I was so scared.  I felt like my world was crashing down.  I had no idea what it meant for her and the doctor made it sound like a death sentence (literally).  I remember pleading with God and telling him that I could deal with anything He threw our way, but to please let her make it through the rest of our pregnancy and in to my arms.  Not long after Madi was born I realized how much of the story the doctor left out.  Sure, there would be surgeries, therapies, appointments, wheelchairs, etc...., but more importantly there would be smiles, laughter, joy, determination,  and LIFE.  He forgot to tell me the “stuff” would all start to feel normal, and it would all be ok.  Fast forward a few more years and Madi’s diagnosis also brought us Ramya, because we had learned over the years that spina bifida and wheelchairs really aren’t scary.  Now we get the privilege of watching both girls grow, thrive, and live their lives abundantly. I hope by sharing our lives we have helped everyone see that we aren’t defined by our list of “cant’s” (and trust me, every person on this earth has a list in one form or another).  That list doesn’t rob us of our joy or keep us from living our lives to the fullest.  We don’t live life on the sidelines.  We are truly blessed beyond measure.  

Love Makes a Family

As I sit here going through my photos to attempt and catch up on posts (which I never seem to do), one thing stands out above the rest.  Life is messy, sometimes logistic are tricky, and nothing is perfect. Behind the smiles are sometimes struggles unseen. We don't let anything slow us down, though, and we make sure to live life to it's fullest. We try to make each day filled with joy and adventure, even when it's messy. We are so blessed to be going through this journey together. No matter what happens, we always have each other, and it's life's greatest gift! 

Sometimes I Cry

Sometimes I cry.

Sometimes it happens in public.

I am sure some people see my eyes swell with tears and think I am sad, but that couldn't be further from the truth.

When I look at my children, when I see their radiant joy, when I watch them laugh and experience new things, I can't help but be overcome with emotion. 

Most of the world looks at my girls and says "I'm sorry".  But I am not sorry.  They are PERFECT. 

Their life is beautiful.  Their life is worthy.  They love their life.  They are a blessing.  They are truly happy and so very, very loved. 

So, yes, sometimes my eyes get a little teary.  I just cannot help but look at them and feel an overwhelming sense of gratefulness that I get to witness their story unfold, and I get to be part of it. 

God has blessed us tremendously. 

 

Passion

Lately I feel sort of blah, like I'm going through the motions, but like my life is lacking in passion.  My kids are well fed, but I don't enjoy the craft of creating the meals.  My home is clean, but cleaning it feels like a chore, not a privilege.  My prayers and devotions have felt "routine" and lacking in zeal.  I love my family, my life, those every-day mundane things we do and call life, but lately I just haven't felt that passion and joy that I normally do. 

Life has felt busy and rushed lately.  David is struggling at work.  Money is tight.  I've had doctors appointments for myself, on top of what I have for the kids.  Yet there is still just so much to rejoice in; so much to be thankful for.  Tonight I was reading a book I really like called Desperate: Hope for the Mom Who Needs to Breathe and the words on the page really spoke to me, as they often do when I am reading this book.  I rarely cry, yet I found myself brought to tears, because it spoke so well to exactly how I am feeling.  I thought I would share those words with you, in case any of you are feeling how I am.

 

"God lives in my home, but sometimes I ignore Him and don't hear the music He is playing just for me.  This journey of mothering is a challenging marathon of moments, hours, days, months, and decades.  And yet, in each moment, God has sprinkled across our paths beauty, love, and joy.  We have only to cultivate eyes in our hearts to observe this Artist's work of life...  All of these moments and passages have the mystery and grace of God in them, just waiting to be unpackaged as evidence of His love."

 

- Desperate: Hope for the Mom Who Needs to Breathe, pg. 160

 

 

I pray that God will help me to see the joy in all of those little tasks and duties that make up our life.  I pray that I will not only go through life, but that I will live it with purpose and with zeal.  I pray I find the beauty in the mundane and pray that I will be thankful for every little moment I have, no matter how small or insignificant it may seem.  Today I am praying that I live each day with purpose, joy, and passion.

 

 

 

 

 

 

 

 

 

I wish I could express....

I belong to a forum called 'Spina Bifida Connection' that is comprised of parents of little ones with spina bifida, as well as teens and adults with spina bifida themselves.  It is a great support group where you can talk about anything you need to and get answers to any question need help with.  Many times moms who have just been told their baby has spina bifida come on for support.  It is the same story over and over again.  The doctors gave them a bleak outlook and are telling them they should abort, but they want to get more information first.  The crazy thing is, when I hear the specifics on their child, many times the level of their spina bifida and/or form is better than Madis.  Bleak.  Life is not bleak.  Look at Madi's life.  Does that look bleak to you? 

Today another mom posted that she cannot put her child through such a sad life and that she has decided to abort.  I am in tears, and I never cry.  It saddens me that the life of a child with a disability is not seen as valuable and worthy of life.  It saddens me that people look at Madi and feel bad for her.  It saddens me that people think that a baby with her condition should not be given life.  It saddens me that people see it as bleak and painful, and therefore, unworthy.  Yes, life is different, but who are we to judge that it is any less amazing or worthy? 

This is a great reminder of exactly why I keep this blog.  To bring hope.  Spina bifida may not be something we plan or wish for our kids.  Spina bifida may bring challenges, I am not going to lie, but spina bifida also brings love, hope, laughter, determination, and so much more.  Spina bifida brings life.

A big day tomorrow

Tomorrow Madi has a urodynamics test and renal ultrasound scheduled (or maybe a VCUG, not a renal ultrasound; for some reason I just cannot remember!).  These are never fun tests because they require Madi to lay still for quite some time and they can be a bit uncomfortable, even with her reduced sensation.  Madi usually starts to cry before the procedure ever even begins.  Just looking at the tables she has to lay on brings tears.  I always bring snacks, toys, and books to try to distract her, but when your life is filled with appointments and those appointments are often not fun, you know what the real reason behind those distractions are.  You learn it pretty early on, sadly.  One of the hardest things about being a mom is knowing that those tests must endured, but wanting so badly not to have to see your child go through them.  On the other hand, I am so thankful that we have these tests.  It actually wasn't until more recently that I realized how serious urinary problems can be for kiddos and adults with spina bifida.  Madi, thankfully, is followed very closely and her urinary issues are under close scrutiny.  Urinary problems can be very, very serious, though.  Here is a bit of information on the topic:

After meningitis and hydrocephalus, renal failure is an important cause of chronic ill health or death. Early and accurate assessment of urinary tract function will, I hope, prevent later and intractable renal disease, which causes a high rate of morbidity and mortality. This problem must be considered almost as urgent as the associated neurological and orthopaedic problems of spina bifida. http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.1962.tb03173.x/abstract

and

Prognosis varies by the level of cord involvement and the number and severity of associated anomalies. Prognosis is worse for children with higher cord levels (eg, thoracic) or who have kyphosis, hydrocephalus, early hydronephrosis, and associated congenital anomalies. With proper care, however, most children do well. Loss of renal function and ventricular shunt complications are the usual causes of death in older children. http://www.merckmanuals.com/professional/sec19/ch292/ch292c.html

In light of that information, it almost feels silly to get frustrated and complain.  We have so much to be thankful for.  Madi is lucky enough to be born in a time where she can get the help she needs.  As much as I hate these appointments and as much as I hate having to cath Madi and what that means for her, it also means something amazing; Madi is here on earth with us and can live a long, healthy, and happy life.  These tests help her thrive and give her the chance at life that she deserves.  So, while I am not looking forward to tomorrow, I am looking forward, and I am so thankful these tests give me the chance to do so.

In honor of spina bifida awareness month....

They said they saw the 'lemon sign'.

They said she had brain abnormalities.

They said there was fluid on the brain.
They said she had a neural tube defect.

They said she would need many, many surgeries.

They said she might struggle cognitively.

They said she would not walk.

They said we had a "choice".

But they forgot a few things.....

 She would be a fighter.

She would be beautiful.

She would be determined.

Her smile would make everything ok.

She would have an amazing sense of humor.

She would be strong.

She would find a way.

Nothing would slow her down.

She would be smart.

She would be full of life.

She would be full of love.

She would be our super hero.

She would be a blessing from God.

She would be perfect.

Choose life.





"Each child is sent into this world by God with a "Unique Message" to deliver, a new personal act of love to bestow".
- John Powell, S.J