God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't take a special family, it makes a special family.

Friday, October 9, 2009

October is Spina Bifida Awareness Month

19 months ago mine and Jonathan's lives changed in a way we never expected, one we never could have prepared for. Brenden had trouble breathing, so was immediately transferred to Winchester. About 4 hours after Brenden was born I received a phone call from Dr. Lee in the NICU at Winchester. He said, "Mrs. Dugan, I'm sorry to tell you this, but your son has Spina Bifida." I tried to search my brain to remember what that was, but like most people, I knew nothing about it. I knew that my doctor had prescribed folic acid before I got pregnant, which was supposed to prevent this very thing. My first question to Dr. Lee was, "What does that mean for Brenden long term?" After a brief pause, he said possible paralysis. In that moment, I felt like my heart was being ripped from my chest, piece by piece.....a feeling I will never forget.

Within just a few hours, my nurse called the doctor back in, and very willingly she released me just 8 hours after I delivered. We all made our way to a place called Charlottesville, to UVA Hospital...a place I knew nothing about. We were told that Brenden would need surgery that very afternoon to close the opening in his back but also to place a shunt to release the fluid building up on his brain. We had the opportunity to meet with the team of surgeons, who explained what they would be doing. After signing the consent forms, Jonathan and I stood by Brenden's isolette to tell him goodbye and say a prayer. I remember holding his tiny little hand and just sobbing....afraid that this would be the last time I would ever get to see him alive.

After a very successful surgery, much shorter than they predicted, Dr. John Jane, Jr. came to the waiting room to tell us everything went very well, they were able to repair the opening with no further damage to the nerves, which was a tough task!! As he walked away, he turned around and said, "There was definitely a higher power at work here!" We all knew that, but to hear him say it was reassurance that our little guy was in good hands.

After many hurdles and a 4 week hospital stay, Brenden, Jonathan, and I finally came home. A place I hadn't been since my water broke. And now, here we are 19 months later. We have an amazing son who makes us smile hundreds of times a day, who is proving doctors wrong. He is NOT paralyzed....he has movement and feeling down to his toes. Although he's not walking YET, we have faith in the Lord that we will one day see him take his first steps. Many, if not most, people don't know the challenges that Jonathan and I face everyday as we help Brenden overcome the obstacles associated with Spina Bifida. From urology, audiology, orthopedics, neurosurgery, neuro-opthamology, physical therapy, occupational therapy....we are giving Brenden all the care that he needs to ensure that he has every opportunity in life.

Spina Bifida does not, nor will it ever, define Brenden...it is simply part of who he is. It is something he will live with for the rest of his life, but in no way is it a death sentence. Sure, he will face many obstacles and challenges over the course of his life, but I assure you, he is one strong willed little boy and I know he will overcome many hurdles! When we were told Brenden had Spina Bifida, we were upset, mad, confused....thinking this was the worse thing that could ever happen. But I was so wrong....though this diagnosis has changed our lives in so many ways, we have gained so many blessings. I appreciate Brenden so much more....he is the most amazing gift God could ever have given me and he teaches me new things everyday. I would not have been a stay at home mom had it not been for the extra care Brenden needs, nor did I ever think I could stand being a stay at home mom....but I wouldn't have it any other way!

This was me then....

And now.....I'm happy as can be!!


Colleen said...

Awesome post! I love it!

Anonymous said...

Hi Sweetie,
I can remember right before you went into surgery, they played "somewhere over the rainbow"on the piano as we went pass, and I knew then that you were going to fine,and look at you now, you are amazing, I am so proud of mommy and daddy also. Thank you for always bringing a smile to my heart.
Love you more every day,

Krista said...

Brendan You are not only touching mommy and daddys lives but others as well. God could not have given this family a more perfect little boy. We love you bunches! Thank you Jonathan and Michelle for being the awesome parents that you are. Love to you all.