My Daughter Can: A Mother's Resolve Through Disability
I was sitting on the sideline watching my daughter participate in her dance class. This is her first year and all dressed up in her leotard and tights, I realize she's growing up so fast! All mothers say that, I know. But I promise, she really is. Her mannerisms are so mature...her jokes are beyond her years...even her speech seems advanced for a three-year-old. Looking at her now, you might not know her small struggle entering and acclimating to this world.
Addyson is my second child...born full-term and weighing in at 8 lbs 15 oz! After delivering a 6 lb 7 oz baby girl less than two years earlier, Addy's size was quite the surprise! I can remember the delivery so clearly...so different from my first. My epidural stopped working a few hours in and the pain was so unbearable that I called for additional medication TWICE. I wish I could have been able to bear through it but I gave it my very best shot so I'm okay with that. Hours later it was time to push and I was ready. It took quite a while to get her moving but I did and finally, her head was successfully out. Unfortunately, that is where things got complicated.
Basically, Addy was stuck. Her shoulders were so broad that it took several minutes and strenuous pushing to finally get her out of me. I recall looking up a my OBGYN...a seasoned man with well over 20 years of experience bringing babies into this world...he looked absolutely terrified! This obviously, did not ease my mind...but it did motivate me to push like my life (and my baby's) depended on it! So I did and by the grace of God, she was out. My doctor later confirmed what his facial expression meant...he said that he'd done tons of deliveries but only a few stuck with him. He said that mine was one of those. He wasn't sure if he was going to be get her out before irreversible damage was done.
The joy that my husband and I felt was overcast by worry and concern when Addy was quickly taken away to be evaluated as opposed to being brought to our arms. Apparently her left arm wasn't moving and they needed to determine why. Now, you have to understand...as a physical therapist with a heavy focus in pediatrics, I was still pretty calm. I realized that if her arm was their biggest concern, we were extremely blessed. Situations like mine could end in far more difficult conditions such as cerebral palsy or even death. My husband, on the other hand, was not quite as relaxed. He didn't get to hold his baby girl or cut her umbilical cord. He was watching me through the most unbearable pain that I've ever felt. He was essentially helpless when his identity and purpose revolve around providing protection and security for his family. It was a challenge to watch.
After Addyson was checked out, it was determined that she had a medical diagnosis of Erb's Palsy due to the excessive force needed to pull her out. Nerves on the left side of her neck were damaged causing her left arm to be essentially paralyzed. Without imaging (MRI) it is impossible to determine how much damage (stretching versus severing of the nerves) has actually occurred and subsequently, how much return of function you can expect to see over the course of a child's life. It was up to intensive physical therapy (provided by yours truly) to see what would become of my baby girl's left arm.
We worked longed and hard, saw multiple pediatric neurologists, considered surgical intervention, followed-up constantly with our pediatrician...and three years later, here we are. She's in dance class. She's taken a few trial classes of gymnastics. She can write, cartwheel and use both of her arms...ALMOST equally. She's right handed...although I'd be willing to bet that she would have been a lefty if she had been able to fully use her left arm early on.
She has acclimated quite well, almost unaware of her very mild disability. As a therapist though, it was important for me to make her knowledgeable and well educated on her diagnosis...not to limit her potential but to encourage her to see beyond it. A dear friend/Sorority sister of mine sent me some great books to read with children affected by Erb's Palsy over the course of their lives. We've read two books in the four book series and Addy seems very comfortable with the topic already. My daughter really CAN do anything other kids can do...but if you look closely, you can see her left scapula (shoulder blade) poking out of her back with the slightest left arm movements. The muscles that hold her shoulder blade down are extremely insufficient. You might also notice that raising her left arm above the height of her shoulder requires excessive recruitment of other muscles which leaves her looking a little 'lopsided.' Additionally, she has issues with supinating her left forearm (turning her palm to face the ceiling) and overall, she's just much weaker on that side. Considering these things, we still work on strengthening exercises to challenge her left arm and upper back strength, but we are proud beyond belief. She's come a long way and we are teaching her to avoid placing limits on herself.
Addy's situation is a common one and while the effects are far less devastating than navigating through a condition that could limit her ability to walk, talk or even breath...a disability is STILL a disability. And it can hurt everyone involved. Struggling through the "what-ifs" and the "whys" and the "hows" can be emotionally draining and overwhelming. Advocating for your child with physicians, therapists and other healthcare professionals can be exhausting. I have experienced this from both sides as a therapist and a parent of a child needing specialized care. Some people literally give up...the burden is too much to bear and other relationships become strained. It's no wonder that the divorce rate for parents of children with disabilities is far higher than the general population. It takes a very resilient mindset to lead your children to success, most especially when they have a disability. And it takes a truly committed person/couple to maintain other factors in their lives as they help their children. It's easy to get consumed and lost in your children's battles, neglecting your spouse, friends, other children, work and mostly importantly, YOURSELF.
So as as I am still embarking upon this October challenge to encourage and help women to STOP and take care of themselves, I offer some specific advice to women/moms (and men/dads) that have children with disabilities...both physical and mental.
First and foremost, TAKE A BREAK. Yup, get some respite care either weekly or monthly where you have the freedom to go out (or sleep in) while someone else manages your child(ren) for you! You are no good to your child if you are sleep-deprived, stressed, unhappy and lacking joy.
Next...research and advocate for your child. Make sure the health care professionals that you have on your "team" have your child's best interest at heart. Don't be afraid to get second or third opinions and always speak up. Ask questions and stay up on current research so that you know what things might be available to help your child and your family as a whole.
Third, be a committed member of your child's team. Once you feel comfortable with the "village" you have in your child's corner, take their advice seriously. Accept that they each have an area of expertise that you do not possess and follow through on their recommendations and instructions. They can only be as helpful as you are serious.
And lastly, avoid further disabling your child by discouraging them from the next challenge, no matter how big or small. If the idea of speaking sounds far fetched for your child or walking or rolling over independently or even competing as an Olympian one day...SO WHAT. Let them keep at it. There's a difference between being realistic and killing dreams. Children are the most tenacious and they are truly forces with which to be reckoned. Their unlimited capacity to dream is what makes them successful and why they seem recover from the most difficult blows in life. So, as a parent, your role should be to encourage and support their dreams as much as you can and within reason. And be there to wipe their tears if/when they fail as well as to celebrate and jump for joy if/when they succeed.
Every child is unique and their struggles are individualized. This is no different for the child with a physical or mental disability. All life has value and if you were chosen to guide a baby through life managing a disability of any type, consider yourself called to a great and high purpose. Remember, to whom much is given, much is required.