I didn’t expect nor hope for a child with special needs. It hadn’t ever crossed my mind, quite frankly. Raising a special needs individual ‘”happened to other people” so it hadn’t ever been a concern of mine. My first child was exactly how I had prayed for. She was born with gorgeous brown eyes and beautiful, curly blonde hair. I was already experiencing trouble in my first marriage and I prayed for a daughter/son who would just love me and want to learn from me and appreciate what I had to teach him or her. (Yes, an out of place prayer, but at that time, that is what I dreamed of).
My first daughter was born. “Small but mighty” was her nickname as she came into this world at 5 lbs and 11 oz. That nick name has held true as she is smaller in stature but HUGE and MIGHTY in her heart. Her milestones of talking and potty training were a little delayed, but nothing that I had noticed as she was my first child. She was very repetitive in her speech and easily anxious. Sleeping was a gigantic challenge for many years all the way through her teenage years. Learning challenges reared it’s ugly head early on. Eventually, at age 11 we finally were given a diagnosis of 22Q11.2 Deletion Syndrome, known as 22Q. This syndrome was also known as DiGeorge Syndrome and Velo Cardio Facial Syndrome in years past. Now it is known that the cause for all of these are from the 22nd chromosome on the Q arm. Thus the new name 22Q. This syndrome has a wide spectrum and effects individuals differently from person to person. Therefore, we didn’t know how this syndrome would affect our daughter.
Remarried to a very supportive man and a loving father figure to my kids, we researched and sought out help wherever possible. I really was hoping to find that “crystal ball” that was going to tell me how my daughter was going to turn out. Would she have seizures? Would she have mental health struggles? Would she develop heart problems? Would her immune system stay on track? Would she ever be able to learn like her peers? This is what is is like to raise an individual with special needs. It is having many more questions than answers. It is always wondering when the “other (health) shoe will drop”. It is being incredibly flexible and creative with how your child progresses in life. It is thinking on your feet. It is being the referee and advocate in your own family as well as with professionals that treat your child.
I have likened my life to being a ping pong ball. I am never quite sure which way I am going and often feel out of control. Sometimes the hits come hard and knock me off the ping pong table and sometimes the routine of going back and forth across the net brings a sense of calm. I am learning to become light and airy like a ping pong ball. Living a life that involves supporting a special needs adult requires a sense of humor (lighthearted-ness), have I mentioned flexibility?, and being filled with air, or a sense of joy. There are days that I want to run and just go live my life that I had envisioned so many years ago, and then within minutes of having that thought I am homesick for the family God has blessed me with.
The truth, for me, in raising an individual with special needs is that it is exhausting, thrilling, demanding and filled with immense love. I am choosing to be the ping pong ball….light and airy and flowing with where life leads us. It’s admitting that I can be crushed if I am not taking care of myself, but realizing the resiliency I have to get through every day and calling it a success. Its measuring success in your child/adult child in ways the world does not. It is networking among your contacts and professionals you know like you’ve never networked before. It’s building a community around your loved one in a way that would support them in case something happens to you. It’s teaching them how to master life skills again, again, and again. It’s beholding the amazing contribution they give to this world and how blown away you are by that special gift….regardless how small. It’s having faith. It’s having faith. It’s having faith. Plus, it brings the term “mama bear” to a whole new level. Can I get an “Amen”?
Are you just starting your journey with your loved one who requires atypical support or are you in the middle of it all? I’d love to hear your story. I encourage you to breathe, choose to be the ping pong ball that is light and airy. Choose to know you serve a purpose that is bigger than you could’ve ever imagined for yourself. Know you are important. With out you, there wouldn’t be the family you love today.
Need some inspiration? Check out my daughter’s blog @ www.MyJourneywithGod.org