July 1, 2013
"What Do You Want to Be?"
“What do you want to be when you grow up?” It’s a common question that adults all around the world ask young children, either out of genuine interest or simply attempting to engage in conversation. “What are your goals? Who do you want to become?”
A firefighter? Or maybe a pilot? How about a teacher or a doctor? Although the answers will vary greatly, I would be willing to bet that not one child in the history of mankind ever responded, “When I grow up, I hope I get to be the parent of a special-needs child.” The path is completely unplanned, wholly unexpected, and when a mother finds herself suddenly facing that daunting role, it can be unbelievably frightening and overwhelming. How can a person succeed at a job for which she is entirely unprepared? The shoes seem impossible to fill.
However, fill them I must! That tiny body with birth defects? Those perfect little lips that are too weak to even make a peep? Those innocent, pleading eyes that look trustingly at the woman whom God has called to fill that role? They all seem to say,
Please love me. I need you! I need specialized care that only you can provide. I need someone whom I can trust to learn about my needs; to make wise, informed decisions for me; to encourage me to become all that God created me to be.
And so I take a deep breath, do my best to set aside my fears and apprehension, and firmly determine to fill those shoes to the best of my ability. I focus with courage on that sweet face and ask, “What do you want me to be?” Perhaps, if I listen closely enough, I may hear that child child say:
I know that you had big dreams and plans for your life. I’m sorry that I’m not what you expected. But please, won’t you become my Student?
As a Student, I need to learn everything there is to know about this child’s diagnosis and condition. I should ask questions. Research. Write down information and terminology that I hear from her medical team. What symptoms should I be aware of? What is the prognosis for her health, for future independence and success?
I need to observe everything about this little guy, and discover what works, what doesn’t work, what makes him content, what frustrates him, what are his preferences? When he cries, what does it mean? What can I do to make him laugh? Even if he is never able to communicate with speech, I should know him so well, that words will not be necessary.
I can't be afraid to try new things. If one position seems to make her uncomfortable, or interferes with her tubes and wires, I can try a different one. For example, when the physical therapist recommends tummy time to strengthen this child's back and shoulders, how can I modify it to accommodate her recent surgery? I can try new foods . . . If one baby formula or food causes her to have an upset stomach or to not grow well, I can ask the nutritionist about trying a different one. I need to be creative!
I should be such an astute and diligent Student of this little guy, that I will detect the slightest change in his health. I will be able to celebrate the smallest achievement, and notice every step on his way to becoming the person God designed him to be!
I love that you are committed to being my Student! And now, as you continue to study and learn about me, you, more than anyone else, will be able to become my Advocate. Please fight for me. I cannot articulate my needs, so I need you to become the voice for me.
It is my responsibility to communicate with the medical team. Sure, they may have the advanced degrees and the years of experience that I don’t have, but no one, absolutely no one knows this child as well as I do! When one procedure doesn’t work, I can ask what they can try next. When one test comes back negative, I can ask what other tests they can order. If I am not comfortable with one suggestion, or discern that it’s not going to be the right fit for this child, I shouldn’t be afraid to ask for alternatives.
As my Student, you know me better than anyone else. As my Advocate, you communicate my needs to the professionals who can help me. And if it’s not asking too much, would you please become my Administrator?
Even if I am not the most organized person in the world, I need to find a system that works for me. I should carry a calendar with me at all times, so that I can keep careful track of doctor’s appointments, medical procedures, therapy visits, team meetings, and deadlines. Every one of them is important!
Every time I think of a question for a member of her medical team, I need to write it down. At the next appointment, I won’t leave until I get those questions answered. I can document conversations. Write down feeding schedules, observations about this child’s health and routine, and even her BM’s. Because I am with her 24/7, I may make an important discovery about her care that a medical professional may have overlooked.
Many hospitals and health organizations have a “Patient Medical Notebook” for parents to use. I should ask the services coordinator about getting one, or I can make one myself. It can include a section for contact info for everyone on the medical team, medications, tests and procedures, immunization record, list of medical equipment and supplies, allergies and dietary restrictions, insurance information, pharmacy location.
This notebook is an indispensible resource for many reasons. Not only does it keep the mountains of information in one location, right at my fingertips, but it can also be passed along to anyone who helps with the caregiving: home health care nurses, babysitters, grandparents, respite care providers, etc.
The notebook is also useful for helping the medical team members communicate with one another. Especially when there are many different specialists involved with this child’s care, possibly from varying offices and locations, they may not have access to each other’s records. As this little one's Administrator, I can ensure that his team members communicate with each other. His cardiologist may not know that he recently had a GI study. His pulmonologist may have forgotten that the neurologist doesn’t want him to take a certain medication. His feeding therapist may need to confirm with his physical therapist the safest position for mealtimes. There are many people who are involved with this child's care, and I can help ensure that they all communicate with one another.
I want you to be my Student, my Advocate, and my Administrator. I’m depending on you to make sure that I receive the very best care possible, and that I have every opportunity to thrive and become successful in this life! To become what God wants me to be.
Sure, it can be overwhelming. Indeed, it is often exhausting and frustrating. No one ever plans to become the parent of a special-needs or medically-fragile child. But once I find myself in that role, I find that I love this child more than I ever imagined was possible. I become fiercely protective, strong, and vocal. The reserved stay-at-home Mom suddenly becomes a resolved Warrior Mama. And it occurs to me that yes, in spite of the difficulties and challenges of raising a child who is uniquely and wonderfully made, I truly wouldn’t have wanted to choose any other path. “What do I want to be?” This. This is exactly what I want to be.