A medical mom is a mother of a child with one or more medical complexities. If you want to understand her, there are several things to know about a medical mom.
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Things to Know About a Medical Mom
If you know a medical mom, you know that they are a different breed. They live a different life from other moms in so many ways. Here are a few things to know about them:
Medical Moms Speak a Different Language
Medical moms speak in a different language that includes diagnoses, medical jargon, and acronyms that most of the world has no need to know. This “medical mom speak” tends to seep into every corner of their lives without them even knowing it.
Medical Moms are Organized and Detail Oriented
When a woman becomes a mother of a medically complex child, even if she has always been disorganized, impulsive and imprecise, she will suddenly become extremely organized and detail oriented, especially with all things concerning her medical child. She will need to accurately:
- keep track of medical and therapy visits
- list symptoms
- organize medical records from multiple physicians
- keep daily medication administration records
Medical Moms may seem apathetic.
A medical mom is bearing a huge burden for her child. If she has other children at home, she is also concerned about them. To some, she may seem apathetic about other situations or even disinterested, but she isn’t. Sometimes she simply does not have the brain space or the band width to talk about situations that are not life and death, or are not directly related to her daily schedule and the care of her children.
She prepares for a doctors visit like you prep for a vacation.
For a mother of a medically complex child, a simple visit to a doctor is actually a very complex ordeal for several reasons. First, her child is followed by so many doctors, that she needs to be prepared with her child’s most up to date medical file in order to share information with the doctor. All specialists do not communicate with each other, and it takes less time for the medical mom to assemble and carry a medical file then it takes to records sent from one office to another.
Also, taking a medically complex child anywhere outside the house is much more involved than taking a normal child out. When most moms could leave the house with a diaper and some wipes for a quick trip out, a medical mom needs diapers, wipes, medications, inhalers, feeding supplies, medical supplies, suction supplies, etc.
Doctors visits are weekly. To have a week without one is a treat!
She often knows more about her child’s diagnosis than the doctors.
Doctors see many patients with a variety of symptoms and diagnoses. Yes, that field is narrowed for a specialist, but a medical mom specializes one specific diagnosis and specifically the manifestations of that diagnosis in her child.
Also, a medical mom has only one patient, and she knows everything there is to know about that patient, because she is the primary caregiver for that patient twenty-four hours per day. She attends visits with all of the specialists who see her child and gathers their knowledge and insights about her child first hand.
Sometimes the child has a rare disease diagnosis where there are only a few doctors in the country or the world who are even trained or educated about the specifics of the child’s condition.
Sometimes there is no diagnosis.
Sometimes, a medical mom cannot tell you why her child experiences certain symptoms or “is” a certain way, because she there is not always a diagnosis to be found. New discoveries are made every day in medicine. Trust me, the medical mom wants very much to be able to tell you “why.”
Yes, she is tired, but that doesn’t really mean anything.
A medical mom is perpetually “tired,” not only from lack of sleep, but from the constant anxiety and stress she experiences in caring for her child. Her body stays in a constant, low level state of fight or flight because at any moment she could be replacing a feeding tube that has been pulled out, replacing a trach, or suctioning her child so he can breath. When she does sleep, it is a light sleep because the pulse oximeter alarm could go off at any moment. So, yes, she is tired.
Therapists are her friends.
The medical mom might cry cry when her child’s physical therapist, speech therapist or occupational therapist moves away, goes on maternity leave, or decides to quit her job to stay home with her own child. The medical mom will cry because that therapist is also her friend. She sees the therapist at least once a week for an hour. That is the person she has adult conversation with, laughs with and cries with because the therapist understands her child. Therapy usually does not end for the medically complex child. It is an ongoing fight to meet milestones.
She knows you would like to help.
The medical mom knows that you would like to help, but she cannot reach out to you to babysit her child because you are not trained. She would absolutely love some time with her husband or some time alone, but that is rarely, if ever, possible.
Medical moms are a different breed, not by choice, but by necessity. They would not choose the life they have, but they also would not trade it because, to do so would mean trading their child.