The Truth About Being a Parent to a Medically Complex Child…by a therapist who has walked this path

Something that is most likely skipped in parenting books is how to navigate parenting a medically complex child. It is a full time job, a purpose, a heartbreak, a calling, and something that shapes you in your core. You might present to the world one way, but inside you are battling anxiety, doing medication calculations, symptom tracking, appointment scheduling.. the list goes on.

Here is what no one shares with you:

You become an expert immediately. Whether you like this fact or not, this is the truth. You become fluent in medical jargon, and how to interoperate your childs symtoms. You’ve adapted out of necessity, not choice. And there is a silent pressure that no one warns you about. The need to make the judgement call over if this is “normal” for your child or “do we go in or wait it out?”. In a room full of medical professionals, you still feel as though you are the one needing to tie everything together. And often, it is necessary. This level of responsibility is a gateway to burnout yet, also emphasizes how attuned parents are to their childs unique needs.

Your disregulated and exhausted. Other parents may worry, you monitor. You are doing assessments on risk constantly, despite the day being ‘good’ or ‘bad’. You sit at a level of vigilance that reshapes your nervous system. Your anxiety is continuously heightened. This explains your constant exhaustion and need for quiet and rest. You have taken note of it all. Your childs movements, eating, temperature, behaviors, the list goes on. This is hardwired in you.

There is a grief. You might quietly mourn the life or child you imagined. The ease and carefree days. The ability to travel without a load of considerations such as a time zone change effecting medication dosing. The proximity to a doctor, or hospital. A flight that puts you and your child out of contact in case of medically emergency. The list goes on. Your grief can catch you off guard in some surprising moments. Your friends sharing their childs milestones, a parent showing up at the park without medical equipment. Seeing the ease and normalcy of other families.

Remember this. Gratitude and grief can coexist.

People often say the wrong thing (unintentionally). You might hear people tell you “it could have been worse” or “at least …”. Some might share “kids are so resilient” or “I don’t know how you do it.” While well intended, these statements hurt and feel invalidating. You didn’t make this decision because you are strong. You are doing it because this is your only choice.

You deserve support that does not focus on your childs condition. You are not selfish for needing help. You are human for feeling overwhelmed, anxious, burntout, angry, scared and exhausted. Support can come in many forms. It can be a loyal friend, a loving partner, a trusted family member, even a professional therapist. A therapist is able to give you the kind validation, while also providing you with tangible tools to assist in the navigation of the world that so many others (luckily) do not understand.