We always knew becoming parents would be hard, but becoming parents to a child with both special and medical needs has changed the definition of “hard”. The daily concerns and observations required are beyond the typical stresses of parenting a child without special and medical needs and can be exhausting. Our days begin early and are often spent observing our child’s behavior, seeking medical information to ensure we are as up-to-date as possible, traveling two hours each way for appointments or working morning through the evening to provide.
We have earned multiple degrees in a very short time, degrees that are not acknowledged by others but required by our child who depends on us to keep them well. We’ve learned a vocabulary of medical terms, how to operate medical equipment, change feeding tubes / tube sites, clean and dress surgery sites, giving medication and shots, learning and monitoring oxygen / heart monitors and recognizing what can sometimes be an invisible illness.
Our definition of “normal” differs from others, our “normal” isn’t a temporary situation but a lifestyle we will forever live as special needs parents. We have gone through what has been the worst (for us) and those memories remain in the back of our minds as we adjust to our daily routine, we stay on high alert. We have learned that our new “normal” can be a day of stability turned to complete chaos in just minutes.
Prescriptions are provided to keep symptoms at a minimum, diets can assist with intolerances, feeding tubes can provide nutrition and assist when other body parts make eating by mouth intolerable and heart disease can be surgically repaired, but none of these interventions can erase / cure the condition.
This isn’t the life we planned, this isn’t the future we imagined. We didn’t intend to become doctors, therapists and educators – But, We faced our child’s diagnosis, we endured the shock, guilt, anger, sadness, grief and we found acceptance. We are the parents to a special needs child with medically complex needs and this is now all we know. We aren’t unhappy, we have good days – we laugh, smile and remain thankful. We don’t expect anyone who hasn’t had first-hand experience to understand, because at one point in time – we didn’t understand either.
But, if we are overprotective, unreasonable or seem uninterested in average life “problems” – this isn’t because we don’t care, but because we are focused on caring for our child and watching attentively for potential problems we may be up against. This is our life now and we do our best to keep our child well. We have seen the unimaginable and know while our child may look “well”, this doesn’t erase his/her condition. As we move forward and work towards development, milestones and stability – We also remain alert, prepared and ready for tomorrow..
“Most people with CHD do not look sick, but they fight every second of the day, just to live! Their scars are very real, beneath their shirts are battle scars – constant reminders of their courageous fight. Only mended, never cured. “ -CHD awareness.