What does having a special needs, medically complex child do to you? You have a child that is completely dependent
on you…literally you are responsible for keeping that child alive; whatever
their version of healthy may be, comfortable, feeling loved, etc.
They change:
- How you see life and death
- How you handle life, in the little and big things
- How you participate in life and activities (or don’t, which happens more often than not)
- How you parent that child
- How you parent your other children
- How you love – a love that you never knew existed, and the word love just does not seem to do it justice
- How you hurt – and boy it can hurt
- How you see the value and “quality” of life
- Your family structure
- Your marriage
- Your identity
- Your needs
- Your emotions
- Your faith
- How you have friendships – you just don’t have time or energy for anything but quality friendships
- Your lifestyle
- Your finances – how you spend money on your home, vehicles, savings, insurance, medical items, etc.
- Your time
- Your priorities and how you make decisions
- Your self-care and caring for others
- Your coping skills
- Sleep
- Endurance – I call it the sleep over effect. During the sleep-over (aka medical crisis) you are on and ready to go. Once the passes, whether it be hours or days or weeks, then you crash. Like a child that had a sleep over, totally up all night but crashes once home and sleepover is done.
- Your senses – I can hear the pump going off from a mile away. Sniff out a feeding pump spill or poo situation from another room.
- Your gut – sometimes you just know something is not quite right, sometimes you know something will be alright, even to the contrary (or doctors) and you have to trust that God-given “gut” feeling
- Your vacations or lack there of
- Your time management or ability to makes plans (making plans can just be laughable)
- Your dependence on others (which some of us just don’t like to do)
- Your need for help
- Your need for community and support because isolation is very real and easy to slip in to
- Your ever expanding medical knowledge and comfort level in all medical situations. And uncanny ability to recall any given medical fact about your child but cannot remember what you ate the day before
- Your circle, which mostly involves doctors, nurses, case managers, insurance companies, equipment companies, special-ed and pharmacists. Because they are who you interact with often.
- Realizing you have very little control and thank goodness God's got this because it is too much for us to handle.
- Your flexibility in situations and absolute stand-my-ground when fighting for your child
- Your voice. You learn to speak often and when needed, especially when you have a child that cannot speak for themselves.
- Hopes, dreams, goals, expectations that you had for the child and perhaps your family. You adjust.
- Milestones - You learn to grieve certain things but celebrate other things, new milestones
- Embracing different hopes, joys and celebrations
Everything about your life, and your family, goes through
filter of caring for that child. Your
child changes everything.
