My daughter Hannah suffered a massive head bleed in utero. Due to a rare circumstance, Hannah’s platelets were brought down to near zero while in the womb, and the finest capillaries in her brain bled out.
At first, we were told to terminate the pregnancy since it was likely that she would have disabilities. We responded that abortion was not an option.
Then, we were told that we have no idea what it would be like to raise a child with special needs. The doctors were right. We had no idea how difficult it would be.
What People Can’t See
To be fair, new parents do not know what it will be like to raise any child. Every child is unique and has his or her own particular needs. Yet there are extra layers of care that come with raising children with disabilities.
Some of these extra layers are visible and fairly obvious.
- The layer of time: many visits to specialist doctors, extended stays at the hospital, administering medications, and even the extra time needed for routine care such as diapers and bathing.
- The layer of stress: arranging schedules around appointments, managing insurances and financial matters, and just simply the demands of administering complex care.
- The layer of exhaustion: monitor alarms going off in the night, the need to reposition Hannah during her sleep, being awoken and not being able to go back to sleep due to the anxiety of the moment.
- The layer of sorrow: Hannah truly suffers in her disability. We ache when she aches. We bear with her the hardships of how she is broken.
But there are also extra layers of care and need which are less visible and not obvious.
- The layer of social stigma: people trying not to look at the “different” person but still sneaking a peek; the awkwardness of people not knowing how to talk about (or even to) Hannah; and sometimes the judgment of “what did you do to have a child like that?”
- The layer of a strained family dynamic: An increased percentage of marriages end when there is a child with special needs; siblings often feel left out or not special in their own way; and the extreme loneliness of feeling like we are the only ones going through this.
- And then there is the layer of facing the unknown: Because of Hannah’s fragility, the specter of death often is in the background. We often ask ourselves, “Is this Hannah’s last day?” This layer is like disturbing white noise – it produces psychological goosebumps, where one’s emotional wellbeing is on edge and one’s soul is weary.
Challenges
An unseen challenge my family faces is the freedom-robbing nature of complex care. If you are a parent, perhaps you remember bringing home your first child and the overwhelming feeling of “what next?” You are responsible for a new human. You must do everything necessary to raise a new person. It is time-consuming, but you do not mind because this is your new baby!
Now, imagine if that child never matured, but just got bigger. You still do all the feeding, diapering, carrying everywhere, and putting to bed. All the care, all the time, all day, every day.
As a whole family, we really cannot just get up and go places – at least not without lots of planning. Hannah’s complex care demands strip away the possibility of doing anything impromptu.
Hannah’s complex 24/7 care often requires complex planning. To eat out – what medical equipment needs to be brought? Can we get Hannah’s wheelchair into the restaurant? Can we time this around her therapies? To go to the park– are the trails wheelchair friendly? Is the weather right for Hannah’s comfort level? Can we time this around her therapies? To watch a movie uninterrupted– is she reasonably stable? Is she going to make lots of sound? And as always, can we time this around her therapies?
One workaround to this reality of Hannah’s care is to divide up the family for outings. Most go to the park, but one stays home to care for Hannah. Some go for a hike, and others stay at the picnic table to be with Hannah. This arrangement certainly is not ideal, but it is an accepted reality; when people realize this lesser-known reality, it helps them understand our story. We do not talk about it much, but we do lament the loss of freedom that comes with caring for someone with profound disabilities.
But whatever the challenge, and whatever the costs, Hannah will always be a gift from God. Her smile will make you melt and perhaps even bring you to tears. She laughs when we argue, reminding us of what’s really worth being angry over. She is perhaps the best evangelist I know as she is a living testimony that we are saved not by anything we have done or could do but only by the grace of God.
Hannah always reminds us of the hope of heaven, the full restoration of all that is broken, and the expectation that formerly disabled bodies will dance with joy before the Lord.
Jamie MacGregor is the senior pastor of Cornerstone Presbyterian Church in Delafield, Wisconsin.