A lingering worry in the mind of a parent with a child who has special needs is always, who will care for my child if anything were to happen me? Although Olivia is only 7, and by the grace of God myself and husband live to a ripe old age; it is still a worry that we must consider. This among other concerns routinely haunt our thoughts, but that’s for another post for another day.
This thought will fleetingly enter my mind and float around long enough to spark anxious feelings, then slide back into the emotional vault waiting to be stirred up once again in the near future. Some may say, why would you let yourself worry about this? Well, when you have a child with severe needs, you need to consider plans for the future, no matter how difficult it may be to think about.
Every once and a while my husband and I will attempt possible scenarios to answer the who. We would like to think her siblings will be involved in her care and well-being, and I undoubtedly believe they will; but is it fair to assume they take full responsibility for her? It’s not an easy answer. As much peace of mind it would give me if the answer were that simple, it also tears me up; because shouldn’t they be allowed to choose? They will one day have lives comprised of careers, homes, travel plans, families of their own. What if their spouse or partner objects to such a responsibility? Then again, I would hope they would choose someone who would love and accept their sister as their own. So you see, it’s all of that…the things that sometimes keep me up at night or catch me off guard throughout the day.
Then I see moments like this.
My son, all of thirteen years old, snuggling into his sister, chatting her up about her incredible day and he sharing about his; all the while comfortably tube feeding his sister. A task that comes as natural to him as reading books or playing a board game with her. Not because I asked him to, but because he wanted to. Because he loves her and wants to participate in her care. Because she’s his little sister and spending quality time with her is important to him.
Or her big sister that believes she will teach her everything she knows about the world and is wholeheartedly, fiercely determined to have the world see her little sister, the way she sees her. She is a natural advocate. They are as typical as sisters get. They fight, laugh, and bring out the best and worst in each other, but at the end of the day they are the best of friends. The love they share for one another is insurmountable.
All of this sparks a glimmer into maybe, just maybe, innately they’ve chosen to always be there for her.