When my wife and I found out we were going to have a second child with disabilities, we began a process of grief and loss for our middle child (2 yrs), who would now have another sibling not much different than her older sister.
While the process of grief is a tricky one, it is a process. Eventually, a time came when we realized that we’d have to find ways to separate our two-year old from the constant stresses of care giving for her two special needs sisters.
We started dreaming big dreams about the ideal situation, which included a house with separate wings, a care-giving wing and a family wing. We even dreamed about giving the two differently abled children their own house, complete with ramps, caregiver quarters and all the accessible necessities to make life easier, but separate from core family time.
At first, these dreams went against my every fiber, my every being of what I knew and understood a family to be - a core group of people supporting, loving, sharing, creating memories, etc. But as the reality of our situation with the two children with cerebral palsy (one severe, the other moderate) became a day-in, day-out operation, we began to need care givers to support their medical needs, which changed the entire family dynamic.
It was particularly evident, as our middle child required more one-on-one time with both of us. We started first, spending small amounts of time with her, taking her to story time at the library or taking her for a special lunch date, in between the many medical appointments we had with the other girls. These small glimpses into her world forever changed how I would view her future needs of mom and dad time.
Even though we have ‘socialized’ her at daycare two to three days per week, it became clear that she would need isolated time with mom and dad. Not only that, but she would need special time with her grandparents, aunts, uncles, etc. but not in the drop-her-off-so-we-can-get-time-to-ourselves-kind-of-way.
She would need mom and dad with her in our non-care-giving capacities so that we could give her the special attention that she needed - after all, she is at such a critical development stage.
The point is that it’s awful darn hard for us parents of differently abled children to make special time for those children who are able, who have many requirements that are special and who need our undivided attention at critical junctures - as development and learning never stops.
It gives you all kinds of emotions, ranging from guilt to joy and everything in between, so making the decision to give a child their own special attention becomes difficult or never happens.
Having just returned from a short stint - a long weekend at Grandma’s house - with my wife, the family dog and with complete focus on my two-year old daughter, I can say with complete honesty that it will happen again, over and over, for as long as she will travel with us.
Sure, we all suffered from post-mini-vacation bliss, not to mention a very tough transition back to reality, but it was the best decision we’ve made, and the hope is that the benefits for her will far outweigh any of those emotions that got in the way in the first place.