Dear “Manhattan moms”

Today I read an article from The New York Post that disturbed me to the core. In essence, there is a group of elite moms from New York that hire a “disabled tour guide” when they travel to Disney World. The point is to get ahead of the lines, as Disney is extremely accommodating and offers passes to cut lines to those with disabilities. We took advantage of this when we took Isaac to Disney on his Make A Wish trip.
I’ve been thinking about these moms all day, and the fact that they hire a disabled person in order to avoid waiting in a line. I’ve thought about what I would say if I met them, my first thought was “f” you… but, in the end I would really like them to know what it’s like to raise a disabled child, since they so badly want the “perks” that come along with it.
Raising a child with disability is all consuming. There is no predicting, there is little routine. When you least expect it you can end up living in a hospital – this means little to no sleep, little to no privacy, and more importantly it means that something is significantly wrong with your child – and it is something that you cannot fix. Your child’s life is in somebody else’s hands and you are a bystander.
Once a week we lay Isaac down, pull his trach (his lifeline) out of his neck and replace it, that is the routine part of living with a child with a tracheotomy. The not so routine part comes when a plug develops and occludes his airway, and you are left with seconds to change that trach and get him breathing again.
Our days are spent suctioning the trach, driving to therapy and doctors appointments, ordering supplies, organizing supplies, cleaning supplies, feeding Isaac 6 times a day through his feeding tube, fighting tooth and nail with insurance companies, and making sure we love our other children enough to empower them as well.
We don’t take vacations, because every couple of months we fly from Virginia to Minnesota to see the one surgeon in the country who can keep our child alive and functioning. When an emergency arises we are on the first flight to Minnesota, and there are no disabled tour guides to take Isaac’s place during these very scary times.
We have lived separated from our friends and family for close to a year, to save our Isaac. We have gone months without paychecks and relied on the kindness of friends and family to help pay our bills. Our son has undergone 21 major surgeries, he has spent months completely paralyzed and sedated, he has gone through substantial drug withdrawal 4 times. The majority of his first year of life was spent in the ICU – again, there were no “tour guides” to take his place.
I wouldn’t trade this journey for anything. I hate the pain and discomfort Isaac has endured – I always will. However, without this we wouldn’t know true love, happiness, strength, resiliency and devotion – and really, isn’t that more important than jumping to the front of the line??

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