Tag Archives: disability

A Life Without PACS1

Confession time…I forgot that Bridget is now a senior in high school. It was not until this week when I started seeing all the back-to-school posts from the parents of former peers of Bridget that it hit me:

How different our lives would be, if Bridget had not been born with a rare disease.

What if she had been born and then come home instead of the NICU?

Instead of spending her newborn and toddler years in therapies and medical appointments, she may have had playdates and if I had forgotten how torturous Abbey’s dance recital had been, maybe I would have enrolled Bridget in dance class.

She would have gone to kindergarten and made friends that would have lasted through this senior year. She may have joined sports or been the class president. Based on Bridget’s sense of humor, with PACS1, she definitely would be the class clown had she been born without it.

Bridget would have her driver’s license now; had she been born without PACS1. I would be worried about her staying out too late or driving in bad weather.

Bridget would be making homecoming plans, maybe getting one of those silly over the top invites by a boy my husband would not trust with his little girl. I would be at her friend’s house watching the girls get ready with too much make up and too little dress covering her ass. Since she is a fashionista with PACS1, I can only imagine what she would be wearing without it.

Bridget would have a job, a life outside of mine. She would be making her own money. Probably at a garden center, working for a florist or doing something creative. Instead of teaching her life skills or using the garden center as an out of the box OT session, it would be something she might one day make a career out of.

If Bridget was born without PACS1, she would be making college decisions. Or as I said to her sister years ago: college, the military or not my house after you graduate from high school. She would be figuring out the rest of her life, making plans for life without our constant supervision. I would be wondering if she was leaving the sandbar for the iceberg and hoping she chose a school closer than her sister did but far enough away that she could begin to form her own life.

If Bridget had been born without PACS1, my husband and I would be preparing for life as empty nesters. We would be having weekends away. Instead, we are in a holding pattern. While our peers are living their best lives with independent children, we are living our best life with a child who will always be a preschooler. We will never be empty nesters, and while thankful our friends understand that and never mind including Bridget, it would be nice if we could just pick up and go.

Like our friends we would be dealing with our elderly parents but not also dealing with a toddler. We would be helping our parents with their healthcare issues, while not also dealing with hers. We would not only be our parents’ healthcare proxies but also our adult child’s guardian and power of attorney.

We would be making our retirement plans but not having to consider how Bridget fits into those plans. From relocation and the disability services available but the medical implications of leaving the security of Children’s Hospital.

Without PACS1, we would be watching Bridget take senior photos. Instead, there are no school photos, since she left public school.

I don’t usually go down the road of what if…I love seeing my friend’s posts and usually I forget that their child is the same physical age of mine. When I am seeing the senior flashback photos, I do not participate, as I did with her sister. Although Bridget is technically a senior in high school, when you are in a special ed school they don’t really distinguish grades. Rather you are grouped by ability.

I wonder, am I doing a disservice to Bridget by not participating, now that I remember she would be a senior without PACS1? Am a horrible mom for some days wishing she was born typical and not just loving the child that she is?

No, and if you at home have that not-so-typical child have these thoughts too it is okay to wonder what our life would be without rare disease impacting it. To me, it’s like loving your typical teen even if they aren’t really loveable in those hormone driven moments. Where you wonder with your typical kid, why can’t they just be quiet!

I forgive myself for these what if (and sometimes what the everlasting fuck) moments. I don’t love Bridget in spite of PACS1 or because of PACS1.

I love Bridget for the child she is and if there are moments where I wonder what our life would be without PACS1, I also have times when I wonder what our life would have been like had David gotten his wish of having six children. I wonder what my life would be like had I left the sandbar at 18, instead of making a life on it. I wonder what my life would be like in a hundred different ways had I just made one other choice.

Wondering what life would be without PACS1 doesn’t hurt like I thought it would. Well, okay, it hurts but not as bad as imaging a life without Bridget.

Yes, it’s complicated

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Dear Mr. President,

After an eventful first month in office, your office has determined to undertake an overhaul of our healthcare system. Specifically, you and the House Republicans want to repeal and replace the Affordable Care Act (a.k.a. Obamacare). It seems you are now realizing that dismantling the ACA is not going to be as simple as creating an Executive Order.

“Nobody knew healthcare could be so complicated“-President Trump

Actually, Mr. President, thousands of special needs parents could have told you that. If only you had asked.

It’s complicated when a child in Dallas can not receive the same healthcare services as a child in Boston.

It’s complicated when a parent has to complete an application for Medicaid, every year, so that her disabled child can continue to participate in the program.

It’s complicated when a family determines where they will reside based on the healthcare their disabled child will receive.

It’s complicated when your teenager in New Jersey needs diapers and insurance will not cover them, but if only they lived in California the insurance would cover the expense.

It’s complicated when a child has been on the same medication for five years, yet every year the doctor has to complete a prior authorization form proving his patient still needs the medication.

It’s complicated when one insurance company covers ABA therapy, but another one doesn’t.

It’s complicated when an insurance company covers one body part/diagnosis per life-time, yet a disabled child will fall down the stairs more than once when learning to walk.

It’s complicated when we have insurance through our employer, yet we have to pay additionally out of pocket for Medicaid for our children to receive care.

It’s complicated when a parent has a medically complex child and has to fight the healthcare system for their child to succeed.

It’s complicated when your child needs to see an orthopedic but needs to see two doctors for approval before the appointment can be made.

It’s complicated when a child who needs a wheelchair is only eligible at minimum every five years for replacement.

Yes, Mr. President, our healthcare system is complicated. Only those who have never had to access it’s programs are naive enough to think otherwise.

The ACA is not perfect, Mr. President. There are many improvements that can be made to the program. For example:

Once approved as permanently disabled, cease the annual application process.
Make durable medical equipment, therapies and treatments universal and not dependent on what State you reside in.
If a person is approved for a medication once, let that medication order stand.
Change Medicaid to a Federal program, rather than a State program, thereby covering disabled persons when they travel.
Cover genetic testing for any child with an unknown diagnosis.
Demand that Big Pharma bring down the cost of prescriptions. No one in America should have to pay $1029 (a month) for a medication that is free of cost in the U.K.
Cover ABA therapy for all children, not just those diagnosed with Autism.
Have every elected official enroll in the plan that is created, so they feel the same limits their constituents may encounter.

Yes, Mr. President, healthcare is complicated.

The ACA is a good start. It covers preexisting conditions, a disabled child is now covered if their parent’s plan changes. It covers children to the age of 26, allowing a disabled child to be less taxing on the Medicaid system. It holds physicians accountable. It covers more screenings and preventative care.

Healthcare is complicated, Mr. President but it needs to be improved and not dismantled.

I implore you, don’t limit your team to just hearing from big Pharma and elected officials. Like yourself, they may never had to worry about having medical care covered. Listen to the true stakeholders, your primary responsibility. Listen to the American citizens who are effected by the “complicated” healthcare system, every moment of their day. Bring us onto the panel, as an active voice, so we can tell the Republican and Democratic leaders how a change will impact real people.

Yes, Mr. President, healthcare is complicated. But not more complicated than anyone could have imagined.

Just ask any parent of a child who has a disability.

Rare, but together we are mighty

2 Replies

When your child is diagnosed with a rare syndrome, you are at first overjoyed: YAY! We know what “this” is! Then you are back to being overwhelmed: What do they mean they don’t know what “this” is! A parent who spent years searching continues on, looking for answers, looking for a cure and (most desperately) looking for someone who has been there before who can give you a road map.

I spent the first five years of Bridget’s life without a road map. Not one doctor could tell me anything other than, we know something is wrong but we don’t know what it she has. Years of seeing doctors and specialists who would tell us that we are doing everything possible to make Bridget the best she could be, and to keep up the good work.

Then we were diagnosed with PACS1.

Journey over, right? Um how about it was just beginning. Continue reading →