Getting To Know Us

This was originally posted in 2008, but I've spoken to a couple of parents this week who may have missed it the first time...


WE...

• Listen for the cry of the baby we just gave birth to, only to hear a small moan

• Wonder why our baby is not rolling over, lifting his head, watching us move, or many of the other developmental milestones

• Know how an NG feeding tube and a heart monitor work

• Don’t understand why our baby feels so floppy

• Just want to see one smile from our toddler, one glance into our eyes that seems meaningful

• Have nebulizers, feeding pumps, syringes, tubing and extra peg tubes in our child’s closet, the car, and at school

• Keep an envelope on the back of the front door that lists all our child’s diagnoses, all the meds, and contact information for all the specialists who follow our child. This envelope is given to the rescue squad each time they come to our house to take our child to the emergency room. Eventually, we don’t need the envelope because all the squad members know our child. They even know where our child’s bedroom is in the house because they have been there so often.

• Greet the emergency room staff by their first name

• Know which schools in our school district offer which programs, and we know which programs to avoid because we have heard from other parents.

• Know and have had conversations with the school’s director of special ed, the compliance officer, and the superintendent. The secretaries for all those people have our names and phone numbers on speed dial

• Have a list of attorney's names and phone numbers pinned to our bulletin boards at home

• Often don’t attend church because we can’t find one that welcomes our child

• Avoid taking our child on errands because we can’t take the stares and rude comments

• Say we get used to the stares and rude comments and that they don’t really bother us. We are lying.

• Know the difference between occupational therapy and physical therapy, and we know that our child can have speech therapy even if he or she doesn’t speak.

• Know where to find the toys best suited for our child’s disabilities, but usually we can’t afford them. Instead, we know how to adapt regular toys and books.

• Have car seats and helmets for our teenagers.

• Probably haven’t slept through an entire night since our child was born – even if our child is 19 years old.

• Know the best way to remove feces from walls and clothes.

• Know how to strategically dress our sons so masturbation will be more difficult to accomplish

• Never leave the house without our child’s comfort item, and at least two backups to that comfort item.

• Long for close friendships, but usually have none. If we do have a close friend, it is usually another parent with a severely disabled child.

• Have alarms on bedroom doors so we know if our child starts to roam at night.

• Lock up medicines, foods, and sometimes even sharp objects.

• Know the names of IV antibiotics and at least 7 seizure medicines

• Know all the rules of the Family Medical Leave Act

• Fear what will happen when our child can no longer see the pediatrician and we have to find another doctor

• Have a freezer full of macaroni and cheese, and a refrigerator full of chocolate pudding.

• Know which hospitals have the best food in their cafeteria

• Know the type of doctor who makes prosthetic eyes

• Are deeply in debt because of all the stuff insurance won’t pay for, like home modifications, adapted devices, special clothes, lawyer bills, and the list goes on and on

• Have nightmares about what will happen to our child should something happen to us, the parents

• Love our children more than life itself

WE...

Are the parents of a child with a significant disability, and this list is only the beginning….

Please feel free to add to it.

Just a Thought

I know that there are people who will read this post and immediately start googling the location of the closest psych ward for me. But, trust me, I’m not ‘doing’ anything yet – I’m just sharing thoughts.

Now that I have a spare bedroom (Corey has left home and joined the Army), my thoughts immediately went to the subject of adoption. It seems a shame to have an empty bedroom when so many kids wait for a bedroom and a family to call their own.

**This is where some of you may start your Google searches**

I have not made a decision to adopt another child, but I must confess that I have visited the adoptuskids website. However, the type of child I would want to adopt (if I had made a decision to adopt again and I haven’t) is not the type that is featured on that website. I would want a child that is either currently in an institution or is headed to an institution.

It truly breaks my heart to just think for a minute about a child growing up in a room with a number on the outside. It breaks my heart to think of such a child not getting tucked in and a kiss goodnight every day. It breaks my heart that such a child may never hear the words “I love you” and have them ring true.

Children need siblings, not other ‘residents’. They need family dinners even if they are fed through a tube. They need holidays with loved ones not holidays spent with the ‘alternate’ staff. They need a dog or a cat and to raise butterflies at least once in their life. They need to sit on a blanket under a tree in the back yard looking up at the cloud shapes. They need sticky hands from popsicles eaten on a summer evening, all the while watching the blinking of lightning bugs. They need to wake up in the morning to the same face that they saw when they went to sleep the night before. They need vacations spent at the shore every year. They need Christmas presents under a tree that has a family’s history of ornaments dangling from it.

They need a family.

I’m not intimidated by complex medical needs. I have learned to navigate the health system in my area, and we have one of the best teaching hospitals in the US here. I have connections and family supports. I understand the insurance system and how to make it work for my children. I have a good job that allows me adequate time off, and I have the supports in place for my children when I am working. But I also have this nagging little whisper in my head that keeps talking about adoption of a medically involved child.

Will I answer that whisper? Not today. But maybe in the future….

Not an Option...Yet

As parents of children with significant needs, we've learned to adjust to the lack of sleep, the endless hours lost from work due to doctor appointments and such, and the stares of people who don't understand. But there is one thing that I, and some of my friends, are finding hard to adjust to.

As we lift, roll, turn, and steady our children who are unable to do those things for themselves, we are wearing down our bodies. At first, it comes as a general ache, a dull pain that over the counter pain relievers can help. Then it becomes more severe, and our doctors prescribe muscle relaxers, prescription pain killers, and such. But what happens when those things no longer work?

That's where I am right now. That's where my friend, Lynnette, and several others are also.

I have carpal tunnel syndrome. Lynnette has a problem with her bicep tendon. Another friend has intense back pain. And all our doctors recommend surgery. But surgery is not an option.

My surgery for carpal tunnel can't be done arthroscopically. It would involve an incision from the middle of my palm to about 4 inches down my inner arm. It's my right hand. The hand that hooks up Ashley's G-tube for medication. The hand that draws the medication into syringes. The hand that helps feed her - wash her - dress her. A surgery that would put me out of commission just isn't an option.

The same goes for Lynnette. She, like me, is the sole caregiver for her daughter, Brooke. She is the one that feeds her through her G-tube - the one who changes her trach - the one who hooks her up to the ventilator at night - the one who lifts and turns and bathes and changes. Surgery is not an option.

Yes, I realize that we may get to a point where there is no other option but surgery, but we hope and pray that we don't get there. In the meantime, we live with the pain, knowing it won't go away but hoping it will.

The people who don't really 'get it' say isn't there someone who can help you? Well, if there are, we haven't found them. People come and go in our children's lives, but their committment is to a job - 8 hours a day and then a trip home. We're just lucky if they show up for the 8 hours (which they sometimes don't).

Family? - nope, not in my case or Lynnette's case. Hiring a nurse? - nope, already losing so much time from work that money for nursing care isn't there. I just don't know the answer.

I'm not looking for pity, and I know Lynnette and my other friends aren't either. We deal with enough pity already. But if you do have some emotion to spare, understanding would be good.

Just in pain - just sharing - just wanting a little understanding...

Viruses, Ear Buds and Forsythia

What a weekend. It was like my little corner of the world shifted just a bit, and everything ‘normal’, gave way to the unusual.

First my computer and I shared a virus. I thought my pneumonia was gone after 2 rounds of antibiotics and several other types of medicine. I was hopeful that with Spring just around the corner, the plague would leave our house and we could all be well for a while. I was wrong. Ronnie woke up Saturday morning with a raging cold, and since I have to do all those motherly things which require sharing of body fluids, now I too am sick – AGAIN.

To top it off, Saturday afternoon my computer started throwing up ones and zeroes and telling me I had a zillion viruses. Since we have pretty good virus protection, I’m thinking another family member opened an email that shouldn’t have been opened or visited a website that shouldn’t have been visited.

Fortunately, I have a resident geek named Chip and he spent the rest of the weekend restoring my computer to health. Somehow though, I still feel very violated….

Then came Saturday night, and one kid who shall remain nameless to protect his dignity got an ear bud from a set of head phones stuck in his ear. I didn’t know such a thing could happen, but apparently it’s pretty common based on the nurse’s reaction at the urgent care medical facility. With the proper tools, it was extracted but not without a bit of pain.

But one thing did happen to brighten my weekend. I love forsythia bushes, but Spring is still not close enough for mine to start blooming. I check the little buds every day hoping for their splash of yellow, but it’s just not time yet. Or so I thought.

I decided to cut some of the longer branches and bring them inside. I reasoned that maybe the warmth of the house and the sun streaming in my front picture window might urge the little buds to give up their gift. And I was right! Here’s the proof…