A New World - Update

Last week I wrote about a new mom who had just recently given birth to twins. One of the babies didn't survive childbirth, and the other had significant disabilities. The NICU nurse asked me to stop by so the new mom and I could chat.

Many of you offered suggestions on what I should say or do during that first visit, and I appreciated each and every one. I'm a person who wears her emotions on her sleeve, and I knew I would have a difficult time knowing what to say and do. But because of your suggestions, I had a plan, and it really helped.

The mom and dad were both there when I arrived. Although their beautiful daughter was staying in the hospital, they had been released themselves a couple of days prior to my visit. Reluctantly they went home for a few hours each day but spent most of their time back at the hospital.

I could see the pain and uncertainty in their eyes, but I could also see the strength in their souls. I knew almost immediately upon meeting them that they would all be ok. The journey to ok might be a long and difficult one, but they leaned on each other and seemed to draw strength from each other. And the love for their daughter was so intense that I almost felt like I was intruding on a very private moment each time they looked at her.

Mom talked about the sadness of losing their other daughter. She cried but all the while rocked and stroked her surviving daughter. The funeral was planned for the day after my visit, and while I'm not sure that in that same situation I could have withstood the pain and loss, this new mom seemed distraught but without losing hope for the future.

Dad talked about having to go home and remove the doubles of everything baby - one crib instead of two, one swing, one car seat, etc. A darkness clouded his eyes as he described the removal, but a small light came back when he talked about donating the extras to a homeless shelter for mothers and their children. He stood with his hand on his wife's shoulder and frequently leaned down to kiss both her and their baby.

I softly worked into the conversation the story of Ashley and how I came to be her mother. I spoke of the challenges but also of the triumphs and joys. I told them about the supports that were available, and how much they had helped Ashley and me over the years. I described Ashley as an infant - not so different from their new little one - and then I described her today - a feisty, opinionated, happy teenager, a child who proved so many people wrong. I threw in the fact that some challenges would be daunting and that they might need to fight and fight hard along the way to obtain what their daughter would need. I honestly told them that some days would be darker than others, but that the light would shine more often than not.

I showed them some pictures and shared some funny stories. And I told them that whenever they needed anything, whenever they felt like talking, or whenever they just wanted a shoulder to cry on that I would be there.

I think the fear of 'aloneness' in their situation was what frightened them the most. I hope that after my visit, that fear was lessened a little bit.

They are a lovely family, and I think they will survive this, and overcome whatever challenges are thrown in their way. I will stay in touch, and I will keep all of you informed also. Please continue to include them in your prayers....

Brave Enough?

You know what I really want to see on TV - a show that has a character with severe disabilities. I don't mean a show ABOUT a person with severe disabilities, but rather a show the INCLUDES a character like that.

We've seen shows that include people with Down Syndrome, people with other intellectual disabilities, and people with physical disabilities like the current Push Girls show. But I want to see a person who uses a wheelchair, uses a device for communication, is tube-fed, and maybe even someone who has a trach.

I don't want that character to be the only thing the show is about. I want that character to be part of a family, or a group of friends - someone who is part of life, both its challenges and its fun.

Perhaps a show like Modern Family. Yes, it's a comedy and some of you may be thinking that there is nothing funny about a person with severe disabilities. I disagree. I have met some hilariously funny people, people who just happen to have several significant disabilities.

I know that Ashley is not considered severely disabled by some, although her diagnosis of deafblindness does sort of qualify her to use that label. She has a wicked sense of humor and always has. I've also met a woman who moves her power wheelchair by blowing into a straw. She loves to tease and play jokes on people and has the most infectious laugh ever.

It's time for society to want to be friends with people with significant disabilities. Most of the time, I think people just don't know how to be that friend, and a TV show could help.

What do you think? Is there a network brave enough to even consider such a show?

Yea, Friday!!!

Happy Friday, everyone. I know I promised an update on the little newborn whose mother I visited, but I'm not quite ready to go there yet. Rest assured, the wee one is surviving, and I will update early next week. But for Friday, I want some comedy. Here is a sign language version of the classic "Who's on First?" routine. Granted, if you don't know sign language, you may miss some of the comedy. But give it a shot. I'll bet you'll be surprised how much you can figure out...

"As far as we know"

Last week, Ashley came home from summer school with significant bruises on both her knees. One knee was swollen and needed ice applied. These bruises joined the other scattered over her body. No note came home from summer school and no phone call was received explaining the bruises.

I sent a note in the next morning asking what had happened. The response came home in the afternoon - "Ashley is doing so well in school. She is a joy to have around, and we are so glad she is a part of the program this year. As far as we know, she didn't fall, so the bruises must come from playing on the playground equipment."

Ashley is supposed to have a full time aide by her side at all times. A seizure can happen at anytime, and her aide is supposed to be there to assist, not to mention the fact that Ashley needs a sign language interpreter at all times. Yet, "as far as they know", Ashley didn't fall???

Monday afternoon this week, Ashley came home from summer school with a bad abrasion on the inside of her right arm just above the crook of her elbow. It was about the size of an egg. No note accompanied her again. I washed it and applied antibiotic ointment. But this time, I did not send a note in the next morning.

The next day, near the end of the summer school day, I receive a phone call from Ashley's teacher telling me that Ashley's aide just reported that Ashley scraped her arm going down the slide on the playground. They took Ashley to the nurse who applied "neosporin and a bandage." I mentioned to the teacher that the injury had occured the day before and her response was, "Oh." No explanation, no apology, nothing.

I'm just hoping Ashley makes it to the end of the summer school session without breaking a bone, getting stiches, or putting out her one good eye...

Special Exposure Wednesday

This year's drought has wreaked havoc with my vegetable garden and my lawn. But there are some plants that have flourished. Of course, all the weeds are doing just fine without rain as are my herbs, which I guess are just weeds themselves. In fact, the herbs were growing so big and taking over everything else in the garden so I moved them to pots to try to corral them. I think it's working!

A New World

Marla called me early yesterday morning. Marla is a nurse in the NICU at one of our local hospitals, and she and I met while our sons played little league T-ball many years ago. She also stopped by to visit when Ashley was in ICU about 10 years ago. Actually, I hadn’t heard from her since that time.

Seems a new mom was having a tough time. She had delivered twins last weekend – one of them didn’t survive the birth, and the other was significantly disabled. The doctors feared that the baby was deaf and blind. They knew she had trouble breathing and very frequent seizures. Her survival wasn’t ensured, and after witnessing the mother’s breakdowns every time someone mentioned her child, Marla asked me to stop by to see if the mother would like to talk to me.

I agreed but I was scared to death.

The only qualification I have for helping someone like that is the fact that I have been through some tough times myself. But, I didn’t give birth to Ashley, and I feared that added another dimension I was definitely unqualified to address. But I couldn’t refuse.

I will meet this new mom tomorrow, and between now and then I need to think about what I will say and do. Hopefully some of you can help me with that.

I can say I understand her fears but my understanding only came after the fact with Ashley. I wasn’t there at Ashley’s birth. I didn’t wonder if my baby would survive those first weeks, and I never had the dark secret thought that it might be best if she didn’t.

I didn’t question what my life would be like when my baby was sent home with me. I didn’t wonder if I would be capable of caring for her, keeping her alive, and loving her. Most of the hard times came long before I brought Ashley home at age 2. How can I sit next to this new mother, hold her hand, and tell her I understand?

This mother had no choices really. I did. I chose to bring Ashley into my life. I chose knowing that my life and my son’s life would be turned upside down. I accepted the fact that I was entering an entirely new way of living and parenting, and even more than acceptance, I wanted it. This mother wanted two babies, babies considered ‘normal’, babies that would need care and love but not tube feedings and seizure meds.

What do I say? Or, do I say nothing and just let her know that I am there if and when she wants to talk? Do I tell her the baby is ‘special’ and that she, the mother, will find the strength to love and care for her daughter? How can I really say that when I don’t know if it is true?

Do I ask how her husband feels, if indeed she has a husband? Again, this will be a point around which we will not truly relate. I made the decision to adopt Ashley as a single parent. I know many marriages don’t survive the birth of a child with severe disabilities. Do I say that? Do I suggest she see a counselor as soon as possible?

I sincerely hope this is a parent, or parents, who can find the strength to love and care for their baby. But if they can’t, I hope they also have the strength to let someone else do it for them….and I don’t mean an institution.

I want to help, but first I need your help.

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.