Disability

I have never jumped on this particular band wagon on this blog, but I'm jumping now.
 
I've dealt with inconsiderate people in isolated instances many times throughout my life with the girls, but our vacation week in DC amplified the issue. Significantly.

We had a great vacation together in our nations capital, but also dealt with the most out-right rude collection of people I've ever encountered.  I have to assume that they don't realize what they've done, so this is a friendly reminder. 

our first day in DC

People with disabilities, and mamas with small children need a little consideration.

Period.

I want to stress that I don't expect special treatment. I only want the very few things on this planet designed for the disabled to be available to them. Life IS NOT easier in any way for my child. We are always trying to get by in a world made for able bodied people. Besides the front line pass at Disney, there are no perks.

Let me start with children. There are a few precious mamas out there who remind their children not to stare, or jump in front of my daughter, or remind their child to wait their turn, even when my daughter can't elbow her way in. THANK YOU! Thank you for this much-appreciated lesson in manners. We have also encountered some very kind, considerate adults.  Thank you.  You are not unnoticed and we definitely appreciate you.    

Our week in Washington, not only did children stare (seemingly more than usual), one mother actually pointed Emily out to her child, while both of them stared. I can't explain what this feels like. Uncomfortable at the very least. If I have time, I will ask a child if they have questions, but really, shouldn't mom know better? Please answer your child's questions discretely and honestly. If there is time, ask me questions politely. Always, always, always remind your little one that it is never kind to point or stare.

We also encountered several children at the zoo and museums who literally STOOD on Emily's wheels to see in front of her. We wait our turn to get a good look, and theses little munchkins use her as a foot stool. Kids are always learning, and I'm not upset with them, but I am asking parents to step up and teach. Simply telling your little one that stepping on her wheels would feel like someone standing on their feet and reminding them not to do it goes so far. Treat others the way you would like to be treated.

I often hear children ask why my child needs to be in a wheelchair. Simply answering that she was born different in some ways from other children, and the same in some ways almost always works.  It's okay to answer them, just remember that we are a family, not an exhibit.
 
This one isn't so friendly, but true. Everyone on this planet needs to slow down long enough to not slam a door on my child's feet, on a baby stroller, or into an elderly person. I mean really, where are you going? I want to chase these people down and ask what in the world is SO important. Let's look around before we shut doors.

If there is a specifically designated place for handicap use, and you are in it, be prepared to move. I, personally have no problem with people who use the handicapped bathroom stall, or sit in their seat, until Emily needs it. If a person in a wheelchair is in the restroom with you, do NOT go into the designated accessible restroom if there is a wheelchair 5 people back. Turn around and let that person know their restroom is open. Set an example. There is ONE stall that a wheelchair can fit in, and likely 10 others you can use. If you are going to use the accessible space (which I have before), you accept the responsibility of paying attention.

On the metro (or trains, planes, and buses) there are designated handicapped spaces. They are there because it's the only place a wheelchair fits. If you are in that space when someone it is designed for needs it, for goodness sakes, MOVE! We rode that train 10 times on our trip. We had one person move for Em. ONE. Perfectly able-bodied people looked up, and back down again. I do not want a single comment reminding me that not all disabilities are visible, because that was not the case here. I saw them get up at their stop, and trot off to their non-disabled life.

We have to walk longer and further to find elevators. I watched as a group of 20-somethings jumped on an elevator in front of Emily. A mom with healthy walking children nearly toppled an infant trying to get in the elevator first. I would LOVE to be able to hop on an escalator, but I can't. I have to wheel my daughter to the closest elevator (which always seems far from where we are), only to wait another 10 minutes, and as nicely as possible, fight off rude people. It's always so much harder. So if you don't need the elevator, please take the stairs or escalator, especially in crowded places.

At our national Zoo, a police officer wanted us to take Emily out of her special needs jogger stroller to enter an exhibit. We waited in line like everyone else, and just wanted to go in when it was our turn. We explained that she was 15, and not able to walk. He told us we should have put her in a wheelchair if we wanted her accommodated. Really? We have never used the stroller before, but Jeff and I were grateful that we had a light, easy option for a long day of walking. A friend just gave it to us, and Emily was so excited to use it. You should have seen her face when he was giving us a hard time. I was livid. We were able to take her in, but it ruined our experience.

Again, does anyone think we don't wish she could hop right up out of a stroller? Do you know how it feels to see a line of toddlers do just that? It's obvious that Emily needs her chair. Help her without humiliating her.

A family with a baby in a stroller, and us were waiting for the shuttle that took us from our hotel to the metro. We were each out there about 20 minutes. When it finally came, a family of four rushed the bus. The other mom explained that there was a line, and we had been waiting a while. That family looked up and continued past us. It takes a while to get Emily out, and the other people refused to get off. We squeezed in, with Em on our lap, as did the other mom. I was very hurt by this, but more so by the message they taught their children. In truth, we could have all squeezed on, but they should have waited their turn to get on. Play fair. Don't cut line anyway, but especially not in front of kid in the wheelchair, or the baby in a stroller.

The van we squeezed in to

We are asking that others simply pay attention, and for me particularly as a mom, I would like to see parents stepping up and teaching their children how to respond.  You may not have all the answers, but there is basic etiquette parents can address with their children where the physically impaired community is concerned.   

 Be respectful.

Good weekend

First, That whole situation with Nola couldn't have turned out better!

She didn't end up needing a procedure. The repeat x-ray looked better, so the vet kept her all day and fed her canned food. She acted great, and didn't throw her food up. The follow up X-ray at the end of the day showed the food moved into her intestines, and they let her go home :)

They think it was either a dental chew that took longer to dissolve, or she swallowed something that was finally able to move. We kept her on GI diet canned food through the weekend, and Monday we will move her back to her regular diet. All good!

Hannah was home. That was very, very nice, but flew by.

The first day my girls are together again is so sweet. We were at Jeff's sister's house for a block party, and I looked to the couch and saw Emily cuddled into Hannah's shoulder on one side, Sarah on the other holding her sisters hand. Given enough time, they will find something to squabble about, but when they hold together like that, I know how much they love each other. It's really nice as a mom to see my kids being kind and loving one another.





Today, we went to church, and just enjoyed our day at home together.

Emily had a few seizures, which made her cranky. They are never fun, but thankfully, she doesn't have them often anymore.

We are interviewing a cna tomorrow. We have to change from nursing care to a cna for Em because her seizures are stable now. That's great and terrible. We lose our sweet nurse Sara, but hope to find someone else Emily likes. I interviewed one lady last week that was not experienced at all with children with disabilities. The person coming tomorrow has lots of experience, so hopefully she clicks with Emily.

This was an uneventful weekend, which is just the way I like it.

I hope you had a good weekend too. :)


 

I can't get away from bellies

I stood before yet another screen today as I was shown X-rays of a sick belly. Once again, I heard familiar words like dilated loops, and obstructions. I heard about various surgical options and next steps. I called my husband and made plans. Again.

As I looked at the X-rays I wondered why. Why in the world does another sick tummy have to come through our lives? I have no idea, but I shouldn't be surprised.

This time, folks, that belly belongs to Emily's beloved service dog, Nola.

She's been throwing up everything since yesterday, and today she went to the vet where they x-rayed her, and found an obstruction of some kind. Tomorrow morning, she'll have an endoscopy, and possibly surgery. Our poor girl.

The white arrow points to the obstruction, the second film shows the dilation.








To say we love this dog is an understatement. She is Emily's best friend in the world. I'm sure she'll be just fine, and even though I was in a vets office, the conversations and all the phrases and concerns I listened to so many times before with my girls crashed over me. It's really hard to hear. I feel like this situation finds a way to replay itself over and over in my life.

Nola will have whatever she swallowed removed, and life will go on. I am incredibly thankful that I can say that for Nola. I simply can not look X-rays without thinking of Abby. I so wanted my daughter to get better.

Every single day, I wish we could have done something more for Abby. I will never be able to look at films without remembering 129 days in hospitals, and uncountable X-rays and procedures. As much as we love our Nola girl, she obviously isn't on the same plane as our daughter, but the conversation about the tummy was. Eerily similar words, vividly bringing me back to the heartbreak and helplessness I so often felt for Abby.

I cried as soon as I was alone today. Not because of Nola; I know she will be fine. Days like today are the not okay days when I miss Abby Grace so much, I don't know what to do.

Seriously, will I ever get way from sick bellies?



 

Is okay okay?

There is a thin line that separates laughter and pain, comedy and tragedy, humor and hurt.
~Erma Bombeck

We have had a busy, but wonderful time vacationing over spring break. It's strange to be able to hop in the car and go. There wasn't a day we were gone that I didn't think of Abby, but we still had a great time together.

I certainly have terrible days that I miss Abby so much, I don't know what to do. Sometimes I spend time searching through her pictures over 14 1/2 years of expressions on that little face. Some days my heart breaks just thinking of looking at her picture.

Most days, however, I feel okay. I have joy in my life from the family that God gave me, and time I was blessed enough to have Abby Grace in my life. It leaves me feeling confused and wondering if okay is okay.

I don't really want to be alright in a world that doesn't include Abby. I want to hold on to her as long as I can. It kills me to think I could forget any part of her life. When God gave me the privilege of being that girls mama, He knew He would also be giving me the task of remembering her. It's very important to me to carry my girl with me in the life I have left, and hopefully one day, share her with grand-babies.

Where I am now, seems to be in a strange land where hard days are easier for me. Days when I am immersed in memories, or even in pain, bring an unexpected comfort. I am so used to hurting, and even worrying over Abby, that it doesn't feel natural to be at peace with where she is. I know how to deal with stress and difficulty. It's a very comfortable place for me, although I didn't realize it until now. I may not enjoy living that way, but having lived under such extreme circumstances the last three years, I understand it.

I don't understand okay yet. I almost panic for a split second. How can a mother laugh without her daughter? The days that continue to move me further away from overwhelming grief are scary. Who am I if I'm not caregiver to a very sick child?
Abby's care was all-consuming, and I am thankful I was able to be there for my daughter in that way. I miss her, and I definitely miss taking care of her. I miss being so purposeful each day. I know that's crazy, because in the middle of it, I was exhausted and just wanted it to be over for all of us.

Every day, I laugh with my kids, hold Emily, wrestle with dogs, make dinners, hang with my husband, and basically live life. An okay life. Even a good life. Many days, a happy one that doesn't seem like it should be. Days that leave me wondering, if okay will ever feel okay.

It's an addiction of sorts. That need to be in a comfortable place. I don't think it's healthy or biblical to hold on to pain. I wish it wasn't comfortable to hold on to it. I feel like Abby is more present in the pain, and that is NOT the way I want to remember her. Comfortable places really are addictive. Isn't it crazy that those places are sometimes where we don't even want to be?

I believe that's why we continue to pattern back when God consistently tries to move us forward. Comfortable always feels right, even when it's wrong.

So, I still wonder, when it comes to Abby, is okay okay?


 

God things

I am a terrible blogger, not because I haven't written anything this time, but because I can't finish a single post.  That means I have about 5 waiting, which also means you all will be tired of me soon. 

I had the absolute best, sweetest, most wonderful of times in Florida.  I love my church there so much.  Seriously, if you don't have a church in Florida, immediately carry yourself to Crossings! 

I was able to spend time with friends, ate at all my favorite places, and even hit the beach one day.  That is why my burned legs hurt today, but completely worth it!  I love the beach. 

I felt so thankful and blessed to be asked to share my story.  I thought it would be easy, because I knew them, but because I did, I really wanted to do a good job, which made me nervous.  I also didn't think it would be so hard to talk about Abby.  I teared up a little and my nose ran, and I didn't bring tissues up  with me.  Please do not ask me why I would forget such a thing, because who in the world knows? 

I also had trouble transitioning from Abby's death to my next topic. What is so frustrating about that is that when I wrote my talk, I had something, but when I was actually there, I forgot it.  I am learning, and I hope I have the opportunity to share our story again.  My heart is definitely in Women's Ministry.

On my way home on the plane from Orlando to Atlanta, I was really praying about what God wants me to do next.  I'm feeling out of sorts, and really wanted some sort of confirmation that I'm on the right track. 

On the plane from Atlanta to Greensboro, I sat next to Chris Adams who happened to be the speaker of the You Lead conference (a Christian Women's leadership training)that happened to be in Greensboro Thursday and Friday of this week, and also still had spaces available.  I went home and immediately signed up.

I gave Emily's nurse Friday evening off, and didn't even look at the schedule before I registered.  I thought God gave you this, take it, girl!  Then, because I'm me, I panicked a little.  I found the schedule page, and guess what?  Thursday is an evening schedule, and Friday ends at 2:30pm.  It's perfect! 

I am so excited because I know this was a gift, and my husband immediately said "yes."  So thanks, honey :)

Emily and Sarah will be home soon, and I can't wait to squeeze my babies!!  I missed them, but loved the time I had. 

Thanks so much to Crossings, who continues to help me grow in the Lord through overwhelming kindness, truth, and the love of my sweet sisters.  <3 p="">

Monday

I'll be in Florida Monday speaking at Crossings Community Church, if you are in the area, I'd love to see you!

I'll be talking about faith, our journey with Abby, and special needs children. I'm looking forward to sharing my heart and my girls with you.

See ya there :)

7 months

Love.
Tears.
Joy.