Happy Birthday, Ella Grace

On the eve of Ella's 5th birthday, I am thinking about where we were at this exact moment five years ago. I went into labor around 8:30 in the evening and we went to the hospital. We were already aware that she would be born with some type of genetic issue or syndrome based on the findings of an ultrasound I had at 26 weeks, but we didn't know exactly what it was or how she would be when she was born. Since I had spent the past 10 weeks Googling every syndrome known to man, I had had a good amount of time to get used to the idea of having a special child, as much as that is possible anyway. I think the pain of labor did a good job of keeping my mind occupied, and at that point we were just ready to "know".

It wasn't until 4 o'clock the following afternoon that the doctors announced she would need to be delivered via C-section and less than an hour later she was finally here. I remember immediately asking John, "How does she look?" but can't for the life of me remember what he said. I got a quick glance at her in my drug-induced stupor and she was whisked away to the NICU while I was banished to my hospital bed unable to get up due to the surgery.

Now, I understand that doctors often err on the side of "worst case scenario". I guess it's at least in part so they don't imply false hope and to cover their own behinds, but our neonatologist did not have many good things to say when he finally came to my room and delivered the news of her diagnosis. I was handed computer printouts about Cornelia de Lange Syndrome (www.cdlsusa.org) and given a laundry list of the medical problems they had already noted and more they anticipated. All I can say is thank goodness for that little button that gave me more pain medicine when I pushed it. Well, that's until some time in the middle of the night when my epidural slipped out...but that's another story for another day.

It wasn't until the next morning that I really got to meet her for the first time. They wheeled me into the NICU and I saw my tiny, hairy, beautiful baby with a gazillion wires and tubes coming out. At 5 lbs. 1 oz. she was actually a decent size considering her diagnosis and the fact she was a few weeks premature. Despite everything they said was "wrong" with her, she was beautiful. And she was mine. I knew she was going to be okay and that was all that mattered.

Birthdays are always an emotional time filled with a lot of conflicting emotions. I'm so honored to be her mother. She has been through more medically than most people will experience in a lifetime but you would not know it by looking at her. She has a smile that can light up a stadium. She brings so much joy to everyone who knows her, and even to many who have never met her in person. She is honestly the happiest human being that I have ever seen and I could not be more thankful for that. She is resilient beyond belief. She has bounced back from the verge of death on more than one occasion. She endures constant hospitalizations with people poking and prodding and examining her. She smiles at them all. I know that I am biased, but there is just something about Ella. She leaves an indelible mark on everyone she meets and people do not forget her.

But if I'm going to be completely honest about this life with her, I have to talk about the conflicting emotions that come along with having a special child with exceptional needs. Every year that passes, the gap between Ella and her typical peers widens. As a parent it is hard to watch. Not for her, but for me. I know that it is purely selfish because SHE is happy. She doesn't understand all of the things that she doesn't get to do. I really try to not linger there, but I would be lying if I said those tinges of jealousy don't pop up every now and then.

Last week I went looking for a gift to give to her at the party we held this past weekend. The truth is, I could wrap up a toy she has had for years and she would smile just as big when we gave it to her. But I want to be able to get her things even though she doesn't need them or even understand the concept of getting a gift. So I found myself browsing the infant toy aisle for the fifth year in a row and I had a moment. It was obvious upon checking out that I was buying a birthday gift and I was dreading the cashier asking me whose birthday it was and how old she was going to be and imagining the look on her face if I answered honestly that she was turning five. Thankfully that didn't happen.

The occasional pity party is inevitable I think. The trick is to not linger there too long. Accept reality and move on, and above all COUNT YOUR BLESSINGS. I even get angry with myself for going there when I'm fully aware that she almost didn't make it to her 5th birthday and what a gift it is that she did. I know far too many parents who have lost their child and I have to keep it in perspective and cherish every moment. Tomorrow isn't guaranteed for any of us.

I have always loved celebrating any occasion, it's my nature. Anyone who knows me knows that I love a party! So for Ella I try and go all out and make it a true celebration with lots of family and friends because it really is a big deal. It's also a chance to thank those around us for their support of Ella and our family, and we are lucky to have so many people to thank.

The first time I saw Ella in the NICU

Ella Grace at her 5th birthday party this past weekend

Please Don't Tell Me How To Feel

Having a child with special needs is a process. We grieve and struggle with acceptance, though it does not in any way mean we aren't thankful for our children. It simply means that we must grieve the loss of the expectations we had of a life with a typical child, and learn to navigate the struggles that come with having a special one.

No one expects to have a child with severe disabilities or medical issues, so when it happens to you, you feel like your world has been turned upside down. Adjusting to your new world takes time; how much time depends on the individual. For many, it's a lifetime process.

Grief has been described as coming in waves. At first they come fast and furious, but in time they usually begin to slow down though you still never know when the next one is going to hit. So as grief does, never completely leaving you alone.

The five stages of grief have been described as denial and isolation, anger, bargaining, depression, and acceptance. They say we don't necessarily enter each stage in that order, and often move in between the stages over time. I know for me personally, this is true. Even once you accept what has happened, you still fall back into the other stages from time to time.

This is why I ask that you never tell me how I'm supposed to feel. And I don't mean it to sound harsh. I know people just want to help, and are maybe even trying to help themselves make sense of our situation, but it doesn't help us. The process is far too personal and so inconstant, it just isn't possible to know how someone *should* feel. And if we're feeling far from what you say we should be feeling, it can only make us feel worse.

We don't have control over this process and there is no single prescription for dealing with it. We are going to be sad at times. We are going to be angry at times. We are going to be happy at times. But we cannot predict it. All we need is an ear to listen when we feel like talking, a shoulder to cry on when we feel like losing it, and a voice to help us cheer when we feel like celebrating.

What's With The Name?

When I found out we were having a girl, I was over the moon. I really, really wanted a little girl. My mom and I immediately began shopping like fiends. We couldn't resist all of the precious clothes and hair bows and frilly things that you could buy for a little girl.

Even though Ella spent a considerable amount of time in the hospital as a baby, we didn't let that stop us from dolling her up. Every day we were excited to pick out a new outfit and take pictures of her. It quickly became the thing that helped us retain some sense of normalcy in a very abnormal, and often scary, situation.

It wasn't long before the hospital staff took notice of our obsession with decking Ella out. Her nurses were often excited to join in the fun, and people began stopping by daily to see her and check out her outfit for the day. Because of her extreme medical issues, she has always been hospitalized in an ICU (NICU, PICU, TICU) and at some point, she became known as "the best dressed baby in the ICU".

I believe one of the great things about having a special child is that it allows you to have a different perspective and maybe not take for granted the little things that others sometimes might. When we learned that Ella was going to be born "different", we had to readjust a lot of our expectations, but that did not include how we could dress her! It is something "normal" we can continue to do for her when most days are far from typical.

At almost 5, I'm glad to say that Ella still upholds her reputation at the hospital. People still come by to see what she is wearing and what color bow she has in. I think it makes them happy too since they spend their days around children who are sick and injured and not getting to just be children. It adds a little bit of balance and fun to a sometimes gloomy environment.

Our little fashionista in the ICU at six months old.

The "R" Word

I have been mulling over this post for probably a couple of years now. Being tied closely to other special needs families via the internet and social networking sites, I often see blog posts and articles on this subject. Last night I came across another which got me thinking about it once again.

Mental retardation is a clinical term. It was developed to classify individuals with cognitive deficits, historically those with an IQ below 70. Basically, it describes those born with intellectual and developmental disabilities which may or may not be related to a syndrome.

I have always felt that when I did finally post about this topic I would need to be completely forthcoming and admit that prior to the birth of my daughter I, too, had used the term "retarded" in a non-clinical, derogatory manner. I believe there are only two reasons why someone would use the word: 1) they are ignorant about how and why it is hurtful or 2) they are flippant and don't care that it is hurtful.

I fell into the first category. I didn't know any better. I didn't understand why it was wrong to say it. I had never thought about it. I never had a reason to think about it. Then I became pregnant with Ella, and by no fault of her own, she was born with intellectual and physical disabilities. She was what could be clinically described as "mentally retarded". Even though I KNOW it is a legitimate, clinical term, it still hurts me to write that. Why? Because of the stigma associated with the word. Because it's still used so freely and flippantly by so many as an insult to describe something that is dumb, stupid or not worthy. My daughter is the opposite of those things. Her name is not interchangeable with the common perception of the definition of the word "retarded".

I believe a major part of the struggle special needs parents go through, especially in the beginning when they find out their child will be different, is not only grief over the loss of the expectations they had for a typical child, but also grief and worry over how the world will view and treat their child because they are different. We all know that the world can be a cruel place, especially if you possess noticeable differences from what is considered to be the norm or the perfection society makes us believe we should strive for. We see how much more prevalent this behavior is among children and teens, but as we grow into adults it becomes less socially acceptable to treat people this way. We come to know better, probably because we all experienced ridicule at some point growing up and know how awful it feels.

But when it comes to people with disabilities, it is still too socially acceptable to use disrespectful language, and essentially make fun of them, even among adults. Is it because most people have never had a personal relationship with someone who is disabled? It has to be. Because if you have ever known or loved someone who is, you would understand how hurtful it is to hear it. If it's not okay to make fun of people who CAN defend themselves, how is it okay to make fun of people who don't even have the ability to stand up for themselves?

Just like the "N" word, the "R" word has clearly become a pejorative in our society. So why would people purposefully continue to use language that they know is hurtful? Freedom of speech doesn't include hate speech. Originally, freedom of speech was a right given to speak up against the government, to protect and advocate for ourselves. It doesn't imply the right to use dangerous and hurtful language. Just as libel and slander are not allowed to defame someone's character, neither should language that disrespects a population of people who are mostly denied the right to free speech themselves simply due to their disabilities.

People with disabilities were born that way. The same as I happened to be born with brown eyes, it wasn't a choice and it can't be changed. Nor should it. But what can be changed is the way these individuals are viewed and often disrespected in our society - a large part of which is tied to the acceptance and derogatory use of the "R" word.