This was not a choice...or was it?

A couple of weeks ago, I had some alone time before heading to a tree dedication at Caitlyn's school. They were dedicating the tree and flower garden planted in memory of a little girl named Annie who passed away. We all miss her very much!

While I was alone, I stopped at my old job from before Caitlyn had a diagnosis. I had worked there for 8 years, and met some really cool people! I got to see a couple of the gals I used to work with, and chat a little. The conversation, though, through me off a bit.

One of the gals said "I really admire you...I couldn't have done what you did." Um, what did I do? I was confused. What I gather from the conversation was that this person felt like I had made a choice to continue raising my daughter once we discovered she had a disability. She asked the other gal "could you do what she did?" Then I'm sure I blushed as they talked about what an amazing mom they felt I was.

But that's just it, I'm a mom. The "choice" I made, which by the way I do not in any way see it as a choice, was to simply continue to be a mom. So many people say "I don't know how you do it" or "you're so strong" or this new one "I couldn't have done what you did." Well, 10 years ago when I was just getting ready to walk down the isle and marry my husband, I had no clue. I was only 21! I didn't even know anyone who had a child with a disability. When I got pregnant, I didn't want to know if there might be something wrong, so I skipped all the pre-natal testing. Looking back, I'm sure I had fears of not feeling like I would be able to handle being a mom to a child would was "different."

That's just it...You don't know until you are handed your baby who might have a disability...You don't know until you sit in that doctors office and find out all plans you might have had are now changing. There is no way to know how we are each going to handle it. I know there was a time when parents weren't given much of a choice. There was very little support from the community, and families were encouraged to place their child in an institution. My daughter was born in 2003, though. This was a different time and it is down right shocking to me that someone would view this as a choice.

If it was my choice, she wouldn't have Rett Syndrome. But it's not. None of it is. It was my choice to become a mom, but it was God's choice that I became HER mom! It was God's choice and Him and I still butt heads to this day because of it. I have yet to figure out why He thought this was for me, or what His plan for her is. All I know is, if this was any one's choice, it was His. So please, when you think I have some super powers, or am some amazing mom, I'm not. I'm just a mom; a mom who was given a little girl with a disability. Walking away from her 2 1/2 yrs into her life was NOT a choice. (and I wish I had all the money in the world to bring into my home all the little babies who's parents saw it as a choice and walked away...) Please don't tell me how strong I am, or how you would never be able to do what I do...I gave birth and made a commitment to raise my child. I am not any stronger than any other mom that puts them self into that commitment.

Not the way it's supposed to be

I have been having this internal debate with myself for about a week on if I should blog about our current heartache. Really, it's nothing in the grand scheme of life. I guess if I am going to be honest of about the ups and downs of finding balance, I should blog about the pain. I want to start by saying that I love both of my children equally. Feelings are feelings though, and we have no control over them.

When my little boy was born, the doctor put him directly on my stomach. It was an amazing moment, one that I didn't get to experience when my daughter was born. I knew that this was the beginning of something wonderful. My heart ached though. I got to hold him right after he was born, but I was sad for that moment missed with my daughter. I held him and the only thing I could think was "is he breathing???" I longed for this experience, I longed for a healthy typical child.

At 10 days old, everything around us came crashing down. This was Gunner and Caitlyn on that morning...
It was a Sunday, and everything seemed normal. Gunner nursed at around 4pm, then when I went to wake him again (we were dealing with some jaundice still, so feeding every 2 hours during the day) he wouldn't wake up. None of the regular tricks worked. We called 911, and he was transported to the ER. We never knew exactly what happened, but I never stopped worrying.

That was over a year ago. I have worried about everything he hasn't done, and everything he has done. Every time I take him to the doctor, our wonderful pediatrician assures me he is fine. I was finally starting to relax, and enjoy him. He is an amazing little boy, and the relationship that is building between him and his sister is an absolute joy to watch.

Today, we face a new challenge. We don't know yet exactly what is going on, but our son has been referred to a cardiologist. We are of course praying to find out it is nothing. For now, my thoughts are working over time at driving me crazy. The emotions hit, and I get angry. I get scared and angry that my son is having struggles of his own. Then I get angry...angry because he is supposed to be my healthy son who is developing typically with no concerns. Then some well meaning person tells me "remember, God doesn't give you more than you can handle." To which I respond, "well, I guess God and I aren't in agreement right now," or even "maybe He doesn't know me as well as He thought."

Praying for healthy, happy children tonight...

Adding to the Family

When you start a family, I think that most people have a plan. We were no different. In 2003, we had our little girl. She was everything you could hope for in a baby. She slept good, and rarely cried for her first year. Our plan was that when she was about 2 yrs old, we would start trying to get pregnant with our second child. We had no idea what was in store for us.

When she was just over 18 months old, she entered into Early Intervention to help with some developmental delays. We still had no idea, but as she approached 2 our once happy easy going baby girl was crying...a lot! Not knowing what exactly we had on our plate, we decided to put off our decisions to add to our family. It was what seemed best at the time. We can't change the choice we made, but looking back I sometimes wish we would have gone ahead with our plan. I sometimes wonder if it might have made the tough times a little easier.

When she was 2 1/2, we finally found out what the name was to everything. Rett Syndrome. Having a name didn't mean we knew any more about what was on our plates, and what the next few years would bring us. We continued to put off our decision, I think for fear of the unknown. It was all so new to us. All we knew for sure was that our little girl was frustrated as her hand use was slipping away, she had trouble feeding herself and now she was developing seizures. The idea of adding another child to the mix was terrifying!

Somewhere in 2007 or 2008 when she was around 4 yrs old, we started getting our happy daughter back. The smiles started to out number the tears. What a joyous time this was! It was then that we decided that once she was in school full days, we would have the discussion again about having a second child.

There are no promises in life. You just have to have faith that God doesn't wait too long to show you what the purpose is for whatever it is he has given you. In August of 2009 when we found out I was pregnant, it was a bag of mixed emotions. My mind was flooded with what-ifs. A lot of people asked us if we were going to have genetic screening done. Honestly, the thought never crossed my mind. I had been planning this baby for years. We already had a feeding tube and seizures...what else was there? My husband went to one appointment with me. When the doctor asked about our other children, we told him about our angel girl. He said "are you interested in genetic testing for this baby?" It was my husband who said to the doctor "No, it won't matter. We know the world of disability. It is the typical world that is the unknown for us."

I remember the pure sense of relief when we found out we were having a baby boy. Rett Syndrome occurs in mostly girls, although I know of some pretty strong little boys with Rett too. I couldn't wait to hold my baby boy, and count his fingers and toes. Our family was going to be perfect! And, it's funny how when you end up with one of each everyone asks "so are you done now?"

No one prepares you for what it will be like. After having a child who struggles with every little thing she learns and has lost some skills along the way, you begin to realize how precious life is. I never expected that something so simple as crying when he was hungry would bring be to tears. Not those overwhelming new mom tears, but tears of joy. My baby girl rarely cried, not even when she was hungry. As he hit milestone after milestone, I rejoiced. We don't take anything for granted around her. We even celebrate him getting into things, because he can! His hands work just the way he wants them to, and he uses them to get into all kinds of mischief already!

My friend Kelly has an amazing little girl with Rett Syndrome. She also happens to have an amazing little boy with Down syndrome. Our journeys have been different, but one thing is the same. We know how precious time is. We know how much energy is put into that decision to have a second child. Through watching the struggles that Rett Syndrome has brought to our girls, we have learned that every single achievement from every single child is a blessing and should be celebrated. She is an inspiration to me on this journey, as she continues to find the balance in her own life. She keeps up blogs on both kids, and advocates for them daily. Take a moment and read what she had to write recently about celebrating achievements.

For any family, I'm sure the decision to have another child isn't one that you go into lightly. When you have experience with things not working out the way you had plans, it makes that decision all that more difficult. Then again, things never work out the way I plan it. When we made this decision, we did so knowing that there was always a chance. We did so with faith. Now, we have two amazing children who love each other and are learning together. We feel very blessed!

When One Person's Humor Becomes Another Person's Pain

Part having a child with some medically complex issues is going to the lab for blood draws on a fairly regular basis. Every three to six months I take my daughter in to our nearest clinic and have her blood drawn for a complete blood count, and to check the levels of two of the meds she is on. Pretty simple, really. They have always been very nice, and it is a simple in and out process...Today, it was different.

On the bulletin board next to the lab chair, there were some pictures. Most were silly animal pictures, which would lead one to believe that whoever posted these pictures on the wall thought they were funny. What happens when what someone thinks is funny, is degrading and insulting to another? Our country is founded on freedom, and the freedom of speech is one of those. So, does that give people the right to humiliate others? Does it give them the right to make others feel like they are the butt of all jokes? Or is it sometimes complete ignorance that people would even think something is hurtful? I would venture to say more often than not it is the latter. Many people live in a world that is centered around themselves. They don't stop to think for a second that people might be offended or hurt by the things they say or do. Why should they? It doesn't effect them, people shouldn't be so sensitive, if you don't like what people say walk away...The excuses go on and on.

Now, I love my daughter's doctor and we have never had a bad experience with any of the staff in any of the clinics we have gone to. This clinic isn't even the one that her doctor practices in, just the same organization. I don't even know who the sucker was that posted the picture, but I'd think they need to attend some extra sensitivity training. I'm just a parent..What if some self-advocate with a disability came in and saw the picture...and read the words? How many have seen it before me, and been offended but not known what to say? Do you speak up when what someone thinks is funny hurts you?

The image is likely forever engraved in my head...I sat there with my daughter who, for today, I will thank God she can not read...

The picture was of two baby chicks...There appeared to be something wrong with one, who knows maybe it had Rett Syndrome...And the words read..."RETARD: everyone knows one."

Twenty, even ten years ago this may have been a more acceptable joke in society...Who knows when the picture was printed...But it isn't ten or twenty years ago...It is today...It is 2011, in a time when individuals with disabilities and their families fight day in and day out to be equals in society. The pain and the discomfort I felt today was huge. I fought back the tears, as I felt like I was crawling out of my skin...As I hugged my daughter close...

And you can bet I said something! If this joke had been racially based, it never would have been put on that board. I have a dream...That one day my daughter will live in a society where one person's humor isn't the source of another person's pain. In a society where there is no hatred, only equality..Until then, I stand up, and will continue to fight for her rights, and the rights of all people with disabilities. Will you stand up with me and fight the fight?

Surpassing Expectations

Sometimes we don't know what to expect. We plan something, and just hope for the best. Sometimes we miss out because we fear the worst and don't want it to be our reality. Last week we took the plunge. Caitlyn and I boarded an airplane bound for Oakland, CA. We were flying two states away to see some sunshine (and some really cool doctors...we saw the doctors, but the sunshine was a little MIA.)

As we sat on the plane waiting for take-off Thursday morning, just for a second I thought I was out of my mind. Then I looked to my right. There sat my beautiful daughter staring out the window in awe at the people walking around the plane. I knew she was nervous, she had a death grip on my hand. We took off into the air. There was no turning back. Caitlyn and I were headed to California for a much needed break from the every day life at home.

We took it easy Thursday, since we had gotten up around 2:30 am. Friday morning we got up, not knowing what the day would bring. It started with some sad news..had I been alone with Caitlyn, we likely would have spent all day in the hotel. Maybe even all weekend, for that matter. But we didn't. We ventured out. I think back, and I don't know what my expectations were for the weekend. I knew I wanted to have a fabulous time with my daughter, but was willing to make whatever she was able to tolerate fabulous! Well, she tolerated a TON!! We did the Ride the Duck tour on Friday and the Aquarium, the Bay Cruise, a 4-D turbo ride AND the cable cars on Saturday! Caitlyn was absolutely AWESOME through it all!!! Whatever expectations I had for our trip, she hugely surpassed them all!!

We have known about Rett Syndrome and the Natural History Study for 5 years. Here we sat in rainy Washington, and never went down to sunny California because we had no clue what it would be like traveling with a kid with special needs. Everything went perfect!! Now I know...Now I know what my girl is capable of, and I'm never going to say "no, I don't think she can handle it." From now on, we take the world head-on! If something doesn't work, so be it! But, we won't know unless we try!

Go or Stay?

When I was growing up, you didn't see a lot of kids with disabilities in the community. I know they were there somewhere, because they had their "special class" in our school building. I just never saw them at the movies, the store or even the park. Of course, it wasn't something I thought about at the time. Now looking back, I get it. I understand just a little of what went through the mind of parents, and a little of why I never saw kids with disabilities in the community.

Today, with a bigger push for inclusion in schools and the community, you would think that you would see more parents bringing their kids to the store, movies, the mall, or even library story time. Well, here's my views on the problem. The workers in the community today are from my generation. A generation when, although kids with disabilities were in our school buildings, they were not included. A generation that was indirectly taught that kids with disabilities were "different," and in some cases even taught that they were "less than." I'm sure that none of my teachers had the plan to effect the future in such a way. Back then (really, not that long ago...I'm only 30), no one had any idea that they were continuing a cycle of discrimination against a minority group that still has to fight for equality!

So, as a parent, the question is: Do you go out where people may stare, where workers may ask you to tell your child to be quiet, where people might laugh? Or do you stay in the safety of your home where people "get it." A story: My daughter's caregiver and I took the kids to the Children's Museum last summer. We had a great time! It was Caitlyn's first time there, and of course Gunner's too, though he was only a few months old. Caitlyn had a blast, and there were no melt downs! I thought "this is wonderful, let's go get lunch!" Should I have known better? Yes probably, but I was on a high having a great day with my wonderful kids! So, we went to Burger King. We got our food and sat down. I took Gunner to get his diaper changed, and that's when it all ended. We came out of the restroom, after discovering there was no changing table, and heard it...The screaming had started. We turned the corner and saw it...The head banging had started. Caitlyn was in the midst of full on meltdown. She had reached her limit. It was time to go home. As we got bags to put our food in, I noticed something. It angered me and saddened me. Every single employee behind the counter at Burger King was staring. They were staring at my 7 yr old in the middle of complete meltdown. I was embarrassed. Not because my daughter was screaming. No, I was embarrassed for the employees and their complete lack of respect, tolerance and understanding. Being the out-spoken mom I am, I said something. Of course I could have been nicer, but my heart was hurting for what my girl was being put through. I looked directly at one of the staff and said "do you have a problem?" He looked at me shocked and said "I...no." I said "Then do you mind not staring? My daughter has a disability and is non-verbal. She's having a tough time, and you are making it worse by staring. You are embarrassing my daughter! Learn some tolerance for people who are different than you!" We packed up and left. It is scary. We could have stayed home that day...We could have gone through the drive thru. We could have done a lot of things. Instead, I decided to try and make it a "normal" day full of "normal" events. By taking the chance that someone might laugh or stare, we had a GREAT time at the children's museum. Yes, they stared. But I had the opportunity to educate people about disabilities.

There are so many disabilities, especially in children, that you can't tell. A child with Autism looks just like a typical child the same way. They may talk a little different, or scream because they don't have the words. I think that many people in the generation of todays adults think "disability" and they see a wheel chair, someone who is blind, or someone who is deaf. They don't see a common looking child, and think disability. So, as difficult as it is to face it time and time again, I say Go! I say take the chance once in awhile to be part of the commnity with your kids. Who knows, by taking that chance you just might educate someone about your child and their disability.

What is "normal?"

My 9th grade English teacher had a sign on the wall that said "normal is a myth." He always encouraged us to look beyond society norms to do whatever it was we wanted in our lives. He was an interesting character. He also had a "Kill the TV" sign.

My dictionary defines normal as "conforming with or constituting a norm or standard or level or type of social norm." Have you ever looked at a definition and thought it needed to be defined too? So, I started looking for other definitions, in hopes of being able to find a definition that would define my own life as normal. Guess what? Society doesn't see my life as "normal." The only thing that fits the society definition of normal is my marriage. And that's only because we are a hetero-sexual couple. (disclaimer: I don't view any type of marriage as normal. Marriage is marriage, and society really shouldn't have a say in who can marry who.)

I finally found a definition that defines my life as normal!
–adjective
1. conforming to the standard or the common type; usual; not abnormal; regular; natural.
Since this definition doesn't say common type of what, I can only believe it is categorical. For example, eggs. The common type would be white, non-organic chicken eggs. So, I do hear by define my family as normal. We have a common family with a child with special needs. We meet the standard type of "special needs family." (but then you have to wonder...if 80-85% of families end in divorce, does that now make us not normal because we are still married? Maybe we aren't the common type.)

And so, I am lead back to Mr. Jamieson's 9th grade English class. Normal is a Myth. Since the common type of things is changing all the time, how can we define something as normal? If we all started buying organic brown chicken eggs, the white one's would no longer be considered normal. So there you have it. If you define normal as conforming to the common type, and the common type is constantly changing, what are we supposed to conform to? I think that everyone should sit down and define your own normal. What's wrong with having 6,775,235,741 different definitions for one word?

What about the rest of us?

Five years ago, when my oldest child was diagnosed with a rare neurological disorder called Rett Syndrome, I was devastated. We had already been balancing Early Intervention play groups, speech therapy and occupational therapy. Then we had to add to that balancing neurology, genetics and developmental pediatrician appointments; not to mention the add of managing seizure's a few months later.

I cried a lot in the first year after she got her diagnosis, and still do from time to time. I adjusted to the new "normal," as much as I could as time went on. One day somewhere in the journey, everything around me started to fall apart. We were given a diagnosis, referrals to new doctors and instructions to continue Early Intervention services. All those doctors and therapists we saw, and no one prepared me for what was to come next.

No one told me that having a child with special needs would effect every single aspect of my every day life. I had no clue the effect it would have in my relationships, my time, my state of mind, my ability to stay in control of my emotions and my dreams. Some doctors do a great job of gently giving parents the news about a diagnosis. Most make sure you have all of your ducks in a row to meet your child's new set of needs. Then, they fall short. Parents are left to discover for themselves that this new world that they are about to discover is going to turn their own world upside down. No one tells you that the divorce rate in families who have kids with disabilities is way above the national average. Just think...Some reports say that in a family with a child with Autism, the divorce rate is 80-85%!

Where do we go from here? Who do we reach for to make sure our own needs are met? How do we balance the needs of our child, with the needs of the rest of the family? How do we keep the emotions at bay, and remain in control of our own lives? I hope that by sharing some of my own journey (and other's if I can talk them into it), you will be able to get some of those questions answered. Until then, remember that the world of special needs is your new world. Instead of leaving the old world behind, begin the journey of merging the two worlds.