Amazing results

This used to be a common look...this is Caitlyn post seizure over the summer one day...she had a seizure just before we boarded for our flight...seizures were apart of our life nearly every day. She was fading away...her smiles were fewer and further between...and we were seeing daily seizures and several naps a day...

This smiley face we see more and more of!!!! Seizures are fading, almost completely controlled. How you might ask? Well, the Ketogenic diet has been a life saver for my girl. I truly believe she is coming back to us, and I LOVE seeing her smiles, and hearing her giggles. We do still have some issue with morning fatigue as she is still on 3 meds, but we had no idea how much the seizures were wiping her out. She is more alert, and focusing great at school!!!

Ten Years Ago

I remember 10 years ago this week....I had been sent up to labor and delivery after a non-stress test showed significant heart rate slowing with contractions. I spent the afternoon being monitored, but was sent home with an induction the following week once I hit 37 weeks. We thought we had longer...my due date wasn't until August 23rd!!  But I was secretly excited for the induction..I was high risk, and having to travel 30 minutes to UW for delivery..my biggest fear was going into labor during rush hour!

So ten years ago we spent the week getting everything in place to be first time parents!!!!

Today we celebrated our beautiful princess as she will be 10 tomorrow. I am so proud of the girl she is becoming!

Tomorrow we are beginning a new chapter. She is being admitted to Swedish Hospital in Seattle in hopes of finding help for her seizures. She has been diagnosed with drug resistant epilepsy, and in hopes of finding some control, we are going to start her on the Ketogenic diet and give it our all. I will write about this journey so that everyone can share with us. God willing, we will be home from the hospital on Wednesday.

Two years at a glimps

I think the world of Facebook has made me forget about blogging!  Well I'm back! I wanted to do a journaling of some things we have coming up, but more on that later. 

-September 2011 I went back to school and Gunner started daycare. He was at the center on campus while I was in class.

-October we discussed concerns about Gunner's development at our 18 month check up. This lead to going through birth-3 evaluations. I love our birth to three organization, but quite frankly never thought I would have to deal with them again. Gunner did qualify for services due to a considerable expressive delay. I mourned a little as I came to terms with what I thought would be a parenting breeze.

Things were quiet until the spring...one quiet day at home in the spring ended with a trip to urgent care with my girl. Caitlyn had fallen earlier in the day, and was refusing to bare weight on her foot. Two weeks, two X-ray and an MRI later and there was finally a diagnosis of a foot fracture. With that also came with a diagnosis of osteopenia. 

-we also went through some reflux testing for Caitlyn and ended up having her go through surgery to make it so she could not reflux. Second to the g-tube, it is one of the best decisions we have made for her!

-in October we moved into a nice 4 bedroom house that we share with a very good friend and her son. This move meant changing school districts. I will spare all the nasty details, but 6 weeks in Caitlyn ended up with an arm fracture. We kept her out of school for 3 months then finally settled things in mediation. 

-through the past two years we have done a lot of medication tweaking in hopes of finding good seizure control for Caitlyn. That pretty much brings us to now and our mission to do all we can to give her the best quality of life possible.

She has the worlds best little brother!!!

We LOVE having a yard!!!!

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?