Fighting to Save My Kids' Future

The past few weeks I have struggled to decide what to put in this blog entry because I do not want to force an extremely important personal topic onto everybody else. The heavy use of social media makes this nearly impossible anyway so I thought I'd give it a shot.

Huntington's Disease (HD) is a neurodegenerative disorder that is genetically passed from parent to child. If a parent is a carrier, then the child has a 50% chance of becoming one as well. If the disease is in your genetics it is a matter of when, not if the disease will manifest.

HD robs people of everything they have. Twitches and shaking get more pronounced as memory and mental acuity starts to fade. Eventually the person loses all motor control and mental awareness and essentially disappears before your eyes. The length of this process can vary but the earlier it starts to manifest (typically in mid 30s), the faster it progresses. Everyone around him/her see the person they knew melt away in a very horrific way until nothing is left. It isnt a gradual aging process but a process that occurs in what should be the middle of life.

Me and my best friend.

Feel free to read more here: http://goo.gl/kbyafl. It is a horrific disease for everyone that is touches

Emily's grandmother had 4 sons, 3 of which were confirmed to have Huntington's Disease. The 4th (Emily's biological father) died in his 20's before HD was confirmed. Until recently we did not truly know if Emily was at risk or not. Earlier this year Emily's younger brother was diagnosed with HD, meaning Emily's father indeed was a carrier: She officially has a 50% chance of having HD. While that is difficult enough, it also means our children have an increased likelihood of carrying the gene.

Anyone who knows my wife knows her need to be in control of the situations. This has mostly come from having this impending disease hang over her head for her entire adult life. She stays up nights, pacing back and forth worrying about what will happen if she does indeed have HD. How will she handle it? How will I handle it? How will we take care of the kids? When would she stop recognizing me and the kids? How would I explain that to them?  HD encapsulates her biggest fears into one horrible potential reality of losing herself and all control.

The most important ladies in my life.

Despite always knowing the risks of having HD in our family, the reality of the possibility hit me the other day. As dramatic as it sounds, it is possible that I would watch my wife and my children suffer and die from the same disease. Each of the most important people in my life could deteriorate to a point where they can't take of themselves and have no idea who that "stranger" is that keeps helping them. The most important role I can fill if my family has HD is emotional support and eventually the disease will even steal that from me. I would be helpless to to help those that mean the most to me and it breaks my heart in so many ways. I can't handle that thought.

I hope that Emily wins that 50/50 gamble and we will continue to live our lives as if she did. We decided early on in our marriage to not let that hang over us. However we know the possibility is there that Emily has HD and there just isn't enough known about the disease at this point to hope for a sudden cure. We have read of recent breakthroughs that give us hope that a cure could come one day, but know a lot of money is needed to continue the effort.

The best smile in the world.

Most of Huntington's research is directly tied to other things and/or is privately funded. Without our help, any or all progress will be probably accidental or slow growing. I will never give up on helping fund this research because of its personal importance.

It hurts to think a cure may not come in time to help Emily if she does indeed have it. It agonizes me to think a cure may not come in time to help my kids. I will do anything I can to help stop that possibility from happening. I will never stop fighting for them. It is all I can do.

A little me, for good or bad.

This post is not meant to try and manipulate anyone into donating, there are many worthy causes out there that are personal to many people. I just wanted people to know why I am so vocal about it. Wouldn't you be?

Seth's First Soccer Game

I could have easily called this "Emily's Saturday Workout" because I think she ran the most of anyone on the field. Most parents look forward to the day when their kids can start sports and we were not different. We expected tears and hissy fits but we underestimated Seth's capacity to melt down....greatly. 

 

We were off to a rough start when the league provided Seth with a parka instead of a jersey. Add in the need to wear shinguards and high socks for the first time and you get one very unhappy little boy. I actually started out on the field with him but after 5 minutes of me simply hugging him, Emily tapped in.

 

Emily got Seth's feet to touch grass. Mom 1 - Dad 0.

While Emily was able to get Seth (after a few minutes of coaxing) to actually walk around the field with her, he wasn't thrilled by it. In fact she had to carry his personal soccer ball around as a bribe. Bringing his incorrectly sized bright orange ball was just one of many bad Dad calculations on the day. 



That kid with the ball could fly (for a 3 or 4 year old). He played a nice European style, complete with an impressively developed flopping technique. He was the match All Star. Notice Emily eyeing the ball intently. She was sick of that kid burning her, I mean Seth....she wants that ball.

Emily was fantastic with him, always being positive and encouraging. Seth was beginning to get more and more comfortable playing and even decided to go for the ball once. Unfortunately he chose the moment when he was outnumbered 3 to 1 with charging 4 year olds coming at him.



This shot doesn't bode well for Seth. Even Emily is kind of steering clear of the collision that is coming.

He got leveled. Destroyed. Anihilated. He put himself out there for 1 play and he discovered just how small he was compared to everyone else.

The best part of that situation was the support the other parents were trying to give me as Seth struggled to enjoy the game. Each had their own story of the difficulty of youth sports and promised me it would get better. As Seth decided to go for the ball, they all got really excited and looked at me with huge smiles on their faces. Then Seth was flattened and you heard a collective groan. One parent managed to say "That was not the best moment for him to go for the ball". After that, nobody said anything to me and tried to pretend I wasn't there. It was an understandable awkward situation.

This is my favorite shot. Why? Because it is blurred....meaning Seth was moving. I wish I could have done a video of this because he made it about 5 feet before he stopped and panicked when he couldn't find Emily.

After watching a bit of the game on the sideline Seth was able to go back on the field. While he stuck close to Emily and made her carry him most of the time, he did have a moment or two were he was confident enough to wander after the ball. I suspect a few of the times the other kids around Emily and Seth simply pushed between them and forced them apart.

Seth was more worried about someone trying to steal his mommy than where the ball went. Notice the size difference between Seth (3rd from the right not including Emily) and the 14 year old pretending to be 4 standing right next to him.

One thing about Seth is that when he reaches his limit, it isnt a gradual decline. He just stops. He was spent, emotionally and physically. Apparently being held by mommy while walking around the field just wore him out and he went down for the count.



And he was done. Not just tired or grouchy....done. He could have atleast collapsed about 5 feet to their left so that he could be protecting the goal. He hasnt quite developed that sports sense yet, it will come.

It was a pretty rough first game. Everyone had comforted us ahead of time, saying that all kids that age mostly cried and didn't want to be there. Nope, just Seth and 1 other kid. That is ok though. He will get used to it and hopefully start having some fun. If not, atleast mommy and daddy will get a good Saturday Morning workout and some orange wedges.

Sloane Update

I need to post a Sloane update.  She is almost 6 months old and I feel like the time is just flying by!  Here are some pictures and an update on her progress.

In early May she got some crazy weird tummy bug.  She threw up once at her babysitter's house and then again several hours later at home.  After that she just didn't want to eat anything.  (I don't blame her!)  But it really started to worry us when she wasn't having any wet diapers.  And then her cute little soft spots started to look a little sunken and I knew she was getting dehydrated.  We were going to take her to the hospital but out of the blue a few days later she started eating again as if nothing had happened.  The best part about it is that she stayed as pleasant as could be throughout the whole ordeal.  She has been such a good baby! 


Even during her sickness, she was super happy.  But I did capture this moment when she was giving me a dirty look.  She wouldn't even crack a smile for me.  I think I was just bugging her when she was trying to sleep.



Happy Mother's Day to me!  Sloane was finally feeling better! 
Love these two kids!

I love this picture because she's missing a sock. My mom has a few pictures of me like this as a kid.

Waiting at the doctor office for her 4 month immunizations.  She was happy as a clam and had no idea what was coming. 
But even after she got her shots, she didn't cry too much. 

I had to take a picture of her crying.  Because she just didn't do it very often as an infant.

Sloane at 5 months. 
She is starting to lift herself up so high when she lays on her tummy. 
I love those big blue eyes!

First time eating solids around 5 1/2 months:  Rice Cereal. 
She seemed neutral about it.  Didn't hate it.  Didn't love it.

 Around 5 months old Sloane really started to move a lot.  She constantly wanted to sleep on her stomach but she wasn't very good about turning her face to the side so she could breathe well.  I had many sleepless nights at that point because I was so worried about her.  I would wake up at 2 am, go in her room to turn her face, check again at 3 am...then 4 am...it was a pretty rough stretch for me.  So Clint's boss offered him some great night vision cameras that she no longer needed.  I was able to just turn on the monitor right in bed and make sure she was ok.  These cameras saved the day.  (They were also pretty fun to have because we put a camera in Seth's room and would watch what he would do after we had put him to bed for the night.)



Sloane...face down in bed.  How she has survived...I don't know.



Sloane's hair is getting so long.  I am not good at doing hair.  I can barely manage my own.  So she will be wearing random weird pony tails for awhile.  After this pony tail day, Sloane's babysitter officially dubbed her "Pebbles" from the Flintstones.

Clint's favorite time as a daddy is when they are asleep in his arms. 
Sloane loves to fall asleep on him.

She's just taking a little cat nap.  What a life!

Grandma asked if we got any reception off these little pony tail antennaes. 

I just love those eyes and chubby little cheeks!

Seth 3rd Birthday

3 years down, only 15 to go! Seth turned the big 0-3 and had a great time. Besides the normally small family gathering we also ventured to the dinosaur museuem at Thanksgiving Point...not sure why we thought he would like a museum at 3 years old but it was still a good experience.

Museum

 

This trip started out rough when I made the idiotic mistake of saying it was Seth's Birthday to the worker. So instead of Seth being free (2 and under) I had to pay $10 for him. Seriously, $10 for a 3 year old? What crap.





Once Seth noticed the dinosaur, he insisted I protect him. I appreciated his faith but didn't have the heart to explain to him that I would do nothing to bother the T-Rex except perhaps get stuck in his teeth on the way in or in his bowels on the way out. 

This room was pretty fun. I think the point was to demonstrate floodplains or something...we just made a dinosaur fort. Seth made it a goal to gather all the dinosaurs from all the other stations. What can you do?

This was a convenient sign for the photo but caused an issue when Seth didn't realize it wasn't really for him. He made a beeline for all the fake presents on the display next to it.


 Dinner

We hit up Seth's favorite food joint for dinner (Chick-fil-A). I didn't take many pictures because it is very difficult to do without looking very creepy. For some reason parents don't like strangers taking pictures around their children.

 

  



Not much exciting to add to this shot.

 

Gifts and Guests

 

To cap off the day we had some family over for a small gathering to accumulate more toys for Seth. I admit to being a little jealous.

 

A cute little motion montage made by Em. She is much more artsy than I am.

One of the few days of the year where Seth is allowed to eat all the sugar he wants. I welcome the sugar coma that naturally follows.

Sweet and simple decorations...that was my contribution.

Listen, we know Sloane is adorable but it is Seth's birthday. Pay attention....grandparents are always distracted.

Emily's cute gift table. To my, I mean his disapointment, nobody brought the 80 inch TV he asked for.

Seth's Flag Day cupcakes, apparently only good for the frosting. We threw at least 5 away with the frosting licked off but the actual cupcake left untouched.

We dove deep into my past to order a Baskin Robbins Ice Cream cake. Seth wanted dinosaurs (notice a theme) so we ordered a cake and put our own toys on it. Yeah, we rock.

Papa, Janet and Sloane. Both my dad and Janet were good sports and wore the birthday hats while Sloane simply had no choice.

 



Another Picture. Boom!