This Too Shall Pass (And It Does!)

Parenting isn't easy--no one ever said it would be.  Life is stressful enough on it's own but when you add a sick child to the mix it just seems to get crazier. Today, I added three sick children to the mix.  And, honestly, it was just so hectic and the kids were so demanding that I didn't have time to stress . . . well, not too much.

This week has been a long one in the Astley house already (and it's only Tuesday!).  I took Alex to the doctor on Sunday for a high fever and we had two days of going back and forth trying to decide if he needed to go to the ER for dehydration.  We would come close to taking him and then he'd keep water down.  Back and forth, back and forth.  Today Kaitlyn and Logan both woke up with high fevers and horrible coughs. I took them to the doctor thinking they had what Alex has.  Kaitlyn seems to always have breathing issues anytime she gets any respiratory ailment.  We have been the ER several times in her short life and she was hospitalized for it once when she was 10 months old. Her breathing concerned the doctor as well.  She wanted to give her a breathing treatment but they were all out so she watched Kaitlyn breathe for a while and kept telling me how concerned she was.  She finally said, "I'm going to give her a steroid and that will really help with the breathing, but if she wakes up from her nap and she's still struggling take her to the ER."  (Cue dramatic music!)

Kaitlyn fell asleep in the van on the way home so I just carried her inside and put her in her crib.  She slept for well over 3 hours and when she woke up she was still having some breathing issues.  The steroids we were given for her were pills.  On the bottle it said to crush all 7 pills and mix them into a food that Kaitlyn likes and will eat.  That is what I did.  Alex and I tried for about 20 minutes to get her to eat and she wouldn't.  She cried and cried.  I was texting Jacob and praying and realizing just how tired I was.  Alex, in a very sweet tone, said, "Little Mama, why don't you eat that good food?  It's so good and it has medicine that will keep you out of the emergency room."  He wrinkled up his cute little nose and shook his head and said, "You don't want to go there.  It's no fun."  She just looked at him.

We sat there for a few seconds watching Curious George with Kaitlyn. Suddenly Alex whispered, "Mom!"  I looked at him and he pointed at Kaitlyn.  She was eating.

And here's the cool part (at least for this tired mama who thought an ER trip was in her schedule today).  She ate most of it.

She started drinking water from her sippy.  Then, she started talking about things she saw on the TV and even started bossing Alex around. She perked up and started acting like Kaitlyn. Her fever is down to around 102 and it looks like we might have missed out on yet another trip to the ER.

Logan's fever is around 101 and he has been asking for food and more water all day.  Things are looking up! I had so many friends and family members text me, message, and call to check on the kids.  Thank you for your sweet words and for praying for my crazy little gremlins.  They all seem to be feeling a little better.  I pray they continue to feel better until they are well--and then I will pray that we get to experience what WELLNESS feels like in the Astley house for more than a few days.

You See "Special Needs," I See A Super Hero!

I had a conversation with another mother this morning.  She was asking about Alex.  It is funny how people will stumble over their words; unsure of how to ask questions because they don't want to offend me. They watch him struggle to do something that a 9-year-old boy should be able to easily do.  They hear him talk and stare and ask, "What's wrong with him?" I shared that Alex has all three forms of Apraxia, he also has Ataxia and all three of my children have a bone disease that requires surgeries and possibly other "forms of recovery."  Said mother was quiet for a couple of seconds and then she sighed and said, "I don't know how you do it.  I don't think I could do it. It must be so hard! I'm so sorry."

Honestly, it's not hard.  Everyone prays for healthy children--we did the same.  While all three children require surgery and Alex requires therapies and specialists--my children ARE healthy.  They don't have a terminal illness and are happy and healthy gremlins. For this, I am thankful.

Alex can't play sports because of his legs and other issues with his bone disease. He is fine with this because the Apraxia and Ataxia make it difficult for him to perform certain tasks.  Logan doesn't want to play sports because Alex can't.  We spend so much time at therapies and doctors appointments that we are all okay with this. All three children have had surgeries and there will be more surgeries in our future.  Alex's legs are becoming a concern and we will start dealing with solutions (surgery, leg braces, etc.) in the near future. Alex's issues do affect school work and his learning, but he is a hard worker and he is very determined.  We couldn't ask for a better kid! He has to work twice as hard as other kids and he does get overwhelmed at times, but he always stays positive.  It is one of the MANY things I love about this boy!

"I don't know how you do it.  I don't think I could do it!"  You say this because you don't have to do it.  If your child had certain issues you would be able to do it. We have been doing it since Alex was about 18 months old--he's 9 now.  It is just life for us--it's our normal.  Having a special needs child just makes you look at the world a little differently.  Little accomplishments are cause for big celebrations.

He is perfect.  He is beautiful.  He is SO smart and so funny!  He is such an awesome kid and I am so blessed to get to call him mine! (I'm blessed to have all three of my happy gremlins!) You should look past his special needs and see the awesome person Alex is! There is more to him than his disease or special needs--so, so much more! So, don't sigh or shake your head, don't feel bad for us.  Don't act like we're special people because of our circumstances--this isn't the case. And most of all, don't feel sorry for us.  There is no reason for that.  I'm not sorry!  I love my children just the way they are and having to deal with medical issues and overcome obstacles have made them stronger and have taught us, as parents, how to be positive and how to be thankful for so much--including three children with bone diseases and a special needs child.

You give me that sympathetic look.  You see a boy with special needs.

I see a super hero.

Be Thankful Always

My boys are really good boys, but we have reached an age where they don't really have the best reactions when they don't get their way.  Alex has started stomping away with an angry expression on his face and Logan will say, "WHAT?" in a hateful tone when he doesn't get his way.  They are typical kids who wish to express their feelings and their disapproval. Just like adults, they get so hung up on what they don't have or what they can't do and overlook the many things they do have. I have been trying to remind them of this as often as I can because, let's be honest, even though life tends to throw some curve balls, for the most part, we are very blessed.  Jacob and I are teaching our children to look at the world in a different way--to look at their lives in a different way.  Instead of, "I don't want to eat this, it looks yucky," we are encouraging them to be thankful that they have food to eat.  Not everyone can say that.  My boys are now eating foods they never would have eaten in the past. They realize some people don't have all the food they have and they are (dare I say it) thankful. Instead of whining about game systems and toys they want (but don't have) we remind them that they have a room full of toys and a garage with a ridiculous amount of game systems, including an arcade game.

The truth is, you are only given one life.  Why not make it a good one?  Why not focus on all you DO have and stop obsessing about what you don't have?  You don't get a redo at the end of this journey.  That's it.  I want my children to be positive.  I want them to be encouraging, respectful, helpful, caring and strong.  I don't want them to be lazy or selfish.  I don't want them to believe that they deserve everything they want--I want them to believe that they deserve everything they have; to know that they have everything they need; and to be happy with what they have been given.  I know too many people who freak out over every little thing.  People who seek out drama and reasons to be unhappy.  Why?  Is that really how you want to spend your one and only life?  Not me!  I don't want it for my children either.

There is always something to be thankful for.  Always.

The Life of Alex

As Alex gets older the school work gets harder for him. We are struggling to get through homework, reading, and even every day tasks. Alex has started putting his head down on his work sheet when we start homework (after being at school all day and then going to therapies).  He will say, "I had a really hard day today."  He will look over at Logan who finishes his homework in a really short amount of time and he gets frustrated. Reading comes easily for Logan.  It is difficult for Alex.  Writing and math seem easy for Logan and Alex struggles.  It takes us anywhere from 30 minutes to an hour to finish homework each day--depending on Alex's mood and how much work he has to do.

While he does get frustrated he never gives up.  He grunts, kicks the bar, taps his pencil against the bar or table.  Very little comes easily for Alex.  He has to work a lot harder than most children--a lot harder than his little brother--to get things done. Tying shoes, riding a bike, cutting food, writing, even speaking . . . things we take for granted every day are difficult for him to do. While he does have days where he is emotional and frustrated he spends most days just taking things as they come, doing his best, and just "going with it."  He has this personality that has really thrived since we moved to Perkins.  He will do things now just to get a reaction out of me (so much like his daddy).  He has started aggravating his siblings and going out of his way to be funny and make us laugh.  He has also developed a sneaky streak to try and get out of doing things he doesn't want to do. When he gets caught he bats those beautiful eyes and gives you that adorable smile in hopes that you will melt from his cuteness and just let him get away with it.  It doesn't work, but you have to give the kid points for trying!

I watch him encourage his brother and take care of his baby sister.  He is always there with a hug and an "I love you--and even though he acts like he's too cool for just about anything, he has a big heart and he will give up things he has, things he loves, just to make some one else happy.  I've seen him do it time and time again. I have watched him work long and hard on assignments, putting that eraser into overtime.  I have seen him beam with pride when he finally finishes or does well at something in school.

So many people are posting pictures on Facebook of their children and saying, "This is the face of Apraxia." Alex IS the face of Apraxia.  He is the face of Ataxia.  He is the face of Osteochondromatosis. He is also the face of Alex.  A son, a brother, a friend and an awesome boy who should have a cape permanently attached to him each and every day. He is my super hero and I truly believe he is going to do big things some day.

Look out world!