Life Right Now

 The  Flower Fields in Carlsbad .  So beautiful but oh the allergies for 3 of these boys!

The Flower Fields in Carlsbad.  So beautiful but oh the allergies for 3 of these boys!

A week ago, our "little" family was able to take a much needed, extended vacation to Southern California. It wasn't because anyone was running a race - but let me tell you I thought about it - it was just to spend time together, decompress and come back to real life ready for the stressful, emotional time our family is going through right now.  

 He absolutely loves beach towns.  Everytime we visit one, he shares how he wants to live near the beach and skateboard

He absolutely loves beach towns.  Everytime we visit one, he shares how he wants to live near the beach and skateboard

Well, let me tell you I wish we had another week of vacation because the week coming back has been anything but easy. From one of our cars not working to bank accounts being compromised, it has been hectic. Yet, we try and try to find the silver lining, to count our blessings even though at times it seems as if the weight on our shoulders is beyond heavy.  

 He wanted his own picture.  He was upset none of his brothers would build a sand castle with him

He wanted his own picture.  He was upset none of his brothers would build a sand castle with him

We all still have goals on the horizon although with everything we are enduring we have to rethink how we train or what our expectations are for each race. David has Rock n Roll San Diego Marathon and San Francisco Marathon coming up. Yup, you read that right, two marathons within a couple months of each other, although I don't think he plans on setting a PR, but just to have fun. Our oldest, Gabriel will be running his first half marathon in September in Disneyland. Jacob and Elias are trying to find a 5k that interests them (pressure from us parents). I am eagerly looking forward to Seawheeze in August.  Oh and Tink 5k before that! As for Asher, well he is happy to come along for the ride and hopefully we can find a kids race that is short enough for him to do.  Also, we look forward to our 3rd #Active4Asher this year in June (we are excited for this).  For those who may be new to the blog and our "little" Family, read about it here and here. So this is a huge blessing. ALL of us are training for a race, even Asher who less than 6 months ago wasn't walking then he started walking with a walker to now being able to dash down the hallway and not fall. So much growth! 💙 

 He loves the beach and ocean, not so much the wind

He loves the beach and ocean, not so much the wind

 Bucket list item to visit here,=.  So glad the boys had fun and I got see all the colorful Dahlias

Bucket list item to visit here,=.  So glad the boys had fun and I got see all the colorful Dahlias

With all these races, it can be challenging to juggle it all and trust me we are far from hitting our weekly mileage goals. Some weeks we fall very short. Especially as of late. Many of you have met Asher in person or simply have followed along his story for awhile. To quickly let others know who might not, he has a Chromosome Disorder, 13q deletion. Very rare with no long term studies to really help us know what to expect. Asher turns 4 in June but he more closes acts as a typical one year old and is perhaps the size of a two year old. Walking was huge for us and now we hope and pray that one day he will talk. If you have ever met him, you know he's got a tremendous amount of spunk so I'm sure he has the ability. With that spunk and his delayed gross motor system along with other things, Asher also gets very excited and/or stressed. When this happens, he aggressively hits his own head and face. This is huge problem.  It is scary to watch, frustrating because it can be nearly impossible to stop and his punches hurt grown adults so they are hard. For years, I have been pleading with others to please help him and us protect his tiny head and face. Recently, our school district finally agreed to observe him and offer a behavior plan. Win(!), but I don't think they fully understand how severe his head hitting can be.  I'll spare you the photos of some of his bruises. Some are small but he has had huge ones too. The conclusion 'he hits his head for attention'. Such a simplistic answer for a really complicated, complex issue.  Even more, he is getting more aggressive with others, pulling hair, biting.  He doesn't mean to hurt anyone, but it can be easy to not want to take him anywhere for fear of how he will act.   This year thus far I haven't been able to continue my fight for his services as strongly. Another major incident in our life is happening right now and along with many other little things, I just don't feel I have enough mental space to do it all. So in the process, I am feeling defeated and disappointed in myself. I feel I am failing him because he, at this point isn't making progress with as many things. 

When I choose to run during my lunch, I spend half the time, sometimes the whole time, feeling incredibly guilty.  I could be using that time to fight for him more. To push harder. It is said you never regret a run or workout. I'm here to tell you that is not 100% true. So lately I've been trying to run after work hours, thankfully it stays light longer but what comes with that is guilt for not being home to spend more time with my other boys if they don't come with me on my runs.  

Asher alone can be overwhelming. Parenting is a full time job, but having a special needs child is a different type of full time job that unless you love it, I cannot really explain. With just Asher it is easy for life to become overwhelming, yet right now my family is being hit hard with challenges it seems.  At this time and actually for a long time to come we are facing a huge uphill climb with the health of my mother. My mother, who graciously watched Asher 2-3 days a week was diagnosed with stage 4 lymphoma at the beginning of this year.  Since November she hasn't actually been able to watch Asher due to the pain in her shoulder/arm where the lymphoma first started. She is currently undergoing chemotherapy but it is just the beginning of a very, very long process. My older sister has been wonderful, helping to organize her appointments because they are in the day and I can't always take her since children are not allowed in the Cancer Unit. I have been making my way to their house a few times a week to help clean it and to organize their finances. We all have found ways to help them and even though I wish I could go to more appointments, it is proving challenging to find a sitter for the boys for me to take the day to go.  My siblings and I are a team that are helping based on our own strengths.  There comes a point in adult life where you become the "sandwich generation". The period where you are raising your own children but then also needing to care for aging or ailing parents. I am in that period right now and let me tell you there really is no preparation, there isn't a way to schedule your life so when it happens the compounding amount of things that need to be attended to doesn't feel as if they are swallowing you up. 

So although we have running goals and races on the horizon, trying to keep a little bit of our old life alive, all of us are struggling. When we have moments of time that we would have otherwise laced up to train without a thought, we pause and decide to run errands for my parents or I take the older boys to help clean their house or we spend extra time with the boys. The older boys know more about my mom's diagnosis.  Elias just knows she is sick. Asher obviously doesn't understand and we typically cannot take him to see her because he wants to sit in her lap, but she is pain and cannot. He gets frustrated and starts to hit his head. It is a sad situation. There is the struggle to remember to take time to check in with the boys, their emotions and keep a routine for them, but also be there to clean the house or ensure they are both eating or take her to an appointment. 

 Hanging out in Disneyland of course!

Hanging out in Disneyland of course!

Our life right now is full of ups and downs. Our days are full of on-the-spot-decisions, finding what we can get done. Things fall through the cracks. For example I forgot Gabe had promotion pictures for the year book and didn't dress him up. Whoops!  Then there are the bank issues, the car, trying to get Gabe into the high school he thought he was going to but the district said nope 👎🏽 and just the plain, day to day "stuff". Yet, we have to try to always find a way to count our blessings - like being able to take a week vacation with the boys, to the fact that Asher is walking (heck running), that the boys are happy and depend on each other very well, that we get to run at all, that a family friend, Norm has given Gabe a drum set that we would otherwise never be able to even consider, that I know my mom will be OK and that a year from now all this will be a distant memory.  

So for now, enjoy the pictures from our trip.  They don't show our stress or being overwhelmed, they show happiness because our family is truly what makes all these hard obstacles easy to navigate. 

 Family is everything.  It was a great week to kind of forget our stresses and worries.

Family is everything.  It was a great week to kind of forget our stresses and worries.