Starting to make sense

Well....life got crazy and my blog got left behind. But I'm back...for right now at least ;)
    I feel that life has gotten even harder these past several months...but the pieces are starting to come together. Seth is in the process of getting diagnosed with mitochondrial disease.  Devasting.  This is not what we ever expected in life. At all. But it is making more sense as to what Seth has been dealing with the past few years.  Around age 3 he started having fatigue, leg pain and muscle weakness.  His naps were longer and he didn't have the stamina he once did. He had just learned how to really run. He loved to have races. His legs began buckling under him when he tried to run. He told me his legs were "tired."  At age 4,  He started preK at 4 days per week for 21/2 hours per day.  Just to put his fatigue into perspective, this year, age 6, we are hoping to make it to school 2 days a week for an hour.  His progression has led to new symptoms as well.  His latest OT eval has him "below age 4" in his skills. His learning is delayed. His weakness is making it hard for him to hold himself up when sitting. He has severe heat intolerance and can't be outside at all in the heat. He has extreme fatigue and sleeps for 14 hours or more each day.  His muscles are getting weaker and he's having respiratory issues.  My boy used to ride around our neighbor hood on his bike.  Now I push him in a stroller.  There is nothing more heartbreaking than watching your baby decline.  Now we know why Seth never wants to leave the house, what we once thought was anxiety..we now know is fatigue.  We thought he had transition issues when arriving home from outtings, but it was exhaustion. Him not wanting to go outside to play...wasn't anxiety..now we know it's heat intolerance.  Seth resists anything that will take the very little energy he has.  Getting him to his therapy sessions is so hard.  We have also decreased the time and activity level of therapy as well.  We are learning and researching more everyday about how this diseases affects our Seth.  It's a learning curve, like when we first learned of his sensory issues and autism. he has many other issues facing him but this covers the just of it.  We have a lot of learning and processing to do with this on our plate.  I literally give everything to my Seth and making sure he has all he needs in life.  He is my life. He has made me who I am today. He continues to amaze me with his heart for Jesus, his sweet soul and his strength.  Just yesterday we went to the grocery store with his new stroller....he told me "my legs didn't get tired at the store, I love my stroller." I'm so glad he can tell me things like this...I know we are doing what it right for him.   The biggest thing is conserving his energy, letting him rest and keeping him healthy.  This new road is scary but I know God will lead us where we need to be and show us how to care for our extra special boy.

There are good people all around

When so much of your day is a struggle, a little kindness goes a long way.  Seth struggles with many things and sometimes the days can be unbearable for the both of us.

Recently we have seen kindness and love, even in strangers.  Seth had to do bloodwork which is known to cause violent panic attacks.  Physically we can barely handle it.  So I called the lab the day before with a crazy question...sure the answer would be no. "could we draw the blood from the car..?" He will be strapped into the car seat which will help with the physical battle.  Also remaining in the car will help with anxiety and transition. She said yes!!! Very nicely too!! She was amazing and it helped Seth so much! She could've done what was easier for her but she didn't. She had compassion and kindness and she made our day that much better!  

Even when someone allows us to go before them in a check out line.  We only go to very small stores with Seth and only on the perfect day.  That gives him the best opportunity to be successful.  Any kindness on an outting goes a long way.

We struggle with transiitons, anxiety, fatigue, pain and even criticism from our own family.  But when a friend understands or a stranger reaches out...You realize that there is good,  that there are good poeple out there and there are blessings all around.  Even if it's just a text that says "I understand, praying for yall." Kindess can go a long way.  Kindness,  no matter how small can change the way someone's day is going. It can truly touch someones heart in the best way.  I always try to be kind, you never know what someone is dealing with in their life.  Kindess can be someone's miracle to keep on going...to not give up...to not lose their smile.

Impressed

Seth impressed me today.  He is continuing to learn how to cope and know his own needs. Such an amazing thing! It's slow,  but when he displays this it is just awesome.

He loves to print pictures out on the computer.  He thinks of his favorite things, usually different vehicles, his wall in his  room is full of these pictures.  His recent obsession is trailers. Trucks pulling trailers. Specifically.."trailers with two wheels and a stand up thing." Seth tells me that quote a million times a day. So he wanted to print a "trailer with two wheels and stand up thing with golf cart on it.". Moving on with my point....haha,

We had a doctors appointment today and he asked to bring his golf cart picture. Of course we did. He held onto it throughout the appointment.  He studied it, talked about it and found comfort in it.   He began to get anxious so he hid in my arm and stared into his picture.  He found comfort in it, almost as if he knew he needed to bring it to the doctor that day.  When he started to fuss I would look at it with him and we would talk about parts of the trailer and golf cart.  That little picture helped him on a level I would have never known.  Seth knew, I really think he did.  He helped himself today.  After watching him struggle with almost everything on a daily basis, this was amazing.  I hope and 

pray he continues to find ways to help himself, cope with difficulties and try his best to stay calm in stressful situations.  I'm so proud of my little man and...he's still carrying around his picture :)

Little bit lonely

I have to say, it's a bit of a relief when people don't constantly expect us to do things or go places.  I always had guilt for always saying no.  Now, we don't get the invites. As much as its a relief, it feels lonely.  Honestly, we couldn't go anyway, but sometimes simple words would go a long way. "wish you could come, but I inderstand.." "Miss you, hope to see you soon." I am beginning to feel forgotten about.  We are isolated to the point where somedays we cant even go outside much less leave the house.  Having poeple over or going to  visit others is a near impossibility at this point.  It's hard, it's lonely.  It's hard to see everyone doing fun things with their children while I sit indoors dodging meltdowns.  It could be worse, I know families are living in hospitals with critically ill children.  I count my blessings several times a day to keep my heart and my head in the right place. I am blessed! But I don't discount my feelings either.  Sometimes a few nice words can go a long way in someone elses heart. It can be lonely and it's nice to know others haven't forgotten us and still care.

It just hurts

It never gets easier to watch your child struggle. Watch them hurt. Watch them be left out. It hurts even more when they realize they are left out.
      Seth is learning his limits. Which is a great thing because he spares himself of meltdowns and days or aggravation from over stimulation.  Seth had a field trip to the fire station today. His school is a small home school so he went from our house to the fire station with me. Great for transitions and such. His teacher is great. She talked about this field trip for two weeks. I did the same. Seth loves fire trucks and has been excited to see them with his friends.
     This morning he did not want to go. He just didn't. This usually means he's anxious or knows he can't handle it. I always encourage him to try, even if we don't get out of the car...just try. Give it our best shot.  He did. Got in the car and we arrived to see all of his friends happily going into the fire station to see all the cool things.  Seth cried. Tears rolling down "I don't wanna go." I know Seth. His heart wants to, he wants to be with his friends getting to see firefrucks. He sees them doing it and wants to. But his mind and his body won't let. His anxiety and sensory system hold him back. I give him several minutes. He cries and says angrily "I want to. No I don't want to." an internal battle so familiar. Must hurt him to be held back by himself. Hurts me as his mommy that I can't fix it. I can't take it away, I can't take him in to enjoy a great time. Hurts a whole lot.
    I stay positive for Seth. "it's ok buddy, maybe next time. Let's go do something fun together now." His tears roll for a while. We end up buying a happy face pillow at the nearby dollar general. (Seth loves retail therapy) This pillow with a giant smile gave us both a smile. He then asked for fast food. Why not? Comfort food it is.  It hurts but it is what it is and we will carry on. Find our own comfort and happy. Maybe next year, maybe next time...Seth won't be left out. This happens a lot and will happen again I'm sure. I will always be here to try and make it better for the love of my life, my Seth.

Accepting and finding peace...

Well, it may have taken five years but I feel like I'm getting better with acceptance everyday.  I've learned so much about how to help Seth.  About what comforts him, sets him off and how to tailor to his needs.  Life isn't easy, simple things prove to be complex.  Yet with accepting this and finding joy in each day...it actually makes life easier.  Stressing about what I can't change makes life hard.  Wishing it were different or easier only sets us back.  Learning to stress less and go with the flow more has made everyone more peaceful, even Seth is more relaxed.   We are finally truley accepting that our life is different.  Different challenges but also different beauty! I've learned somedays all Seth can handle is sitting home with me making lines of cars.  Instead of getting frustrated and trying to make him do something else...I sit with my sweet boy.  We build lines, we snuggle, we relax, we regroup.  Not fighting our reality has been a blessing.  Our home is more peaceful.  Seth is learning everyone is different and that's a good thing.  He even thanked God in his prayers the other night for making everything beautiful and different....melted my heart. I still have tough days where acceptance is hard but I've come so far.  I'm so thankful Seth has shown me the value in difference, the beauty in perspective and the peace of acceptance! I am eternally grateful for the gifts my boy has blessed me with....just by being him! 

Guilt

Do we apologize for things we have no control over? Do we say "sorry" when things are not our fault? I have so much guilt over things that are totally out of my hands.  I feel as if I miss out on so much. I feel very isolated and I am often absent when my friends and family need me or want me around. 

I have a giving heart. I enjoy being there for people. I used to enjoy volunteer work. I always hoped I could help my sisters care for their children.  That I could be people's "go-to" in a time of need. But I am usually unable.  I can hardly even make it to family functions or casual time with friends.  None of the isolation is by choice. It is what it is. Seth's needs right now out weigh anything else. It is extremely hard to break routine to be there for others.  The guilt comes in because my heart wants to be.  I want to be there. Yet I am unable. It's so tough.  I always want to say I'm sorry. I'm sorry I can't come to your birthday dinner.  I'm sorry I can't watch your child for that appointment you need to go to.  I'm sorry I didn't make it to help you move.  I'm sorry, I'm sorry, and I'm still sorry.

I know it isn't anyone's fault and maybe the guilt I feel is abnormal.  But I think anyone would feel this way.  We are social by nature and naturally want to be there for each other. So, although I tend to my family's needs And I am thankful I am able to be there for my son...It's still tough. I know I am doing the absolute best I can but I am still sorry I can't be there for other people too.  I try to stay positive and hope one day it will get a little better. Until then I will keep wishing I can do more but keep loving my little man and being his #1 supporter and #1 advocate. He has my heart and is the most important part of my life and that I will never apologize for! :)