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! :)

Beauty after the storm

We have all seen these words so many times. "you can't appreciate the sunshine unless you go through the rain." Or "you can't have true joy until you know true pain."

Well....I always told myself that I appreciate my blessings and yes, I see the point but I do think you can have sunshine even without storms. Until this past week, then I realized the truest meaning of this phrase.

Usually every evening Seth plays outside. We go up and down our street and play in our driveway.  This routine has become monotonous. Sometimes I feel blah about it, sometimes I take the moments to breath in fresh air and look up at the clouds. It's usually kind of refreshing.  Well the past week we didn't have this time.  Seth would scream most of the day. He was unable to play indoors. He could barely stop crying for 20 minutes before it started again.  He didn't even want to go outside, he didn't want to do anything. Not his favorite things or his routine either. Just scream, just cry.  Such a setback. It was horrible. Watching my sweet child miserable is the hardest thing in the world. Feeling so helpless and overwhelmed makes me miserable as well. 

Well, the other night he calmed down for a little while and then actually agreed to go outside! I tell you, that trip down our street with Seth...fresh air...his smile...I felt like I won the lottery! I was on cloud nine.  I've never been happier to do our "routine." 

Now I get it. I really enjoyed our "sunshine" moment after that storm. I soaked it in, I cherished each step. I was full of complete joy. Just seeing my sweet boy happy and playing, outside....magical. So maybe terrible storms do make you realize the sunshine.

I am always thankful for our good days. I'm always thankful for our health. For our family. I live being thankful. But that joy, that day...was extra joyful. Extra bright sunshine once our storm had passed.

Side lines

As Seth finished up his first year of preK 3 just last week, I still have an image in my mind.  Him standing alone on the playground...watching his friends play.  

Seth has always been one to stand on the side lines. He is extremely cautious.  He doesn't like the unpredictability of others. I remember at his mothers day out program, he wouldn't go near the toy box.  Too much hustle and bustle around there.  His teachers kept a small airplane in a cabinet.  When he would go there two mornings each week, that's what he played with...alone.  For two years.  

The same airplane. I just can help but wonder if Seth thinks to himself why he can't do what the other kids are doing.  Why he can't hop into the fun jump with his cousins or walk through a group of people to go find a toy.  Does he care? Does he see the difference? Or is he content and satisfied being on the sidelines where he feels safe?  

Of course as his parent it hurts to see him standing alone. Watching. Standing. Alone. I wish he could interact more often.  But maybe my heart is the only one feeling this way, maybe Seth is just fine.  Maybe one day I will know how he feels about this.  Maybe it will get better, maybe we will find better tools to help Seth along.  

I just want Seth to know that he is incredible.  Just because he stands alone and doesn't do all that the other children do...that he is amazing. He works so hard everyday.  He works just to do what we all take for granted as simple.  He works to learn what we all learn and comprehend without even trying. Seth is my hero.  I want him to know that even when he's standing alone, he is never alone. I have his back. I'm right there buddy, I love you and I'm proud of you no matter what.

Moments

It has been too long since I've written. I am trying to get back in action. So I'm just going to pick up writing from now. I can't try and backtrack that would just be overwhelming to attempt :)

Yesterday Seth was having a hard time after nap. No child should ever have to experience pain of any kind.  Seth was in pain, pain with no voice, no apparent cause.  He was crawling in his own skin. Unable to stop kicking, screaming and crying.  I picked him up and swaddled him in his blanket and held him as tight as I could. I told him "mommy will rock you until you feel better, mommy is here." Back and forth, back and forth, back and forth..the kicking stopped, the crying ceased and I fell him relax. Back and forth, back and forth, back and forth...I must have rocked him for 20 minutes.  His eyes on the ceiling stimming side to side as if to try and calm himself.   He was in a trance and then he looked at me, right into my eyes and just stared.  Stared with a look of innocence, dependence and gratitude. Almost as if he wanted to say "thank you mommy, I couldn't calm down on my own." it was a tender moment. Continuing to rock he pointed to the door. He was ready to get off the bed and out of the room and try to move forward.  I carried him to the couch where he laid on my chest for another half hour.  He then got up with a smile and went to play with his cars.  It isn't always easy and is often heartbreaking...but I know Seth knows I'm here for him and I love him more than anything...through the rough and tough and tiring, o how I love my innocent little boy.