Friday, December 10, 2010


I lost it today.  It was a subtle loss.  No one noticed, I think.  No one shared in the grieving process with me.  I am only sharing here because I feel it has to be said. 

I think of motherhood as an exquisite experience not for the faint of heart.  Everyday my children are on a journey.  We may only move several inches towards our destination, but at the end of the day, we sleep with our hearts full.  We accomplished the today.  Today, my heart is heavy. 

Matthew has not been sleeping.  He may have his night/day mixed up.  He may want to play in the middle of the night.  His seizures may be wiping him out causing a longer than normal midday nap.  None the less, our sweet boy is not a sleeper. 

This morning was the annual ECI Christmas party.  We have never been able to make it to one of these events due to sickness, doctors, etc.  So, today we went.  My sweet friend was gracious to let us tag along with her, and I was excited about an adult conversation this morning.  Matthew, however, had other plans.

He woke up a bit early.  He seemed to be in a good mood up until it was time to eat.  Then all bets were off.  He screamed.  SCREAMED!  For hours.  We gave him a suppository this morning, hoping that would ease some tummy pain he has been having.  It did the job.  It also resulted in projectile diarrhea all over my pants.  Luckily it was before we left, so I was able to change.  Nothing like smelling like poo in public!

He cried his gut wrenching cry all the way to the party.

Take a vivid journey with me on the party.

I have my two children in a dirty double stroller.  Yep, forgot to wash it before this morning.  My sweet girl apparently did not want to wear her socks.  She threw them somewhere in the car only to be discovered later when returning home.  Matthew refused to do anything but be held.  I sat in the back of the room holding both children, covered in drool and humbled.

I don't accept help well.  I chose this life.  We were blessed with these children.  I don't feel sorry for myself.  Today was no different.  I kept it together through my arm that had gone numb and my pants that were falling down.  I know its too glamorous.  We made it out alive and fully dress, aside from the missing socks. 

My friend and I, being brave or naive, decided to stop at the mall.  Here I am again with my dirty double stroller and my sockless daughter.  We did well for a whole two minutes.  Matthew needed comfort.  He needed to be on his belly.  He needed to be home. 

Here is where I lost it.  He screamed and screamed. Three little old ladies in a store had to come and check on him.  They wanted to make sure he did not need medical attention.  Yep, totally serious.  One young girl asked me if it was normal that he screamed in his sleep.  FYI~he wasn't sleeping.  Because the majority of his vision is in his lower left field, he generally looks as if his eyes are closed in public.  I get the "aww he's sleeping" statement a lot!

I wanted to run out of there.  I did not need pity.  I needed an extra hand.  I needed a gentle encouragement.  Pity does not look good on me.  It clashes with my eyes, and I have made my peace with that. 

But on the way home, I began to feel as sorry for myself as the four mall ladies.  Maybe I was not strong enough to venture out into public.  Maybe I was a sad vision for people to see in public.  I saw the stares while we were eating.  The public doesn't understand Matthew.  They also can not stop staring at Autumn's feet.  Apparently, pity takes over, and they can no longer look me in the eye. 

Matthew screamed all the way home.  He finally fell asleep on the couch, on his belly, in his home.  My head, however, has been racing.  I cannot allow other people's opinions of my children or our life affect us.  Our kid's deserve so much better. 

They deserve a mom who will take them to the annual ECI party without socks and a dirty stroller because she wants them to see Santa. 

So beware:  Do not feel sorry for my special children.  They have so much ability despite their disabilities. 

And I will no longer be attending any pity parties!


  1. If only our special children came with a crystal ball, so that we could know what it causing their distress. Do you/have you tried pain medications? I know with my special child too many years went by with tumultous meltdowns, and it was not until she was prescribed morphine that we saw the decrease of these episodes. And then I felt so guilty that I had not identified the cause of her frequent distress. Sometimes the real reason behind these distressing behaviours is not identified, because the child is already diagnosed with some 'other' condition, and everything is dumped in that basket. We often do not go out now, as my child is happier at home; but is that the right way to go? Sometimes even taking her for a walk results in a meltdown. Luckily she has speech, so can tell us now when she is not feeling well; when she would rather just lay on the trampoline in the fresh air, or stay on her bed, but I feel sometimes I am failing her in not DOING much more with/for her.
    It is not easy to accept help; but I know that I am grateful for the help that I do get, and I pray that you will be able to find a way to get some nursing/home help so that at least there are two of you to do these special things together. God bless.

  2. I get the "Awww he's sleeping" line a lot too, and the staring, and the checking to see if I'm hurting my kid because he won't stop screaming.

    I agree with the no pity parties. Too many times I thought it would be better if we just stayed home. He doesn't care if he doesn't go to the zoo, he wants to stay home. However, it wasn't until I had other "normal" kids around when I started to take him anyway and finally realized he loves the zoo more than they do.

    We don't have the other kids anymore (foster kiddos), and I have resolved to do more outside the home with my son. Even though he might prefer being home, and even though it is VERY difficult sometimes, he deserves to have any experience I can give him.

    Good luck, and I think it's good for other people to see our special kids. Our kids can teach them so much more if only they would pay attention.

  3. is it bad that i chuckled a little?!?!? it seems we had the same eci christmas party experience...well, we seem to have that experience every time i try to take my kids to any type of party.

    hang in there. you are an amazing mom. this isn't an easy job, that's for sure. but after talking to moms in similar boats, it apparently does get better as they get older. however; i still have a vision of my 5 foot self holding kendall in the back of the room with one sock on when she's 8...and if i have to do that....i will :)

  4. I am very proud of my special child. She has proven to many people just how wrong they were. She has overcome so many obstacles. She found her voice and her legs are strong after 20+ years. My special daughter can now voice her opinion to doctors that don't listen, and stand up strong for her kids. She is tough, strong, kind, and caring and is the best mom my grandbabies could have. I am so proud of her and her growth in motherhood. I can't wait to see how much more she accomplishes.

  5. You are the best mother and daughter I and those babies could have. You are independent, strong and doesn't take the answer you are given just because someone says so. You have done more with those babies than anyone could or would do. They have blossomed with you and I have seen how you have blossomed with them. I have seen how you look at them and glow. Never be ashamed, or embarrased about what others may say..I love you and wish I was half the mother that you are.

  6. I related to so many of your statements. It is hard to be walking around with such a beautiful blessing wrapped up in my beautiful and happy daughter, only to be given glances of pity, even frowns.... or the ignorant, "oh she's so tired," statements. I want to shake them and let them know they don't need to feel sorry for me or they need to not assume that a child is sleepy or sleeping because I get so annoyed hearing that over and over. But usually I can vent to friends who understand and take Chloe out and deal with the stares, the ignorance, the pity, the sad faces, etc, etc, and have a perfect day even if my life and my child is imperfect because it brings me joy and other people could never understand until they lived it. And I go out and face all those people so Chloe can have the life she wants and deserves. And you are amazing because you give so much to your kiddos and they are lucky -- as lucky as I know you are. And I'm not sure why I just rambled as much as I did, but I guess you struck a nerve or something! Good luck with Matthew's sleeping. I know how hard that can be, it's a constant battle for us as well. Thinking of you!

  7. This summer I had one of those "aha" moments. We were on a road trip and Sam attracted attention as he usually does. His 15 year old cousin was with us and she asked, "Why do people stare, or have that look?" I told her it happens all the time but it is not until you spend time with Sam that you really notice it. She said "If they only knew Sam...they wouldn't look or talk to him that way". I sat back and I said "Brooke you're right...they just haven't had the opportunity to know him or someone like him." Our lives are forever changed by our children, they have demanded that of us. Other peoples lives may never be touched by a special child and I feel sorry for them.

  8. Some days just don't go right. I have tried so many times over the last twelve plus years to go against my intuition, to satisfy this self doubt that my son can and should take in the outside world. But when your child is not a 'special needs' and not a 'severely disabled child' but rather an extremely or even absolutely disabled child - the game changes and it becomes your life - as I'm certain you know. No one can understand this and the looks are only to be expected imo. If you see a car crash and are not a trained paramedic...
    Best wishes for the new year, I'm glad I've found your blog.