Butterflies

OK, I am done being angry. It was a guilty pleasure feeling sorry for myself for a few days. Pity parties seem like a good idea at the beginning but they just bring you further down. It's better to pretend to be happy and keep on moving forward. Fake it til you make it. It really works because I am back to feeling peaceful and content. For the most part. You know, during the times I am not thinking about running away or jumping off a very tall building.

I am very under qualified to be a mother of five children. I can do the baby thing. That part is easy. Actually, it's pretty easy for the first 12 years. Plus, they are so darn cute when they are little that even if you are feeling frustrated, it's easy to fall in love with them over and over again. I think people who complain about raising small children are a bunch of ninnies. They need to get over the sleepless nights and potty training. If you cannot figure out how to handle a two year old's temper tantrums, you are a lost cause. It's not rocket science. You are big, they are small. You can just pick them up and put them where ever they need to be. You can take away a toy and they will think you are the all powerful goddess and they will respect you. They think you know everything. Most of the time, they just want to play with you and what is better than that? And the problems they have, you can usually fix. If they get hurt, they run to you and often just a hug from you makes everything right in their world again.

Just wait until they turn into teenagers. It is not so easy. You can no longer pick them up and put them where they need to be. Well, you can try, but you'll throw your back out. They aren't quite as cute any more and in fact, they smell like too much perfume and they hog the bathroom. They break my heart constantly. The things they struggle through are tough to watch. And I really do know the answers to help them but they think I am retarded, so they won't listen half the time. And the thought of them actually running to me for a hug to make everything better makes me laugh out loud. They are embarrassed to even be seen with me. Most of the time, it is best to let go and let them figure out things by themselves any way, but it is hard for me to do.

Our teenagers are 14 and 16. I remember being those ages. My life was very hard from the ages of 14 to 22. I sure did do a lot of struggling and I got really hurt so my urge to protect is magnified. I'll tell you a little secret: I thought that I would be such a good mother that my children would not have to go through the same types of challenges I went through. But you know what? It doesn't matter what kind of parent you are. All people have to go through puberty and I am coming to realize it is divinely designed to be a struggle. At least that is what I am telling myself. I cannot admit it could all be my fault. I have to hold on to some faith that the challenges have a purpose or else I might have to throw in the towel and find that very tall building.

Teenagers are like butterflies. They start out as an egg, then larva in a nice nest way up high in a tree away from danger, next they develop into pupa, and finally they become caterpillars and venture out of the nest and the tree. When they are ready to transform into butterflies, they eat a lot, get really fat and they sleep in a chrysalis for a long time. Sounds like a teenager to me. And then, right as they are ready to emerge, they really struggle. When people see the new butterflies with wet wings having a hard time, sometimes we try to help. But if we intervene, it actually kills the butterfly.

In order for the butterfly to get her new circulatory system up and running, the butterfly has to take her time getting out of the chrysalis. It takes while. She has to pump her wings while hanging on to the chrysalis until she is ready to fly. If we pry her shell away to quickly to help her out, she will fall and die. If we try to take her away from her perch too soon, she will perish. She has to do everything by herself. And we just have to watch.

So I guess as parents, maybe we are the chrysalis. We have to just be steady and let our butterflies have something to cling to and we have to let them pump their pretty little wings until they are strong enough to fly on their own. If things go well, the butterflies will fly away into the sunshine, taste different flowers, find a mate, make lots of caterpillars who will go through the same struggle as we all did. But maybe we are just new butterflies too, just winging it with our own struggles.

A couple of weeks ago, I was standing in line at the post office and I overheard two ladies talking about their grown children. They were both mailing their daughters Valentine's packages and it was a small world kind of thing and each of the ladies shared their sorrows when they discovered they both were mailing packages to each of their daughters living in different states who were each going through a divorce. Both ladies found comfort in each other as they related just how difficult is was to experience their daughters' heart breaks.

One of the ladies said, "Gosh, you get them all grown up which is hard enough and then you think you have finally made it and then you realize it's even harder when they are all grown up and go through things you cannot fix or help at all.

I butted in, "Um, excuse me. Don't mean to be nosey, but did you just say it gets harder when they are grown?"

The other woman laughed and said, "Oh, yes! You have no idea!"

And I said, "Man, I thought I was in the midst of the toughest stage with two teenage girls and three younger children."

And the lady said, "Well, you are busy and juggling a lot, but raising teenagers is nothing like the heartbreaks and worry you will suffer through when they are all grown up. You never stop being a mom."

There is evidently no break from being a mother. Once you bring your child into your life, they are yours forever. I can see this with my own mother. She's still my mommy. I still rely on her quite a bit even though I act like I don't need her. I am sure her heart breaks for me when I am struggling. Maybe we never really grow up all the way. Maybe I am still struggling out of my chrysalis with wet wings all the while trying to keep up with three caterpillars and two butterflies just peaking out of their shells. Maybe we don't fly away until we are ready to fly off to the next life. It is folklore in many cultures that butterflies are the souls of those going to the Otherworld.

The larva stage can last an entire year depending on the weather. Caterpillars spend a long time foraging but as butterflies, we don't actually get to fly for very long. Only a couple of weeks, typically. Most of our lives will be all about the struggle.

So, here's my epiphany: Keep the eggs safe and protected. Make sure the larva are developing properly. Enjoy the caterpillars as they are lots of fun. Teach them what they need to know to survive. And let the metamorphosing teenagers sleep and eat all they want. Make sure their chrysalises are good and strong. And when they start to peep out of the shell, let them be. Give them the chance to pump their own wings as we parents continue stretching our own.

Autism Journey part 7

I cried 6 times yesterday and I am not even premenstrual. Nicholas went to his five year old check up and for some weird reason I had convinced myself that this check up was going to give me the answer I have been searching for during the past 3 years. I desperately want a doctor to tell me WHY Nicholas has PDD-NOS and why he is so little. In my heart, I have been believing that one day a doctor will tell us why and how it happened and that there is a way to fix it.

Our pediatrician is quite remarkable and she acts out of kindness and love. She has been willing to explore any hair brained idea I ever have. She doesn't scold me for googling medical stuff too much. She has a heart and understands what it must feel like to be in my shoes. She never judges me. Honestly, I don't know how she even puts up with me.

But yesterday, a HUGE shift took place in my heart. Nobody could see it unless they saw my hands shaking or saw my tears spill out in the parking lot. It wasn't a bad thing. It was just me coming to the end of my desperate search for answers and standing at a complete dead end.

Nicholas was diagnosed with PDD-NOS when he was three but he was already receiving speech therapy when he was two years old because he had stopped saying mama and dada and he only grunted. Teachers saw red flags for autism and it freaked me out even though I saw them too.

It only took a developmental pediatrician one hour to make his diagnosis. I didn't know what PDD-NOS meant but he said the word autism and my heart sank to my feet and the world spun out from under me for an entire year. I just worried that Nicholas might not ever be verbal. I worried he would never be OK.

I was under the false impression that autistic people never love others and that they are unable to show affection. It broke my heart.

Of course, if you know Nicholas, you know that he is one small package of hugs and smiles. He is cuddly and extremely happy. He hugs me every day and at night when I put him to bed, he holds my face in his hands and stares into my eyes for a long time. He giggles and smiles. We don't carry on conversations like I used to experience with my older children when they were five years old, but we communicate just fine. And I think we even communicate telepathicly sometimes.

But I just wanted for so long to know WHY this happened. What did I do or not do when I was pregnant? Was it the vaccine? Every month conflicting stories are published in medical journals about the link between autism and vaccines. Who is telling the truth? Was Nicholas born with it? Was he destined to have PDD- NOS? Is it inherited from me? He's not the only child in our family affected by Autism Spectrum Disorder. Was it the high fever he had when he was one years old after a bad reaction to a round of vaccines? Did it cause brain damage? 'Cause let me tell you, he was never the same baby after that episode.

Well, I was eager to brain storm ten different possibilities to explore with our friend and pediatrician when it all shifted in my heart. She said we don't have to know why and we may never know why. And that's OK. I don't think there's anything we can do to "fix it." He's a beautiful child with a beautiful mind. Let's just focus all our energy on his abilities and get him all the help we can.

Whoooooosssssshhhhhh..... the wind was sucked out of me. The hope for a cure, gone. Even though my hope was based on a wish and not actual faith, the hope died right there in the office. And for the first time ever regarding Nicholas, I tasted acceptance.

Boy, it tastes bitter at first. It's like giving up. It's like hopelessness. It is like defeat. But I know it's really not. It's just going to take me some time to figure it all out in my heart. And the taste is still bitter.

After Nicholas' appointment, I took him to his school which is the state of the art, best place for special needs children in the entire state and possibly beyond. I enjoyed a Valentine's party in his classroom. I sat next to a precious child who will never walk or talk. He was beautiful. And I thought about what his mother must carry in her heart and how heavy it must be with worry about the future.

And then I looked at Nicholas, who by all accounts is fine. He's healthy. He's happy. He's learning new things every day. He loves his life. And when I looked at his friend sitting in a special chair, he looked like he was enjoying life too. He was mouthing a Cheeto and appeared to be in hog heaven. I looked around at the other children. One little girl is blind and she was having a ball dancing to some music and singing the words. She is happy. And a pretty little girl reached over and started holding hands with a little boy in a wheel chair and she danced with him and petted his hair. My goodness, the entire classroom was filled with happy children and you honestly could not tell who had a disability and who did not. It was just a classroom filled with children.

On my way home, I called my sister. I cried to her and told her I didn't mean to be ungrateful, but I just am so sad and so mad that I can't find a cure for Nicholas. I feel like he got locked up and damaged and is not the person God intended him to be. She wondered if I'd ever really allowed myself to be angry about it before. I haven't. She said, "Then be angry. Pick up that hat, wear it for a little while and then put it down. You don't have to marry your feelings. When you want to feel positive and happy, you can later. If you want to be mad, be mad."

Ohhhh... relief. I am f'ing PISSED OFF that something bad happened to my baby and I cannot fix it!!!!

There, I said it. And I mean it. Even though I love Nicholas just the way he is and he is a blessing to this family, I MEAN IT!!!!! I AM ANGRY!

I came home and jumped into Adrian's arms. I told him how sad and mad I am. And he hugged me and said that was OK but that he wasn't mad at all. And that he knows in his heart it is all meant to be.

He was raised in the Mormom church and he believes in a pre exsistance. He said that when it was time for Nicholas to come to earth, that Heavenly Father told him that Abigail and Adrian needed him in order to bring our family certain blessings and to teach us lessons that only he could. And there were going to be four siblings who needed what only he could give. But that it wasn't going to be easy. That a life experience on earth is tough. And there would be some added challenges like living in a body affected by autism. And he would be really little for his age. Kids might make fun of him and learning certain things would be hard.

And that Nicholas' spirit understood all of this and more. Five and a half years ago, Nicholas' spirit stood up, raised his hand and said, "I will go! I am ready for this mission!" And then, while I was laying in bed reading a book, Nicholas' spirit joined the baby body I was carrying in my womb and I felt him kick for the first time. His spirit had quickened. Nicholas is totally OK with the hand he has been given. We need to be OK with it too. It is part of the plan.

Well, now you can see why I cried so many times yesterday. What Adrian said is so beautiful. I told him he needs to teach the world that message. That we are all here by choice. If we believe we knew of all the struggles and heartbreaks we will face, it makes it easier to find peace with it all. It's easier to see the precious people in this world who live with awful disadvantages, that it is part of a plan and this is just one tiny slice of our experiences.

I'd like to think everyone who is born with a disease, cancer, C.P., Downs Syndrome, Autism, Mental Retardation, Neuro tubal defects, or whatever, that those people are serving very special missions here. And that one day, when their time is up on earth, that they will be restored to their perfect bodies and minds. And that they have blessed the lives and taught all us typcial folks lessons on God's pure and unconditional love.

I'll put my angry hat away when I am ready. And then, I will get on my knees and thank God for chosing me to receive so many wonderful blessings from each of my five special children.