Friday, October 18, 2013

Live and Learn

 What I've learned in the last four years of parenting my child with special needs. I want to thank my daughter, Sophia, for teaching me all that she has in these years and for helping me to become a person today than I was yesterday and different from the person I was 4 years ago.

 - YOU WILL MAKE MISTAKES! Yes, I said it and it's true. You will make mistakes along this journey and it's ok. The good thing is that one day you'll look back at those silly mistakes and laugh. You'll know it wasn't intentional and you'll know it was ok. When Sophia first came home from the hospital after receiving her g-tube; her first feeding was a big, UH-OH! It was my first tube feeding and I fed her 4 ounces in 5 seconds flat. She immediately threw up all over me. She was crying. I was crying and in that moment I thought I was the worst mother in the world.

 - YOU ARE NOT THE WORST MOTHER/FATHER IN THE WORLD! No matter how big your uh-oh is, know you made it by trying to do the best thing for your child. The worst parent in the world wouldn't try much less care when things don't go as planned.

 - YOU ARE DOING ALL YOU CAN DO FOR YOUR CHILD! So many times I've researched the internet and sought out different therapies, foods, toys, medicines, etc. All because I was looking for that one thing I didn't know about. What if there is something I'm missing. What if I'm not being everything she deserves? The truth is, I am. The truth is, you are. We all are doing our very best in this very moment and that is all we can do. Be proud of that!

- SANITARY IS CLEAN! So your house has toys sprawled about. There are dishes in the sink, clothes folded neatly on the couch, beds unmade, floors that need scrubbing, dusting that needs done. The point is, you are a parent. You have a child with special needs and that in itself takes up the majority of your time. I wouldn't necessarily eat off my floors but my house is sanitary. No one expects your house to be spotless and if they do kindly invite them over to clean it themselves.

- TAKE CARE OF YOU! It can be hard to remember yourself in the daily activities of juggling life with a special needs child but it's important to remember yourself. Do something for yourself every now and then even if that something is sitting on your back porch with a cup of coffee. No matter how big or small your something is, do it!

- PEOPLE WILL STARE! Most don't do it out of ignorance, although there are a few that do, in general people are simply curious. Take my case for example. Sophia has very obvious physical features that many people have never seen. I'm sure at first glance their minds instantly think, "Did I just see what I think I saw?" So they begin to look with questioning eyes. It's ok. Take that opportunity to spread awareness and educate others on your child and their condition. No matter what your child has, spreading awareness is key to ending discrimination.

- GET INVOLVED! Get involved with other parents and families with special needs children. It will make a huge difference and help you cope in times of need. We NEED one another. We NEED the bond with others who understand our struggles and know what to say when we need it said. We NEED that strong network of parents who have walked our in our shoes before us and those who have just started down the path.

- FORGIVE THEM! You know exactly who I'm referring to. Those people who say silly things such as, "God only gives us what we can handle." While in that moment you probably want to scream "So then tell me just why God thinks my child should handle this and not yours?!" The best thing we can do is know their intentions are good and forgive them. Most people don't know what to say to us. They don't know how to tell us, "I'm so sorry you and your child are having to deal with this. If there is anything I can do to help please just let me know." Then again, there are times when you don't even want to hear another person say, "I'm sorry." Truth is, there are times no matter what people say to us, it's the wrong thing to say.

- LISTEN TO YOUR INSTINCTS! While doctors are trained in medicine and have the very best intentions at heart a parents instinct is unmatched. You know your child better than any one else on earth. Do what you know needs to be done.

- NEVER GIVE UP! If I had a penny for all the things I was told Sophia would never do I'd be rich by now. Don't listen to all the things these so called specialist say your child wont do. Always, always, always, hold on to hope because there are days when that hope is all that gets us through.

Parenting is never easy no matter what your life circumstances are. Bask in the thought that you are never alone. Some have it easier, some have it much harder, but this is your life and you have to make the best of it. Show off your child with special needs just as you would any other child. Know that the rest of the world smiles when you share their accomplishments no matter how big or small. Humanity is not so bad after all.

Thursday, February 28, 2013

Accept the things we cannot change but change the things we can!

When we first found out during my pregnancy that Sophia would be born "different" I was devastated. I was broken and depressed and at the saddest point I had been in my entire life. Then shortly after finding out about her differences the news came that she might not even live to make her due date. Suddenly, the fact that she was different seemed so small. The thought of facing this world without my child that was growing inside me wasn't something I ever thought possible. This child, my child, my daughter, was kicking and yet this doctor is telling me she might not live. The same child we saw sucking her toes during our fetal echocardiogram. The same child that looked just like her older brother during our 4D ultrasound before our fetal MRI. The same little girl that we saw peeing and her hair waving around during our amniocentesis. Suddenly all the problems and things I had faced before seemed so petty and the world around me continued to move on as I stood in my own nightmare. Yet, the mother in me found her strength and knew that I had to fight. Together we would take on this world and concur what we could but accept the rest. I can handle her being different, that's no biggie but not having her was not something I was willing to accept. "Think about the quality of life she will have" they said. "You can abort out of state" they whispered.

Quality of life..... To me this doesn't simply mean the physical and medical ailments my daughter might have. Yes she is different and I cannot change the fact that her arms aren't like yours and mine but what I can change is her quality of life. I want my daughter to be happy, end of story. I want her to experience the beach during summer time and long cuddles in front of the fireplace during the winter. I want her to experience building sheet tents in the living room and having dessert before dinner. Attending birthday parties and playing in the park. I promise to turn the music up loud in the car while I sing loudly and dance my heart out in hopes that she will follow suit. She might not turn into the teenage girl that ravishes through my closet but I promise to keep her closet full of the latest fashions. When she's old enough I will take her to have her 3 fingers manicured and her tiny toes polished. I will talk to her despite knowing she will not talk back because one day I hope that she will. I promise to buy her as many shoes as possible in hopes that one day those shoes will start walking. One of the best medicines we can give ourselves as special needs parents is to accept those things we cannot change but to change the things we can!!!

Wednesday, January 30, 2013

Getting out of the funk...

It's been so long since my last blog but I'm in such a funk these days I need to put my thought down before this world of mine literally implodes. So here goes.

My every emotion is dependent on my special needs child. When she's thriving and moving forward my mood is a direct reflection of that. Then on the other hand when she's had any amount of regression or set back my mood falls right in line. It's more than an emotional roller coaster that I'm on. Not only do I deal with the daily stresses of raising a child that is so different from our surrounding world but I also have the stresses of every day life. I'm raising two other children and try my best to ensure they have as normal of a life as possible.

Have you ever had a moment in time that changed everything going forward? Your entire world from that moment on was and is never the same and yet somehow you search through all the craziness trying to find one ounce of normalcy. That moment came for me the day I found out my child would be born with special  needs. I remember who was with me, where I was, the set up of the room, the lighting, everything in such vivid detail. Despite knowing there is no way to prepare yourself for all that is to come. How can you prepare yourself for heartache and love beyond anything you've ever known? You tell family and friends and after a pep talk and a few tears they've moved on with their lives and you are still there. Still trying to find some meaning and constantly looking for direction. Then every now and then those family members and friends come back around to tell you how great you're doing and how they don't understand how you do what you do. Well here's the secret from us special needs moms, WE DON'T EITHER!" We simply do what we have to do for our child. Do we have our days when we want to just give up? HELL YES! Do we have days when we feel completely defeated? HELL YES! Do we have moments when we just need to sit down and have a good cry? HELL YES! But then, then there are moments when our special  needs child has accomplished something that we were told they never would accomplish. Or a simple moment when that child looks up at you with a smile and despite being labeled "non-verbal" that smile says, "Thank you mommy, I love you too." That is when our spirit and our strength is renewed. We put back on our super momma cape and go back at it again.

Don't forget that we know our lives are so much different than yours. We know our child might not do certain things. The idea that my daughter will never have a wedding. I'll never be able to watch her have her own child. I will never see my daughter drive away to college or pile into a limo with her friends for prom. Those things never go away. But as a person in my life there are times when I simply need you to just be with me. We special needs parents don't want nor need your pity. We just ask for understanding. Understand that we know and understand that our lives are hard and different. Lend a helping hand when you can to help our lives be as normal as possible. See our child through our eyes and see past the syndrome. See them for the person they are and love them for that. Not because they have special needs. Understand that my absence is not my way of saying we are no longer friends. It's a sign that my life is absolutely crazy and this is probably the time I need you the most. When you brag about your typical child's progress understand my silence is not out of lack of joy for you. I am happy for you and your child. My silence means I'm sad that my child is still so far behind. That does not mean I want you to stop telling me about the milestones your child has met. Some days you will not be greeted with silence but understand some days for me are better than others.