Tuesday, June 25, 2013

My Letter to the Pre-Special Needs Mommy Me

A good friend of mine posted this video for parents of special needs kids on my facebook wall recently.  As I watched it, I was struck by a couple of things.  First was the man at 1:14.  His image and sign only flashes on the screen for a second or two, but it's very impactful.  It says, "Praying to the same God/Savior who put you in this position is kind of futile...no?".  This simple phrase pierced me to the soul because I see it just the opposite and I can feel that man's hurt in just that one sentence. It's like he's saying he feels abandoned by God while trying to endure the hardest trial life has ever dealt him.  If one can't find peace and solace and hope in God, any God, imagine that person's sense of helplessness.  For me, it's just the opposite.  I find my strength to go forward, my hope for the future, my understanding that my reward comes later.  I find these things in my faith.  I'm blessed to have been raised in a faith that has taught me that I am a literal daughter of Heavenly Father and that He knows me better than anyone else in the world does.  He blesses us with trials he knows we can overcome if we let Him help us.  How lost I would feel without religion in my life.  It gives all of these struggles a purpose.   My heart breaks for the man holding that sign because I can just hear the despair, feelings of being lost, anger, hurt, and so much more in those words.  And that makes me sad for him.

The second thing I thought about is what I would tell my pre-special needs Mommy self if I could.  It's weighed on my mind for a day or so now, so I figured I'd write myself a letter. 

Dear New Mom Aimee:

I see you sitting there holding CJ at about seven weeks old.  I can hear the thoughts in your mind as they whirl around. I can hear the frustrations, the fear, the worry in your mind. I know you blame yourself for passing on this gene to him.  I can fast forward a few years and recognize these same thoughts and fears spinning through your mind as you start the whole scary process over again with Liam.  I know things that will happen that you can never imagine.  There are so many things I want to tell you, not that you'll ever understand them until after the fact, but they are important words nonetheless, and they need to be uttered.

First and foremost, you WILL survive this.  In fact, your whole family will survive.  You will learn to help your boys help themselves. You have all the tools in you to lead your husband and your other children in the right direction.  The thing is that you don't know the tools are in you. You MUST ask for help.  Beg for help even.  I know asking for help is like having your toenails removed and far worse than any other fate you can imagine.  That's something about you that won't change, but the only way to learn to find the tools within you and how to use them is to allow help.  Allow help from specialists and teachers who can teach you how to teach your children. Allow help from friends who are desperate to do something, anything. Allow help from your husband. Don't push him away and insist that you can do it all yourself. It will leave you exhausted and him feeling like less of a man.  Allow people who love you to be shoulders to cry on, to bring meals, to joke with you when you just can't do it anymore. 

Allow God in.  I know you are so angry with him right now.  I know you won't admit to your anger for a long time because you feel so guilty being angry at God, but He knows. And He understands. And He cries with you at night when you don't think anyone else hears you.  He knows why you're mad and He hates to see you, His child, hurting.  He has his hand out to you every single day. Each day that you push Him away and insist on fighting this battle alone, He sends you angels and tender mercies.  You may not see it right now, but you will.  Eventually you will come to see things differently. You will understand that it's not so much that He has given you this trial in your life as it is that He has given these boys you. He gave your sons deafness, extreme ADHD, health problems no one else can understand, and struggles that are just "not fair".  But, to help them with these hardships, He gave them YOU. You are their tool, their strength, their tender mercy, and their angel.  It will take you time to understand this, but once you do, you will rise to the occasion.

You will cry over these children.  You don't like to show emotion, so you won't cry much in the beginning. You'll be too busy searching for answers and resources, but the moments will come that you will cry.  When you see other kids not wanting to play with them, it will cut you like a knife.  When you watch them work ten times as hard as everyone else to accomplish the same task, you will ache for them.  I'm not going to lie. It's going to hurt. A lot.  You will occasionally ask someone to be brutally honest about things, and they will. Then you'll regret having asked. 

You will rejoice over these children.  Remember the day one of the specialists told you CJ would never speak understandably and would probably only read at about a fourth grade level by the time he graduates?  She was wrong.  She was so very wrong. You will find every resource imaginable for him and for Liam and they will speak.  In fact, CJ will speak so clearly that he gets kicked out of speech classes.  And reading? It will be all he wants to do all day long. Non-fiction will be his favorite and he will crave books and more books, especially encyclopedias, almanacs, world record books, and Ripley's books.  He will sit around the table and regale you with all the useless facts he learns.  Be sure to ask him about the salivary properties of leeches. Fascinating!  Oh! And have plenty of art supplies in the house.  He loves art.  He emotes through art and takes great pride in creating beauty. 

Liam will have the most struggles in his early childhood. Between his mystery lung disease and ADHD and hearing loss and all the crazy medical things that happen, he will struggle. He will be the greatest test of your patience. You will exhaust yourself cleaning his walls, you will go broke replacing all the things he dumps or destroys, you will grow weary of all the late nights with him, you will beat yourself up over your choices when people who just don't "get it" question you.  Remind yourself often that those feelings of frustration and exhaustion are valid and fair.  You don't have to be perfect all the time.  Also, be sure you savor the amazing moments. He will have a sense of humor like no one you've ever met and he will relish every new thing he encounters.  He has so much excitement about life in his pinky finger let alone his whole body. 

Quit caring what others think or say.  Let them wear their favorite super hero costume to school. Let them carry all twenty of those books everywhere they go.  People will occasionally be insensitive and say stupid things. Remember that they don't get to live your life day to day. They don't have the opportunity to see how far these kids have come.  You won't realize it right away, maybe not ever even, but people will stand back and be a little bit in awe of what you accomplish. They will be drawn to your boys and they will look to you to be an example. You will, of course, fail at being a good example a lot of the time.  But, sometimes you will have moments of brilliance.  Embrace those moments. 

Keep learning. Keep asking questions.  Lots of questions. Keep opening your mouth and sharing what you know. You will feel really stupid in the beginning. (Not that I have to tell you this. You already know.)  Little by little, your knowledge and understanding will grow. This isn't just for your benefit. The Lord will bless you with this understanding for you to share it. 

Forgive yourself. So, you're the one that carried the gene that caused their deafness. Who cares?  It's not something you can control. Really, if you'd known they'd be deaf, would you have opted not to create them?  We both know the answer to that.  It will take you many, many years to get over this guilt.  In fact, even as I write this, I still cringe every time a well-meaning person asks about how they lost their hearing or a doctor suggests genetic testing.  It's a deeply-buried guilt, but it's there and it will rear its head now and then.  At some point, I hope you allow yourself to move past it. 

You will embrace this. Quickly. As you sit there holding those new baby boys just learning of their disabilities, you are completely overwhelmed by it all, but that won't last long. You will find a love within you that you had no idea was there. You will be a passionate voice for everyone with special needs. You will be a good mom.  Despite your fears, you WILL be a good mom. 

It's okay to get frustrated. It's okay to sit down and just cry now and then. It's okay to feel defeated. It's okay to admit you're human. You'd like to think you're SuperMom, but that doesn't make you any less human. 

I guess that's it. Ask me again to write this letter in five, ten, twenty years, and I imagine it will be much deeper and quite a bit longer.  I'm also pretty sure it will contain more joy and love than anything I can imagine even right now.  As I sit here watching all six children around me happily playing and just enjoying life and comfortable with who they are, I'm quite positive joy would be a part of any future letter I'd write to my former self. 



  1. Thank you for your beautiful words and courage. I know I am not a mom of special needs just a dad but I was able to translate it.