Sunday, April 19, 2015

A neat story and my MOPS talk

I was recently asked to sit on a panel for our MOPS. The topic was "courage to face your mom fears". There was an adoptive mom, a working mom, a blended family mom, and then me. Special needs mom ;) I thought I would share it here on the blog since it's been awhile and then share a really neat story about Leila from the other night.

Yesterday I cut about 3 inches off my hair and then dyed it darker again. I was giving Leila her bath and she kept scripting this scene out of "Monsters vs. Aliens" and I thought it was funny because she hasn't watched that movie in a long time. So I was thinking what is she trying to tell me? She just kept repeating it over and over again. And then I thought I look like the main character, Susan, before her hair goes white. I have the same cut and color now! So I said, "Leila, do I look like Susan?" and she said pointed at me and said "You're her!". What?!? Leila has had lucid moments before but rarely in front of me. Mostly with her therapists or at school. It was so SO SO AWESOME. I just relish in those moments!

So here is my talk that I gave. You get to read it, without hearing my cry or blubber through it. Lucky you!

I admit I didn’t have any fears about being a mother before I had kids. Being a mom was something I had dreamed about for as long as I can remember. The whole idea of being a mommy is very exciting, right? 7 years ago, when I was pregnant with our second child I had no reason to be fearful of being a mom again.


So, I have a 9 year old, Lucy, a 7 year old, Leila, and a 2 1/2 year old, Lily. Our Leila is on the spectrum. When Leila was 2 1/2 she was diagnosed with Autism Spectrum Disorder and our world got turned upside down, and my plans for the present and the future changed and that’s when the fears started flooding in. In the beginning, the fear presented itself as anger and anxiety. Why us? Why Leila? Will Leila transition to a regular classroom? Will Leila ever hold a conversation? Will Leila ever look at me or say my name? On and on and on. In the beginning I also did not support myself very well and I didn’t have a close relationship with God. So when these fears started and I questioned my abilities and questioned God’s intentions you can imagine I was in a very, very bad place. These past 4 1/2 years have been a continuous roller coaster of ups and downs, progress and regression, happiness and pain and the ultimate growing and learning experience. So revealing my fears is a very personal thing. I don’t often reveal all my layers… ask my girlfriends… but I think my fears are something that all moms have in one way or another. Mine just have another layer behind them.


In the beginning and throughout Leila’s life so far these are the fears I have had and sometimes still face:


I fear I’m not doing a good job and that I’m not doing enough. When you have a special needs child there is always something new you should be doing or trying to help your child. I cannot think of a community of special needs parents more divided… new diets, new therapies, new medicines, you should’ve done this; you shouldn’t have done that… Being a mom is hard in general. Add special needs on top of that and your job gets extra hard. My “boss” can’t have a conversation with me beyond her very basic wants and needs. So I do everything I can on my side to help Leila and beyond that I give to God. Because God does not give special children to special people. God gives you the child that is meant for you. My Leila is a beautiful, wonderful child of God and he reassures me that simply being her mother I am enough for her and enough for him.


I fear for Leila’s future. One of the most frustrating parts of having a child with special needs is that they are so unpredictable, or at least mine is. I can predict that Lucy will more than likely graduate with a high school diploma, go to college, get married, have babies. With Leila I don’t know. I can tell you what I hope for her and that is that I hope for her the same things that Lucy will have. Will that happen? Right now my answer is simply no. Right now Leila is not on a path to have those things. Will that change? Maybe. Right now I must take comfort in the fact that Leila’s future is not in my hands. Her future is in her hands and the hands of God. I can only take Leila so far. The rest is up to her and the grace of God. My hopes for Leila are endless and I believe she is capable of a lot. God shows me this every time I underestimate her and she proves me wrong. Romans 15:13 says…
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. (NIV)


I fear I will always battle my will to control and not trust in God. Trusting in God is hard for me. I have control issues when it comes to my Leila. As a mom it is my job to fix things. Got a boo boo put a band aid on it. But I can’t fix or control Leila. One, well, because Leila doesn’t need fixing. Two, I can’t control Leila or her life. Don’t get me wrong I can in a certain way… and I can control her surroundings to a certain point. But ultimately it’s not my job to control Leila. It’s my job to guide her and it’s my job to love her unconditionally. I love my daughter so fiercely that when things don’t go as I anticipate (which is quite often) I tailspin into doubt, fear, and mistrust in God, it is quite simply my first instinct. However, through the years I have slowly learned (and still learn) that I must, must trust in God. I’ve learned that the power of prayer is amazing and it doesn’t have to be a beautiful eloquent prayer for God to hear me. I’ve learned that no matter how many times I mess up God believes in me. Because he wouldn’t have chosen me as Leila’s mom unless he thought I was the best fit for her. In the end “I want to be a woman who overcomes obstacles by tackling them in faith instead of tiptoeing around them in fear.” And I do. You don’t want to mess with this mama bear.


I fear you will judge me. I get told a lot, you are so strong, I don’t know how you do it, I can’t imagine.  Well, I’m not strong half the time, I don’t know how I do it either, and no, you can’t imagine… just the way I can’t imagine living your life. I fear you will look at Leila and see a bratty 7 year old. Because you see Leila’s autism is invisible to the unknowing eye. She is a gorgeous little girl and you wouldn’t know something was up unless you looked closer. If you looked closer you would see she doesn’t make eye contact really. You would see all her dollies that she brings everywhere for comfort (naked Barbie dolls too, awesome), you would see she can’t answer my questions. You would hear a voice that knows no difference between inside and outside. And I’m afraid you won’t see those things and judge the fact that a child as big as Leila is freaking out because I won’t let her bring in 10 dolls, only 3. Or, you’ll see me struggling to walk (or carry) Leila out of a situation and you’ll stare in disbelief that a child her age is acting so uncontrollably. So how does God help me through this fear? By surrounding me with friends that don’t care that Leila is different. By giving me friends that when I tell them my fears they are there 100%. They don’t leave and they don’t judge. They are a direct  reflection of God’s love for me. They are my people and God placed them in my life because he knew they where right for me. Just like he placed Leila and I together.  I also know that it doesn’t matter what people think. The only opinion that matters is his. Through him I gather strength whether that is weekly, daily, or by the minute.


So in the beginning the fears were stronger but with time they have dissipated and grown weaker. Only occasionally do they rear their ugly heads. Now that I am better supported both physically, emotionally, and spiritually I know I can step out in faith and trust for myself and Leila and not be fearful nearly as much. I now know the power of prayer, of a good girlfriend, and of God’s love for me and my Leila.