5 Things You Should Never Say

There are some things that should just never be said. Being a mom of a child with special needs I have had many comments made to me most of which were meant to be encouraging, informational or helpful but unintentionally have been hurtful, judgmental and demeaning. So I decided to make a list of the Top 5 Things to Never Say to a Mom (Dad) of a Special Kid.

5) "He/She seems just like ________________" 
(Sheldon from Big Bang Theory, Max from Parenthood, Joe Blow from down the street, you fill in the blank) What you may see as a simple observation or even compliment may not transfer the same. When Ben was first diagnosed a well intended friend compared Ben to another child we both knew. The child was a little older and diagnosed with significant disabilities. While it was true that they had many similar traits (more than I had the courage to admit at the time) all I could do was over-analyze why/how my son resembled (and more importantly did not resemble) the other child. There is really nothing about this kind of statement that is helpful. It is best to let the parent determine when/which qualities mirror those of another.

4) "What is wrong with him/her?"
This should be obvious but you wouldn't believe the number of people who have asked me. It is just wrong. Don't ask it. For any reason. EVER!!!

3) "What is his/her prognosis?"
For oh so many reasons. Mainly though.... this question scares the crap out of us. For most us we are living a day at a time and thinking about the future too deeply will likely cause us to sweat, hyperventilate and break out in hives. The reality? For the most part we do not know the future, (which is terrifying) honestly even the best doctors will not attempt to predict outcomes. We already obsess over the "What ifs" without having to rehash them with everyone we meet. If you need more clarification see What will Ben need to know?

2) Anything that begins with a negative statement. 
More times than I wish I have heard "He talks weird. What's wrong with him?" This is the deadly duo. Two consecutive "nevers" in a row. Say this to the wrong person at the end of her (his) rope and you will likely need to duck. Once a person begins with a negative, my ears shut off and I hear little of what they are trying to say to me.

And drum-roll please.........

1) "You should ______" or "You shouldn't ______"
Please never, ever begin a sentence with these two words. I do not care if you were once a special education teacher, if your grandson has a disability, if you are the gluten free guru or even a parent of a special needs child yourself do not say it. Just don't. These two words carry more shame and guilt than any other two words in the dictionary. No-one, I repeat NO-ONE wants to hear "You should have done blah, blah, blah" Unless you are me (and you are not) please do not direct me on what I SHOULD/SHOULDN'T be doing.

For the most part I have an awesome support system consisting of family, church family, friends, teachers and random strangers. If you develop a relationship with that special mom (or dad) you will likely find out what you need/want to know in time and eventually even offer solicited advice. Just wait until the time is right. Till then watch for the next edition....
What Every Mom (Dad) of a Special Kid Wants to Hear! (or at least this mom anyway)

Silence is…. Quiet

Or golden but that depends on who you ask. The last 10 days my oldest kids have been on a mission trip to Alabama. A few years ago my friend went on a fast while her daughter went on a mission trip as a reminder to pray for her daughter whenever she felt a twinge of hunger. I really like my food and I knew fasting from food would likely only make me crabby and less apt to pray. A spiritual level I have yet to attain I guess. Instead I thought I would turn off my radio. I spend a lot of time in my car and I thought that would be a good time to reflect and hold my kids up in prayer. Did I mention I spend a LOT of time in the car and I also REALLY like my music. 

For an extroverted (ENFP if you are a Myers-Brigg fan) girl like me, quiet is neither desired or enjoyable. I like people, parties, friends, conversation, music, basically noise. I enjoy noise. Having a conversation with me is easy I rarely ever experience that “awkward silence” people speak of. I fill it with thoughts, dreams, words, oh and music. I like music. A LOT. 

The first things were good. I felt very “spiritual”. I talked to God a lot. I prayed for each person on the mission trip team. I prayed for my husband. I prayed for my family, my extended family. I prayed for my patients.  I prayed for the cashier at Arby’s (she seemed to need it #crabby). I prayed for the people in the cars next to me, who looked at me funny. (probably because I appeared to be fully animatedly talking to no one) I prayed for my friends, for my church, for my pastor, for my neighbors, for my dog. Yes my dog. This all pretty much got me through Day 1. And then I started singing. Mostly the only songs I know word for word are hymns. I guess all the years of doing nursing home services paid off. I know every word to those hymns, even the 7^th and 8^th verses. At that point I am sure God was tempted to come to me in a burning bush and beg that I turn back on the radio. (If you have ever heard me sing you would understand. But He had to hang in there because He had more to teach me. Poor God. Some of us take A LOT longer than others) I sang and I sang. Day 3 came and there it was… “The Awkward Silence” I could lose myself in my thoughts for a bit but then the silence would return. AND IT WAS QUIET.  Day 4 a funny thing happened. Me who never wins ANYTHING won a raffle. Guess what I won????? A BASKET FULL OF CD’s. No I am not kidding. Either God was testing me or begging me I can’t tell which. A couple more days of praying, some singing and awkward silence happened. 

So quiet in here

About Day 7 I noticed that I didn’t dread the silence so much. In fact I rather looked forward to the broken prayers and off key “How Great Thou Art.” I also experienced something else. A presence. A quiet presence riding along with me. In the quiet, I began to discuss with God the people I love. Not just a list of wants or asking God to mold the person in a way I see fit but to really stop and listen. I teach and I know that prayer is a two way street but the honest truth I am so stinking bad at listening. I often go without answers to my prayers because I do not stick around long enough to hear them. It breaks my heart and excites me all at once.  What have I missed? What do I have to look forward to? 

Another lesson learned in my experiment/fast? NOT ONE person noticed the radio was never on. Not my husband, not my friends (love you Janet), not my children. NO ONE. So what happened instead? We talked! I listened. I enjoyed my people. 

Honestly, tomorrow I cannot wait to listen to my CD’s. I cannot wait to let Meredith Andrews lead me in praise and worship but…. I will hold to what God has taught me. I will shut up once in a while. I will (try) to listen more.  I will not wait for the next mission trip to be quiet.  A new trend maybe? Like #MCM (Man Crush Monday) or #TBT (Throw Back Thursday) we could have #TOT (Turn off Tuesday) or not…. lol

Thankfully God is not finished with me yet “being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.” Philippians 1:6

Thanks Marge!

On a field trip to the Minneapolis Institute of Art Gracie’s teacher asked the kids what integrity was and they replied in unison “Integrity is what you do when no one is watching.” That got me thinking. Could love have that same definition? I mean it is great to give chocolate, jewelry on a special day (especially chocolate or coffee, coffee is good too) every year to show your love but is it not what you do every other day of the year even when no one is looking that matters? 

It is the people who love, give, do, (unconditionally) even when no one is looking that really inspire me. The people who day in and day out give sacrificially without glory or fanfare just because it is the fabric of who they are.  This in my opinion is the essence of  love. 

I was thinking this morning of the people I have met over the years. Random people who do not even know me but have gone the extra mile to show love and concern. Little angels God has placed when/where I needed them. One story came to mind.

I was working for a hospital and it was looking more and more every day like my position may be going on strike. I knew there was NO way I could ever afford a strike. I was a newly single mom of three kids and not that picketing for better wages/benefits wasn't for me, it was just that food and shelter took priority. As a result I found myself at the Anoka County Workforce Center. I was looking at my options as the pending strike loomed over me. I had no idea what I was doing so I approached the lady behind the counter. I don’t know her name so I am going to call her Marge. She looked like a Marge, a no-nonsense kind of gal. Marge asked me what I was looking for so she could help me get started. I told her about the strike and then I told her of the last few months which had not been pretty. She looked me square in the eye with deep compassion (and a little foolishness because she had no idea the can of worms she was about to open) and she asked “Oh my goodness that is a lot, are you okay?” I realized in that moment I was NOT okay. Not even close.  I opened my mouth but no words came out, my mouth betrayed me. Tears started to run down my cheeks. I tried to speak but all that came out were whimpers and groans. I was bawling. Seriously the ugly, messy, snot flowing kind of sobs. The kind you should only do in the privacy of your own locked bathroom, the kind do not want anyone to ever see. Marge quickly came around the counter she grabbed my arm and pulled me into a smaller room. Honestly she did not say much she just hugged me. (as I dripped drool and boogers all over her shoulder) She held me until I was done and then she showed me the computer and where to begin my search. 

I did not find a job that day nor thankfully did I need to. My job did reach an agreement just in the nick of time and I never saw Marge again. Yet I will never forget her. No one  knew what Marge did for me that day. She cared, she sat, she wiped tears, she hugged. She loved with integrity. She was not too busy to see the needs that stood before her. That my friends is love. True, sacrificial, unconditional love. I aspire to be like Marge. Often I am too busy, too stressed, too self-centered to see what has been placed in front of me. This is my Valentine prayer. Not just to love one day, not to love for the glory or the “credit” but instead to love in the way of action, the kind of love that does not look to be appear fancy and perfect but instead is messy,  full of tears, boogers and hard work, even when no one is looking.

Because that kind of love my friends is a beautiful thing.

My Emmanuel Moment

 “The virgin will conceive and give birth to a son, and they will call him Emmanuel” 

(which means “God with us”). Matthew 1:23

It has always been my favorite part of the Christmas story; when the angel explains the new baby’s name. Emmanuel, God with us. The very name of Jesus literally means He is with us. I heard the verse many times but the meaning never meant much that is until my “Emmanuel Moment”. The story takes place in Thanksgiving Day 2001. Pretty much my whole life had fallen apart. My husband left, my son was diagnosed with autism, I was behind on every single bill, about to lose my house and here it is Thanksgiving and now all three of my kids have the stomach flu. It wasn’t pretty. Besides all the obvious conflicts I was also fighting a battle with God. I was trying to understand my faith and where He was in all this mess.

Before all this Thanksgiving chaos I had come to understand who God was and what He meant to me. I grew up being abused by my father and this created quite a conflict for me with God. Child abuse is something that can be very hard to understand in reference to God. I mean if He is God why doesn’t He just do something. This lead me to some complicated thinking of who God was and what He stood for. Walking this path I did uncover some truths when it came to God. 

1.) God hates abuse.

2.) God hates anything that messes with children.

3.) God gives us a freedom of choice, all of us, even those of us who do hurtful things with our choices.

4.) God can make good out of evil. In fact He is pretty good at it. 

Learning this changed my life forever. Yet still somehow I misconstrued the very character of God. I had determined that when I was young I didn’t really know God, I did not understand who He was therefore I experienced some difficult times. Now subsequently I know God and understand His ways and am choosing to live for Him things shall become easier. 

Do you see the conflict? If life was supposed to be less complicated and more comfortable God had truly let me down. In fact life only seemed more stressful and intensely painful. I didn’t understand. I felt betrayed and alone. 

I cannot begin to describe the aching of my heart that Thanksgiving Day.  The hurt became so strong I lay down on the ground with my face buried into the carpet and asked God to remove me from the pain. It even hurt to breathe. I was not sure how I would even regain the strength to physically stand again. Thankfully I would not have to. 

While on the floor I wept in pure anguish and God heard my cry. As I lay there on that floor I began to experience a warmth come over me, similar to a warm blanket being draped over me except there was no one else in the room. It is hard to explain but I knew I was NOT alone. My heart heard a soft whisper. “Lisa you are not alone. You cannot do this anymore. You can’t but I can. We will do this together.” I felt a body next to me with arms wrapped around my shoulders. I was not alone. Emmanuel, God was with me. 

A new perspective came over me. Life in this place, on this planet is tough and sometimes it downright sucks. Horrific, unspeakable things happen. Things I cannot begin to understand or explain. God never promised me comfort only that He would walk with me hand in hand. I believe he held me when I was a young girl and wept over the innocence that was stolen away just as much as I believe He was there with me in my living room that day.

You might not believe me. That is okay. Honestly it is okay. I know I sound a little crazy describing it.  Yet I know it is true and that is why I have to tell it.  As long as I live I will never forget it. I have never again experienced God like I did that day but each time I tell the story I am reminded of God’s incredible love for me. I am reminded that on a day when He could have been anywhere else. He was there. On my floor. Next to me. 

Emmanuel=God with us

Epilogue-Five minutes after my “Emmanuel Moment” a friend called and asked if she could stop by she had a card for me that she was going to give me later but believed God had placed it on her heart to come then. Inside was a check for more than $3000 that my friends had collected for me. Turns out God wanted me to know He was with me and that He had also surrounded me with a bunch of pretty awesome people! 

May your New Year be filled with peace and joy and many “Emmanuel Moments”.

Knight in Shining Armor?

Tomorrow I will have been married to the most amazing man for 10 years. Honestly 10 of the best  years I have been on this planet. Before Drew life was well…. hard. I was a divorced single mom of 3 kids (Mik and Ben were 4 and Faith was 2) and living in a house I couldn’t afford. (Yet somehow God always provided but that is for a different post) I had no intentions of dating so I was clear that when Drew asked me to a casual dinner we were just going as friends. I never admitted it to him I am pretty sure I was in love that night. Just a week later I received a Mother’s Day card from Drew because he wanted me to know what a great mother he thought I was. When I opened that envelope I was positive I loved this guy. A couple months later we had  a conversation where I questioned if he really knew what he was getting into. He told me...“Lisa, you wouldn’t be who you are, who I care about, if it weren’t for your three kids. They make you who you are. And I love that person.” That was the moment. The moment that I knew either I was going to marry this man or have my heart broken beyond repair. 

I was guarded and proud. After all it is really at the core of every chick flick right? Woman is down on her luck with children in tow. Enters man on white horse, conflict, man rescues woman and all lives happily ever after. I was proud and didn’t want to think I needed saving. The secret was I did. I needed rescuing. Thankfully God had planned a little rescue mission and blessed me with Drew.  

One thing I am sure of in the midst of shame and pain God brought me a precious gift; a man who loves me, my kids and is a good dad and husband. He is my best friend and a perfect balance for me and my somewhat eclectic personality. I know some of you are smiling right now because you know me and exactly what I am talking about.   

So…. He didn’t really come on a white horse instead in an awesome sporty black Acura but the rest of the story is completely true. 

Photo taken by Karen Feder Photography   http://www.karenfederphotography.com/