no handshakes...It's hugs

My daughter doesn’t shake hands. She says that it makes no sense. Even when explained to her, she can’t grasp the concept at all. However, she has learned to like hugs. (Good thing…We are a hugging family! :))
Our congregation has been good to try with our daughter…most especially since I began blogging about our situation. When one of the men of our church congregation (who always tries to get handshakes to no avail) tried today, I told him that he wouldn’t get a handshake but he could probably get a hug. He reached out and sure enough my daughter gave him a hug with a smile. With that, she had a line of two other men waiting happily for their hugs and the ability to feel that connection with my daughter on her level.  

*Happy Momma Moment*

Hello...Is anyone there???

Well, it’s been over a year now…
Over a year since my daughter was recommended for autism spectrum disorder testing…
Over a year…
And still nothing…


Our journey has been a lifetime in the making.  My daughter’s lifetime specifically.  We have been trying to receive an accurate diagnosis for her since she was five years old.

We have received brief moments of hope but mostly it’s been long periods of silence.

We got the recommendation.  We went through the loads of paperwork before we could even be considered for an appointment.  We’ve jumped through the hoops and ended up empty-handed so far.

I am ever thankful to God that we weren’t a family who was naïve enough to place all of our eggs in the basket of the medical community.  If we had, our baskets would be empty.

Instead our daughter was born into a family doesn’t blindly follow.  She was born into a family who will make their own path if the one available doesn’t fit.  She was born into a family that knows how to sacrifice and is willing to do that for the well-being of family members.  She was born into a family of fighters.

With being stated, I have had a lot of emotions as this “anniversary” neared and past.  I am proud of my daughter for not giving up despite how difficult things can get sometimes.  I am glad that I had the foresight not to expect anything.  I’m happy that I’ve spent the last few years (specifically the past year) studying like I was preparing for a college exam learning everything I can myself and not wasting time waiting on help from others (which still hasn’t come). 

I find myself feeling a twinge of pain when I see others getting the help that is so deserved for their children while mine gets ignored.  I get tired of being a fighter sometimes. I feel sad when she struggles more than usual and I can’t do anything else to help.  I feel angry that the system continues to fail us.  I feel exhausted on the bad days.  I feel triumphant on the good days!  I feel so honored yet humbled when I am told that God chose me for this task.  I do not feel worthy.

My opening of this post included the words, “one year…and still nothing…”  That may be what the medical community has offered so far.  But our blessings do not depend on the medical community.

It’s been one year of intense study for me.  It’s been one year of teaching my hubby what I learn.  It’s been one year of applying what I’ve learned with my daughter.  It’s been one year of seeing some positive results from what I’ve learned.  It’s been one year of baby steps (but any step that takes us forward is more than we had the day before).  It’s been a year of bonding (because everything I learn draws me closer to my daughter).  It’s been a year of acceptance knowing that I can only change what I have the ability to change. 

And probably most rewarding, it’s been a year of “big hugs” and “I love yous!”  The unemotional one-sided weak-armed side hugs have been replaced with full-on hugs (bear hugs, if she’s in the right mood).  She can see people reaching out to her and she is responding.  She can feel safe.  She can feel understood.  She can feel loved…not just loved but loved for who she really is.  There is a connection there that I have longed for so long!  I have to say…It’s been a pretty good year! :)

We went from this family photo, where she is visibly uncomfortable...

To this one, where she is fully involved.

Love those BIG Hugs!!

where Motherhood and Christianity collide

Yesterday was a difficult day for me...in my mind.

You see...Yesterday was Youth Day at the congregation where we attend.  A day that celebrated our youth by letting them take over the worship duties of singing, speaking, praying, leading singing...
It was a beautiful thing!

So, you are probably wondering what could be wrong with that.

Well, I've been getting into my own head lately.  Sometimes I simply think too much.

As I watched those precious young people making their parents so proud, I felt a twinge of loss.

I was active in church from a very early age.  I led youth services as the regular teacher before I graduated high school.  I attended a Christian college.  I worked as a youth/children's director for awhile.  I was the one planning VBS, Christian convention trips, dramatic programs, concert trips, youth rallies, youth days and all sorts of activities for the youth of my home congregation.  Working with kids was something that was natural to me and filled my heart.  As I got older, I dreamed of sharing these activities with my own kids.

Unfortunately, when my oldest daughter was a teenager, the opportunities didn't exist.  Fortunately, I had shared memories (such as teen conventions) earlier in her life because I took her with me everywhere I went.

Then my youngest daughter came along.  With several years between the two girls, things were different.  We were no longer attending services at my home congregation.  We had a new home. :)

At first I struggled to find a place.  Then I taught the transitional (between classes and worship) children's lesson.  I had found something that I could do.  I found something that made me feel like I was working for the Lord not just warming a pew.
However, my joy was dampened after awhile by the fact that my sweet daughter wasn't bonding with the other children.  She didn't seem happy.  I struggled to balance my joy and love of teaching children with my concern over my own child.  My mounting concerns eventually took their toll and I resigned my position in order to focus on being a Christian mom to my own child who I could see was struggling.

I encouraged her to participate in youth activities.  I worked to help her feel more comfortable.  I was failing.
Not only was I now not involved or bonding with the youth of our congregation, I wasn't even bonding with my own child.  I felt like a total and complete failure on all levels.

Then my research led me to autism spectrum disorder...specifically, Asperger's syndrome.
Using techniques that I had learned from a doctor and researching like crazy, I began to develop that bond with my daughter that I was missing.  I was thrilled!  There are always ups and downs but I try to concentrate on the positive no matter what.

Back to Youth Day...
Today as I watched the youth, I felt a twinge of loss...a loss of that dream that I had of being that amazing Christian mom who sang specials with my daughters, chaperoned youth trips, shared my love of drama through skits, etc.  I wanted that dream.  I wanted to be that mom who knew the joy of sharing in their child's adventures in Christianity the conventional way I had pictured in my head...But wait!

Here is where my motherhood and Christianity collide.  Here is where the idea in my head meets the reality of where I am.  Here is where I wonder what it would have felt like to live my dream.  Here is where I realize that I'm not following the pattern in my head but rather I'm blazing a new path seeking Him!  (Ok...Maybe "blazing" is too strong of a word but it sounds more powerful than "stumbling through"...and "blazing" certainly lifts my spirits more. :) )  It wasn't that I was feeling loss in the sense of not having something but rather I was feeling lost in that I wondered where we fit in.

I may not be THAT mom (the one in my head), but I am still a Mom who loves Christ.  I am still a Mom who desires to set that good example for my kids.  I am still a Mom who loves, prays for and teaches my kids what is right.  I'm the Mom who loses sleep so I can make sure that my family is safely tucked in before I close my eyes.  I am the Mom who sacrificed my dreams of a photography career in order to be a special education home school teacher.  I am the Mom who has studied so hard (and continues to study) to help my child that sometimes I feel that I should have an extra college degree!  I am the Mom who doesn't give up trying to explain spiritual things to a child who sees everything so literal.  I am the Mom who will keep looking to find opportunities where I can share Christian activities with my child in a way that lets her be who she is so that I don't turn her away from Him. 

I am the Mom who worked for weeks preparing my daughter for VBS this summer.  

For a period of time I got to see this smile...

and my girl participating in activities (and even winning a game of balloon toss)...

Before I saw my girl, go back into herself...

And I realized how much effort that she had put into that day...

I am the Mom who will keep trying.

I am the Mom who will keep celebrating the victories.
I am the Mom who prays that her twinge of loss can be used 
as a spark to be more creative.  
I am the Mom who will keep supporting, loving and giving.

I am the Mom who is so proud of her girl!

I am that Mom!

So, please forgive me when I sometimes am struck with a feeling of loss and don't misunderstand my feelings as anything negative.  I absolutely wouldn't trade my life now for what was my dream.  It isn't that I've lost anything...I've gained so much!  It's just that sometimes in some ways I am still searching to find my place and from time to time I feel a little lost.

Tears, Prayers and Memories

In the early morning hours, waiting on my darling daughter to fall asleep...as has become our lifestyle (thanks to chronic insomnia which even medicines haven't been able to control but that's another story)...I stumbled upon a blog post shared by someone on social media.  The post was about a family facing the birth of a child asking for continued prayers.  As I dug deeper, I found that the family was facing the birth of a child with an extremely low chance of survival according to the "experts."  My heart ached for this young family as they sought to see God's will in their struggles and faced them with prayer.

Then tears and memories came rushing in like crashing waves. 
I remembered carrying the child over which I was now losing sleep.
I remembered her being a night owl even in the womb.  (Her kicks and twists becoming more aggressive while I was trying to rest for the night.)
I remembered choosing her middle name, Hope, for several reasons but mostly because that was what I was holding onto as I carried her during a difficult time in the pregnancy.
I remembered ER visits.
I remembered her early arrival.
I remembered hearing the word "STAT" from the doctor as my warm newborn was hastily put on my stomach so the doctor could deal with complications.
I remembered watching her struggle to breathe before being rushed away by ambulance to NICU at a bigger hospital.
I remembered the compassion of the doctor as he released me reluctantly to be with my baby instead of keeping me to have the blood transfusion as he preferred.
I remembered visiting her in NICU...a machine helping keep her lungs inflated, machines monitoring her, lights helping with jaundice.
I remembered our first Mother's Day...only getting to visit her during visiting hours.
I remembered all the struggles that we both faced with our health issues over the next several months.
I remembered that once I could hold her...I never wanted to let her go.

And, in that moment, with tears flooding my eyes, I said another prayer of thanks.

My daughter started off life struggling just to breathe.  Her life has been a continual line of hurdles to overcome.  However, she isn't alone.  We face each challenge as a family...a praying family.

We have so much for which we are so thankful and I say another prayer of thanks every time I reminded of that fact.