Category: Family

  • When Dreams Die

    When Dreams Die

    We always had a Christmas program. Every year, our children’s choir director, Ms. Mary Evelyn, would bestow upon us our musical. Somehow, I always ended up being Mary. I was ok with that because Mary always had a solo. Of course she did! She WAS the mother of Christ.

    We rehearsed and rehearsed the musical until we had it down pat. It was fun and exciting every year. This was the beginning of my life–long passion for music. I have never completely stopped playing music. When I found out I was pregnant, a new dream began…the dream of having a child who would do these same things.

    TODAY IS NOT YESTERDAY

    Today, our church had the children’s choir sing. I sat and watched the children of our church sing and speak lines they had memorized. They did a fantastic job. But, as I sat there, my heart felt sadness I could not stop. It was running water of sadness that enveloped my whole being: my son was not part of this choir. I realized: My dreams of parenthood were completely squashed. Totally torn down the bone, and then, the bones of these dreams were pulverized. My son could not ever do what those kids did today. He cannot stand in one place, he tries to sing, but without words, he has no guideline, he cannot memorize parts, etc. He just cannot do this.

    As most of you know, Asher is autistic. Amongst his myriad of autistic behavior, the most prevalent is his inability to speak. People ask, “Is he non-verbal?” No. He is verbal all right. You just cannot understand one word coming out of his mouth. He tries, though. He works so damn hard.  I don’t think I have ever seen anyone work so hard for something in my life.

    Our friends’ son walked to the microphone and sang his solo perfectly. I tensed.

    “WHY DID YOU DO THIS TO MY CHILD?”, I asked God in an angry tone. What I felt in my spirit was frightening.

    “Autumn, dear, I believe you meant to say, ‘Why did you do this to ME?’”

    My entire being was silenced.

    A FAMILY AFFAIR

    Autism, as I always say, is a disorder the whole family experiences. In this case, Asher would have been absolutely miserable in the children’s choir. The way he feels things, sees things, hears things, smells things is on high alert at all times. Though my heart would soar if I could get him involved, he would be miserable.

    LIFE OR DEATH?

    What happens when dreams die? I pondered this throughout the rest of the morning. It seems to me Jesus told us what happens when dreams die.

    New dreams are born.

    Dreams, you didn’t even know you had because they were hidden by all the fluff, are resurrected. They are deeper and far more meaningful.

    After church, as I was talking with someone when I heard, “MAMA!”. I turned around to the brightest smile connected to the greatest heart I have ever known: My little boy. I picked him up and wrapped him in my arms. As he hugged me back, the agony of the death of my dream was gone.

    When you are a parent of a child who has challenges (and lets face it, who is COMPLETELY different from their peers) you watch your dreams die often. In that death you find it fertilizes new dreams. Our new dreams are of our children thriving inside of their challenges and facing their fears and conquering them.

    I watch my child fight his battles everyday. Sometimes, he wins. Other times, he does not. His biggest worry is not whether he has his parts memorized or whether he has his lyrics down. No. He worries he cannot get his point across. He worries if he has made someone mad or sad. As I said, he has a great heart.

    NO MORE SAD TEARS

    My time of tears and sadness are over. I will, again, grieve the death of my dreams. It will happen. I am not perfect. I will, again, be reminded of the new birth of new dreams. Dreams bigger and brighter than any of the other dreams I previously grieved. Why are they bigger and brighter?

    Because…I see God’s love every time I look into the big blue eyes of my baby. God adores me. God ADORES him.

    My son is my dream. He embodies love and kindness. This is a dream come true. This dream is life. This dream can cause real change in this groaning world.

    Even though my little boy will never be “normal” (whatever that is), God says to him,

    “COME AND DANCE AND PLAY! Let ALL the children come to me! And, Asher, show me that booty dance! I love that dance!”

    When my dreams have died, God’s dreams have just begun.   No matter what roadblocks are put in front of my boy, God says,

    “You are MINE, little boy. NO ONE can separate you from me. You just be you…this is all I ask. I made you perfectly imperfect. You have a purpose, and that purpose is to love me and love everyone else.”

    In all the productions and chaos and pride and societal norms and rules and regulations and fake and falsehoods and bullying and fighting, God whispers to me,

    “None of that is real. If you want to see “real”, look at your son. He is mine, and through him, I shine.”

     

     

  • My Beautiful

    My Beautiful

    My feet hit the floor. I concentrate on the way my weight shifts on the bottom of my feet. This is my only focus…besides counting my breaths.

    I have a severe anxiety disorder and a child who has been diagnosed with a global developmental delay. This diagnosis will likely be changed to the autism spectrum soon. He is mainly non-verbal. He loves to run from us in any type of social environment (elopement), and he has to be carefully watched so as to not injure himself when he has meltdowns. These meltdowns generally end with an injured parent (namely me). We call them “atomic meltdowns”.   The grade of meltdown is discussed between my husband and me, and it generally ends with us trying to come up with a way to help our son deal with his emotions in a more appropriate way.

    I have learned to remain strong and calm in the storms. Walking meditation happens daily for me. Actually, several times a day. I believe I may have conditioned my floor to the metronome of my silence.

    I walk. I breathe. I count.

    I am not angry with my son. I am helpless. All of the therapy in the world cannot heal the shattered heart a mother feels when her child cannot control himself. At times, my son will desperately try to communicate, and I cannot comprehend his meaning. He will get mad at a toy and bang his head repeatedly on the floor. He lashes out with his fists and nails and leaves me bleeding and injured. My heart will never be the same from all of the shattering. Thank God for mama’s rescuers: God, a family who loves me, and meds.

    I walk. I breathe. I count.

    I hope…

    The more I walk down this road, my compassion sometimes wanes, but more often than not, it surprises me at how strong love dictates my actions. I tell my son daily, “If I could pick one kid in the whole wide world to be my kid, I would pick you every time.” Why? He is my son. I see generations of my loved ones in his eyes. I see him, too…so beautiful and wonderful. Intellect beyond my own lives inside of his ever-thinking mind. Though not with grace, he tackles his life daily with the courage of a lion. This journey leads to somewhere. Nevertheless, the end is not the goal. The present is the goal. I try my best every second.

    I walk. I breathe. I count. I hope.

    I learn…

    How could I have known my son would be my teacher? I love him with the heart of a mother, the mind of a therapist, and the spirit of one who knows love can conquer all. And when I feel like a failure, I learn that perfection is not what my son expects of me. He knows I love him. This truth is all that matters.

    I walk. I breathe. I count. I hope. I learn.

    I pray…

    I will always adore the precious gift God felt inspired to present to me. I accept the gift in full and with great appreciation and joy. He brought bright sunshine into my life the day my son was born. Sometimes, though, I fight with God. I sense He does understand how wounded I feel for my son. I hurt when he hurts. Day in and day out, the small details are where I find the achievements.   No grand illusions of major milestones being accomplished on time. The only the assurance is that growth will continue… no matter how small the steps. I pray. I fight with God. I thank God for letting me feel safe in my honesty.

    I walk. I breathe. I count. I hope. I learn. I pray.

    I realize…

    It is not about the victory. It is the character, humility, and love I show during life’s brisk winds.

    I walk. I breathe. I count. I hope. I learn. I pray. I realize.

    I embrace…

    I wrap my arms around the whole situation: Asher’s meltdowns, my fear of failure, the anxiety of everyone, and the joy in the midst of it all. I give it all a giant hug, and let it go. I set my eyes on the moment. It is all I am given.

    I stop.

    I walk back into the room with my son. He comes to me and signs “tickle”. He giggles and smiles. He reaches out to grab my face for kisses. He wraps his arms around me as if to remind me: You are my safe place. He does his silly dancing. He loves family hugs. He loves his trains. He is excited about everything, even doing dull household chores. He struggles to make the sound “Oreo” to get his favorite cookie, and is all smiles as he demolishes it. It’s perfect. The light from my son is almost blinding.

    So…

    No matter how many times I have to walk the floor, my son is MY BEAUTIFUL. He is my sunshine. How proud I am to be his mother!

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  • Fortune Cookie Kid

    If you were to have told me how difficult being a parent was before I had a baby, the thought in my head would have been, “How difficult can being a stay-at-home mom be?  Really?  Stop your griping and complaining!”.  Yeah.

     

    Not only is it difficult to be a stay at home mommy, but being a mommy of a child who is sick most days, and on the other days we have therapy appointments and doctors appointments and constant issues with his anger management and tantrums is far greater of a task than I could have ever imagined.  Our days start and end with therapy.  I am always trying to find different ways of incorporating the things he needs work on into regular play.  Then there are the tantrums.  Yes…every 2 year old has tantrums, but my kid has breakdowns like you would not believe.  Not just a few times a day, even.  ALL day.  I know it is because he is trying so hard to communicate.  We do a few signs, and we are learning more everyday.  However, he is still learning when he needs to use them.  It is an ongoing task.  And, forget using the vacuum or going out to eat.  Not happening if you want an enjoyable meal.  As for vacuuming, I have to do that when he is with Steve somewhere else.

     

    So, in light of these things, this little story added a very bright light to a very dismal day.

     

    Each Wednesday night, a few of the people from church come over for a Bible study.  Once a month, we do a dinner.  A couple of weeks ago, we did an “Asian Cuisine” night.  It was divine.  For dessert, we all reached into a box, grabbed a fortune cookie, and read our fortunes out loud.  Actually, that in and of itself is funny:  a Bible study reading fortune cookies.  ANYWAY…I digress…  Everyone read their cookie, we all laughed, and they started in on the study while Asher and I played in his room.  After they all left, I picked up from the study, and found a couple of fortunes lying on the floor.  I threw them all away.

     

    In order for you to really understand this story, I need to tell you how often I clean the floor in my house.  I sweep at least 3 times a day.  Sometimes more.  I straighten the house every night.  I have to be very careful with Asher because he is still eating everything.

     

    The other night, I was sitting next to him watching him with the train set.  I looked away for a second, and there he stood with a little fortune cookie fortune.  “Where in the world did you find this, Asher?”  His response was, “Joy, joy, da da, ya ya, ba ba”.

     

    “Ok, ” I said, “lets read this”.  It said, “Look for the dream that keeps coming back.  It is your destiny”  “Huh, ”  I thought.  “I don’t remember anyone having this fortune!”

     

    I sat there for a second and looked at my sweet little boy.  He was my dream.  He definitely keeps coming back (he he he).  And, I do believe deep down in my heart that I was destined to be his mother.  Even with all his little quirks, tantrums, health problems, and issues, he lights up my life brighter than any sun or star.  God knew he was in good hands with Steve and me.  I trust that.  Even though there are days I am not sure I can go on…I trust God.  Asher is the perfect little boy:  imperfections and all.  Of all the children there ever was or ever will be, I would pick him every time.  So, he is my dream and my destiny.  I guess God can even use fortune cookies to lift your spirit.  I love my little boy, and I am so happy God used him to remind me that what I do makes a difference.

     

  • Clean Sheets

    While snuggling down into bed, I began to think of how wonderful clean sheets feel.  From there, I began to count my blessings.  These are the thoughts I had.

    1.  I am thankful for clean sheets.

    2.  I am thankful for a machine to make my sheets clean.

    3.  I am thankful for power and water to make my machine work to make my sheets clean.

    4.  I am thankful for good health to be able to remove the sheets and put them in the machine to make my sheets clean.

    5.  I am thankful I have food to keep me healthy to be able to put the sheets in the machine to make them clean.

    6.  I am thankful I have dishes to put my food on to make me healthy enough to make my sheets clean.

    7.  I am thankful I have a table to put those dishes on so I can eat and stay healthy so I can make my sheets clean.

    8.  I am thankful to have a roof over my head to cover the table, the dishes, and the machine to keep my sheets clean.

    9.  I am thankful to have a bed to sleep in so I can stay healthy and keep  my sheets clean.

    10.  I am thankful to have a family to snuggle down with in the bed so we can all enjoy the clean sheets!

    11.  I am thankful my family loves each other and has good health so the laughter comes easier while we snuggle in the clean sheets.

    12.  More than all, I am thankful to have a Savior who is sufficient enough that even though I may not have any of those things, He will supply my every need.

  • Just Find it and Fix it

    Just Find it and Fix it

    After a long fun weekend, we packed up and headed to Birmingham for not so much fun.  Asher was scheduled to meet with the neurosurgeon at Children’s for the first time.  He was tired of being in the car, and I was nervous.  I had some idea of what we would hear, but I was surprised, too.

    Children’s is an awesome facility.  The lay out is set for kids to feel comfortable in their surroundings.  They even had clowns on hand for face painting.  While I filled out paperwork, Steve and Asher walked around to check it all out.  Ash even got balloons painted on his leg!  If it wasn’t for all the yucky doctors, it would be a fantastic place to visit.

    The neurosurgeon was a very nice man.  He took a look at the MRI, studied Asher’s head, and told us the news.  He saw nothing that concerned him with his MRI.  Yes, the cyst was a category 1 or 2 (which is small), and yes the water around the brain was there, but the amount was not enough for any concern.  Great news!  However, when I asked if these things would be causing him developmental issues, he said no.  It may be a genetic disorder.  “WHAT?”  Asher has a ridge on his forehead where his skull didn’t grow together correctly.  This plus the developmental issues point to genetic problems. He called a colleague to tell him what to order for the blood tests.  He also ordered an X-ray to study Asher’s skull to make sure there were no other problems.

    We waited for the genetic doctor to fax over a list of possible disorders.  When the fax finally arrived, there was one disorder.  One disorder with a 5 page synopsis of the disorder.  It is called GA-1.  It is a metabolic genetic disorder which prohibits the body from turning Gluteric Acid into energy.  Most of the symptoms Asher has could be explained by this.  However, we will not know the outcome of the blood tests for another month.  If the test comes back positive for this disorder, we will have to implement a lifestyle change that will follow him throughout his life.  It could be very dangerous.

    Basically, we don’t know anything.  I just want them to find out what is going on with my  precious fella and FIX IT!!!!   I’ve spent a majority of my life putting doctors on a pedestal, but now I understand why they call medical doctors “Practitioners”.  They are just really smart people who are trying to figure it out.   I’m not blaming the doctors.  They are doing the best they know how.  I’m just impatient.  I want to know what I can do to help my boy.  Right now, Steve and I are fumbling through all of the medical mumbo-jumbo in hopes to help find the needle in the haystack.  It has been a horrible journey.  This road continues before us.

    Some would be so bold to say, “Just trust the Lord”.  To this I respond, “Well…of course I do!”.  However, I am human.  In this state of being, I am a sinner.  Therefore,  I generally fail more than fly.  Trust in the Lord only comes from the Lord.  In and of myself, I tend to be more like Job than Jesus.  Just being honest here…please don’t crucify me.

    I want to thank everyone for their prayers.  Many of you have asked what is going on, and I am certainly willing to discuss it.  To be honest, though, it is easier to write it down.  Every time I talk about it, my frustration goes out the roof.  I love you all.  I just want my boy to be well.  My heart is trying very hard to  not shatter on a daily basis.

  • Fresh Pain and Paint

    One day several years ago, my husband and I decided our home needed a little “pop”.  From that moment, we have been working on painting different areas of the house.  Each time we finish a room, we sit back and enjoy the rewards of all of our hard work.  As time passes, we walk into a room without a thought to the colors around us.

    Then, day before yesterday, I walked through our beautifully painted living room to our pantry.  I reached in to get something, bumped the brand new bottle of Ragu, and got nailed on the top of the foot.  I stood there a moment wondering whether or not I needed to call for help or just suffer for another couple of hours till my husband got home from work.  After a while, the pain stopped, I limped around for a while, and now, I’m back to normal.

    I know it seems like a stretch to compare these two concepts.  They are such a contrast to one another.  However weak the link, I have been pondering on this idea of how people just do not understand a feeling they have never had.  Before my husband and I painted our home, I had never painted, thus not understanding that particular feeling of accomplishment.  Before that Ragu bottle fell on my foot, I never understood how people feel like they want to throw up when they hurt themselves severely.  You just do not know till you feel it.

    Then the unexpected happens.  Like a sharpened pencil, you write those memories down in your mind, the feelings become dull just like that pencil.  They are still there, but they have lost the intensity because of time.

    I do have a point to all of this.  We go through this pain and triumph for a reason.  Maybe for many reasons.  I do believe, however, that part of the reason is to be able to not only help someone out, but to also really and truly comprehend the gravity of the situation.  And though it may not be fresh pain or paint, we can still relate.