club foot

Thoughts of a Mother of a Special Needs Adult

/ Anne (Grace is my Superhero) / 6 Comments

Ashlyn has been an adult for a year now.  I am not sure how I feel about it.  When she was little enough to be carried, her intellectual and physical disabilities were not a big deal.  I hoped that each year would bring new accomplishments and new abilities. I believed that someday her body would straighten and strengthen, that her brain would catch up, and that she could attend a normal class at school.

               I did everything I could to help these dreams come to pass with research, healthy living, and therapies.  We had some breakthroughs, but as she got older, the gap between Ashlyn and her “normal” peers widened.  You can read about our journey in, “An Answer for the Guilt of Motherhood.”

She developed a progressive club foot deformity and needed surgery to walk.  To read the entire story click here and to see the one-year update after surgery, click here.

               A brachiation ladder in the form of a walking track was a beacon of hope to me.  Ashlyn used it to walk upright on her own for most of her childhood.

I thought it would help her feet flatten and her back straighten, but they continued to get worse.  In 2018, Ashlyn had a spinal fusion surgery because her scoliosis had progressed.  She did wonderfully with the surgery and the results were amazing!

Again, I thought that the walking track would help straighten and strengthen her muscles. In 2021 we had to move the walking track out of our living room for a remodel. I wasn’t ready to give up the hope that walking track had given me; that Ashlyn would walk on her own someday, that she would even run!

We moved the walking track outside so Ashlyn could still use it.  She rarely did.  She never wanted to.  I felt guilty for not forcing her to do it as part of our daily routine, but the truth was, walking was becoming less and less beneficial to her.  Her feet had continued to turn after her surgery, and her braces hurt them if she walked too much.  Her toes pointed inward, and her knees rubbed together unnaturally. Her back was not as straight as initially after the spinal fusion, and she would habitually hunch over and lean to the left.

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11 days after surgery
2 1/2 years after surgery

I gave up hope that the walking track would help her walk.  Each passing year brought a slight increase in her disabilities.  She was gaining weight but not gaining muscle.  Her gait and her posture could no longer be corrected by outside forces.  Her mobility was so dysfunctional. It gave her a measure of independence: walking with a walker for short distances or crawling around the house.

She now reminds me of my mom who lives in assisted living and who won’t move an inch without her walker; except that Mom is in her golden years and Ashlyn is just starting her adult life!  If Ashlyn has such problems now, what will her body be like in 10 years, in 30 years?

I finally told Chris that he could take down the walking track and use the wood for other purposes.

I grieved that day.  I grieved the loss of my dream.  I grieved for my daughter who has not been healed. I grieved for her twisted, painful body. I grieved for her mind that understands some but not all.  I grieved for her past, all that could have been done differently that may have made a difference.  I grieved for her present.  I grieved for her future.

               In this season of mourning, there was a new beginning!

               It happened that the children’s playset broke at that same time.  Chris had an idea to fulfill another long-time dream of mine.  He and our sons took the wood and created a garden!

A garden!  I felt so loved.  New life!  Growing and thriving things!  I was amazed by how quickly everything grew in the untested soil of my backyard.

Problem after problem began to pop up, and each one sent me into a downward spiral of dismal imaginations.  First the delicate, pink climbing roses developed powdery mildew.  (I had discovered the roses on the side of the road, and I dug them up and replanted them in my garden.  I smiled to myself while I was doing it, because my Grammy had loved plants so much, she would dig them up all over the US and take them back to her home in Wisconsin.  She did have one of the prettiest yards in the city of Wausau!) I didn’t know what powdery mildew was at first, not until I had to cut the roses to the ground.  I worried that my inexperience would lead to the demise of the beautiful clematis plant given to me by a friend.  I was imagining a garden that was white, powdery, and dead.

Thankfully no other plant was affected by the blight, and I learned how to deal with it. Next came that snap peas that took turns becoming brown and shriveled.  I imagined it was bacterial wilt, and I because I didn’t pull them out immediately, my beautiful but somewhat wilted tomato plants had become infected and would be a complete loss.  Then I learned from my more experienced neighbor that the time for snap peas had passed.

The garden kept growing and the lettuce was wonderful!  Fresh salad from the garden felt like the most luxurious of pleasures.

What a tragedy that lettuce won’t grow all through the summer, but ready to take over in dominance were the tomatoes and cucumbers.  Nothing can compare to a homegrown tomato, and I ate some every day.

Only the cherry tomato plant produced well.  The other two plants grew lots of tomatoes but few that were good to eat.  I let them grow too wild and had a jungle by the end of summer.

We are a family of cucumber lovers, and the garden couldn’t produce them fast enough despite the abundance of seeds I had sown.  Perhaps I had too many plants too close together, or perhaps the soil wasn’t right.  They sure looked lovely though!

Soon, the leaves began to turn yellow and wilt.  I found the dreaded garden pest, the cucumber beetle, every time I inspected the leaves and flowers.  My neighbor had told me that I should kill them because they could carry bacterial wilt to the rest of the plants.  I imagined my garden languishing under their reign of terror.  Worse yet, I imagined my neighbor’s thriving garden being attacked by beetles that my plants had harbored.  I felt responsible for the carnage that was about to be unleashed…but never actually came. 

Again, I was overreacting.  Someone else told me that the yellow color was caused by the lantern flies, and if I sprayed the plants day and night with soap water, they would leave.  This did seem to help, but soon the cucumber plants were past their prime and I had to pull them out.  That left more sunshine for the cone flowers and evening primrose. They stopped producing blooms early in the season and never came back.  Perhaps next year I will not plant cucumber in front of them and they will be happier.

My pepper plants also had more sun, even though summer was fleeting, and they didn’t grow as large or colorful as they should have.  Still, I enjoyed every, last one of them. 

It was a successful first season, and I learned so many things that will make my garden better next year. Now it is frozen and barren, but hope is burning under the ground. 

Hope of spring, hope of new seeds, hope of new life in the next season.

What does all of this have to do with Ashlyn? I will not entertain my exaggerated, miserable thoughts of the future!  I will believe in God’s goodness! Hope is burning in my heart, under the surface.  Hope to sustain me through this day, this season.  My hope is Jesus.

Ashlyn is a senior this year.  I don’t know how to graduate her from home school, but it is going to happen!  She has been learning more each year, although she cannot read or do simple math.  She remembers so many facts that we have studied, yet she often refuses to give answers. She enjoys time with friends and family yet gets nervous in social situations.

She needed to get an ID when she turned 18.  She behaved very well at the DMV and could sign her own name!  I felt so proud!

Ashlyn’s braces that help her to stand and walk began rubbing on one of her ankle bones.  Finally, it was so painful that she couldn’t wear the braces anymore.  She had to crawl everywhere she wanted to go, which is what she prefers to do anyway.  I took her to a new foot doctor who was highly recommended. I was very underwhelmed with the experience.  After a brief look at the x-ray and a glance at her foot, he was ready to sign her up for another surgery (which is probably the only long-term option).

I am not ready to take her through another surgery!  We simply had new braces made and are hoping this will allow her to walk without pain.  She must always build up her endurance to new braces, but she can almost wear them fulltime now.

The doctor did give her a referral to Physical Medicine and Rehabilitation. The doctor there was wonderful, and I left the appointment with the stirrings of hope growing in my heart.  She did what every parent of a special needs child NEEDS a doctor to do.

  1. Listen with interest and compassion while we tell our child’s medical history and story.
  2. Approach our child with kindness and respect.
  3. Look at our child’s body as a whole unit, observing how each part effects every other part.
  4. Give us small, defined measures that we can take to improve the situation.

We left with some targeted exercises and some encouragement!

Someday Ashlyn’s body will be healed.  Someday she will be free.  Now she only sees in part, but someday she will perceive it all.  I don’t know when or how, but Ashlyn will have wholeness in her body, soul, and spirit.  Although her quirky habits and ways of speaking can be wearing on our nerves, and her disabilities can be shackles on our freedoms, I seek to value her as God does.  She is perceptive, caring, peaceful, and content (most of the time). She is a JOY!

I can hear Jesus saying in Luke 14:12-14, “When you put on a dinner, don’t invite friends, brothers, relatives, and rich neighbors! For they will return the invitation. Instead, invite the poor, the crippled, the lame, and the blind. Then at the resurrection of the godly, God will reward you for inviting those who can’t repay you.”

I catch glimpses of how precious Ashlyn is to Jesus. With His love, I try to love her well each day.  Each day I feel like I fail, but God rushes in! In the future when Ashlyn is whole, I can look into her knowing eyes and say, “I loved you the best that I was able.  And I trusted God with all the rest.”

Ashlyn Update: One Year after Surgery

/ Anne (Grace is my Superhero) / 3 Comments

Last year Ashlyn had a Posterior Medial Release done on her left foot and a Triple Arthrodesis on her right foot at Hershey Medical Center.  This was to correct a progressive club foot deformity that wasn’t present when she was a baby but by age 13 had taken her ability to walk.  I wrote about all the details in, “Prayer Warriors Needed”.  Thank you to everyone who prayed for her!!!  Dr. Sorenson was happy with the results.

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He had originally said she would be in the hospital for 3 days post-op.  I was prepared to stay with her and somehow position my very pregnant self on a reclining chair for three torturous nights.

Ashlyn was doing so well after the surgery that they allowed her to go home the SAME DAY!  What a relief!  With some strong pain meds, she slept fairly well.  The biggest hassle was that she was supposed to sleep on her back with her feet elevated.  She had never slept on her back in her life, and she was very grumpy about it.  Finally after several days, I called the doctor, and he said it would be fine for her to sleep on her stomach with her knees bent and feet up on pillows.

AHHHH!!  Peaceful nights once again.  She did wonderful during the day resting on the love seat.

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It was a little difficult for her to crawl around the house and use the toilet, but she did it with help from older siblings.  She healed quickly and her pain was not too bad.  We stopped using the medication before the prescription ran out.  The surgery and recovery were much easier than I had anticipated.  Her teachers at school gladly worked around her casts.

Right before school let out she graduated to big black boots.  She still wasn’t weight bearing, but was healing nicely.

Finally in August she was fitted for new orthotic braces that would allow her to walk.  Slowly but surely she began to stand and walk again!  Now she walks at school with a walker all the time, and walks at home on her walking track.

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She grew a lot in the year that she couldn’t walk.  Her scoliosis has increased to a 70% curvature which is very significant.  She is no longer able to totally straighten up, which makes walking hard.  Also her knees buckle inward.

She has also been riding her bike with a little help.  When she first received the bike some 4 or 5 years ago, she was terrified of it and would scream through most of her ride.  Now she loves it and asks to ride often!

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Her feet look much better than they did before.  As you can see, they still do not rest flat on the floor.

BEFORE                                                AFTER

 

Before
After

 

Before
After

Now she can stand without braces which she could not do before the surgery.

 

At least now she can fit into braces and normal shoes.  Big sister Areli got Ashlyn a pair of Nike wide Fly Ease sneakers that open with a zipper.  The easiest and nicest shoes she has ever had!

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I noticed after the surgery that Ashlyn’s toe next to her pinky toe on each foot was slightly shorter than it was before.  In fact, the toe on her left foot was drastically shorter.  On her follow up appointment I talked to the doctor about it.  Unfortunately, our beloved Dr. Sorenson had moved to Texas.  Another doctor took over for him.  This doctor had never seen Ashlyn before.  When I told him about her toe, he took a glance at it and said, “Oh yes, that it called ‘such-and-such long technical-term’ and she has had that since birth.”

“It is a lot shorter than it used to be,” I tried to explain.

“Oh no it isn’t, you just didn’t notice it before.” he promptly replied.

Well, my trust in this new doctor just plummeted to zero, and I thanked God that we had done this important surgery before Dr. Sorenson had made his move!

Prayer Warriors Needed for Ashlyn’s Foot Surgery

/ Anne (Grace is my Superhero) / 2 Comments

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Ashlyn is our special 14 year old.  She was a happy and healthy baby.  We didn’t know until she was 6 weeks old that she had a chromosomal abnormality.  We couldn’t get into a pediatric geneticist until she was 3 months old.  It was then that we learned that a piece of her 6th chromosome was missing.  This was very rare with less than 25 cases in the world similar to hers and none on record just like her.  I felt amazed that God would trust me with such a special little girl.  This also meant that no one knew what the outcomes would be for her.

“Wait and see,” is what they said.  Chris and I were sure that she would be almost normal.

We were wrong.

With each passing month, each passing year it became more and more clear how wrong we were.  I asked God for wisdom.  I read What to do with Your Brain Injured Child by Glenn Doman and it became my guide.

I let Ashlyn lay on her belly all the time.  It seemed like forever until she lifted her head, but she did it!  I made a crawling track for her and eventually she started to scoot!  That is, after many excruciating months in a brace to fix a right dislocated hip.  Still, that right side didn’t seem quite right.  She would drag that leg behind her while using the left leg to move forward across the floor.

300717_240310076004371_2823406_n  It took many years and a trip to the Family Hope Center to get Ashlyn to start the cross-pattern crawling.  Learning to climb up the stairs is what did it for her.  I was overjoyed!  I was ecstatic!  I didn’t care how long she crawled.  I knew she would get up and walk eventually.

                Again, I was wrong.

She didn’t get up and bear weight on her feet.  Slowly, ever so slowly, a mysterious and invisible force inside of her body began to pull her feet inward, the right more than the left.  The legs began to become internally rotated on the hip sockets, the right more that the left.  I didn’t notice and neither did all the doctors and specialists that she went to.

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Finally we recognized a progressive club foot deformity. We employed many different types of therapies and braces which allowed her to stand independently for the first time when she was almost 9 years old and take 11 steps by herself by age 10.

We built her a walking track and she worked up to over a hundred trips a day!  She could walk independently around the house.

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However, that invisible force kept on pulling, robbing her of all the progress she had made.  Now the only option left is surgery.  I hate the thought of surgery.  The pain.  The 8-12 weeks of recovery and non-weight being.  The bulky and difficult casts.  The unknown outcome.  The scar tissue and possible pain and arthritis later in life.  I asked God for wisdom and I figured that we had to give Ashlyn the chance to walk.

No surgery would mean no walking.

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I decided to get two opinions on Ashlyn’s case.  The first with Dr. Sorenson at Hershey Bone and Joint Institute and the second with Dr. Herzenberg at the Rubin Institute for Advanced Orthopedics in Maryland.  We saw Dr. Sorensen first.  I like him so much!  He recommended a Posterior Medial Release for the left foot and a Talectomy for the right foot (removing of the talus bone.)  He had gotten a medial release when he was 12 years old and it has been great for him.  He thought that Ashlyn would be able to walk just fine!  I was so encouraged and left his office with hope.

I don’t ever remember leaving a doctor’s office with so much hope!

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I researched the two doctors online and my heart sank.  Dr. Herzenber had around 30 years more experience that Dr. Sorenson.  I didn’t want to travel all the way to Maryland to see him, but I felt like I would be a horrible mother if I didn’t.

Thankfully Chris came with me on the day of the appointment.  The drive was long.  The wait in the office was even longer – 2 ½ hours in the room!  Dr. Herzenberg sure knew his stuff!  He said he had done many talecomies over the years but came to realize that a triple arthrodesis produced better results.  A telectomy didn’t leave a joint at all, just scar tissue between two bones that didn’t fit together.  This was not good for a major weight bearing part of the body.  A triple arthrodesis would fuse three smaller joints but reform the talus bone into a working joint.

                I left that visit feeling like this surgery would be totally impossible!

I had to give Ashlyn the best surgeon and the best option, but I could never drive back and forth to Baltimore time and time again for pre and post-op visits.  I could never stay away from my family for the days that she would be in the hospital.

I decided to talk all of this over with Dr. Sorenson.  I didn’t know how he would react.  Some doctors bristle when you question their authority and opinion.  I prayed and prayed.  When I told him that I had taken Ashlyn to see Dr. Herzenberg for a second opinion he said, “Oh really!  He is wonderful.  I actually went to see him for a second opinion when I needed knee surgery.”

I showed him the report of Ashlyn’s appointment and Dr. Herzenberg’s recommendations.  He sat down and read the entire report, WORD FOR WORD!  I never expected that!  It was clear that he admired this other doctor greatly.

When he had finished, he said, “I see his point with the triple arthrodesis.”  He examined Ashlyn’s feet again and declared, “Yes, I think that would really work!  Yes, I agree.  I could do the surgery here for you or you could go see Dr. Herzenberg.  I wouldn’t be offended at all.”

I told him that I would much rather do the procedure here in Hershey with him as the doctor.  We talked about all the details; four weeks of casting prior to surgery to stretch the muscles as much as possible, three days in the hospital, 4-6 weeks in castes, 4-6 weeks in special boots.

“I am so glad you went for a second opinion,” he said at the end of the appointment.

                I was overjoyed!  I liked this doctor and the office much more than the Baltimore option, but I never dreamed that it would work out so well!  I thanked God over and over for this humble and wonderful Dr. Sorenson.  I prayed that God would make him brilliant beyond his own abilities!

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As I thought about writing this article in hopes of raising a prayer army for Ashlyn, I realized something.  I wasn’t really expecting this surgery to work, to actually give Ashlyn the ability to walk.  I was doing it because to not do it would seem like neglect.  But my expectations were of pain and suffering for Ashlyn, myself, and the entire family; not of a breakthrough. There were two reasons for my dismal outlook.

  1. There were other issues that made walking difficult, her hips and the 50% curvature of her spine that would not be addressed in this surgery.
  2. Everytime we had followed instructions that were supposed to help Ashlyn’s feet, it failed to do so. Doctors, therapist, and The Family Hope Center had prescribed 8 different therapies or equipement to use and here Ashlyn is…a 14 year old who can’t walk.

God has been coaxing me away from my expectations rooted in the past.  He is bringing me into faith.

Faith that the future could hold more healing and more promise than I can see right now.

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I am also asking Him for miraculous healing since I know that He is the great Physician and that He would do a perfect job with no pain or scar tissue!  I am taking Ashlyn to a healing room this Saturday and hope to take her To Randy Clark’s healing service on Good Friday.

Ashlyn goes for her first casting on March 21st.  Her second casting is April 4th.  Her surgery will be on April 19th at Hershey Med Center.  Could you please pray for God’s amazing healing to be displayed and for peace and comfort for Ashlyn and the rest of the family as well!  I am not sure how I am going to deal with showers and potty-time with Ashlyn in two casts, unable to stand or walk at all.  Pray for God’s wisdom and grace!  Thank you for standing with us and expecting wonderful things!

Am I a True Believer?

/ Anne (Grace is my Superhero) / 1 Comment

I had just struggled through the door of the orthodontist with my daughter.  Ashlyn is almost a teenager and in dire need of braces on her teeth.  Doing orthodontic work on a child who is mentally three is difficult enough.  Then there is her club foot deformity.  She can walk with braces on her feet, but she is very awkward.  Sometimes she almost pulls me down while trying to steady herself.  We took seats right inside the door.  I was feeling a bit self-conscious, expecting people to be staring at me and my special needs daughter.

I found myself in the middle of a conversation between two women.  Both were talking about how terrible their knees were.  One of the women was in her 40s and had just gotten cortisone shots in each knee which helped considerably.  The other women was in her 50s and she told about having trouble with her left knee since she was 24.  Back then, since she had some cartilage damage, the doctors decided to do surgery to remove all the cartilage.

“It has just been bone on bone ever since then.  It is awful, but I won’t let them cut me open again, no matter how bad it gets,” she said with passion.

“God could give her new cartilage,” I thought to myself. “Areli’s mission’s team in Australia has been seeing healings.  Why not here?”

I felt compelled to ask her if I could pray for her.  Suddenly I had another thought that stopped me in my tracks.

“You are sitting here with a hip that gives you trouble.  You have had prayer so many times and it is not better.  What makes you think that you can pray for this woman?  You are sitting right next to your daughter who is obviously in need of healing herself.  She is evidence that God doesn’t always answer your prayers.  It would be better for you to just keep your mouth shut than look like a fool.”

These thoughts all flashed through my mind in the span of a second, but they seemed reasonable to me, and I stayed quiet.  Yet I thought about it for the next few days.  When I shared this all with Chris, he said, “You know that was the devil.”

I hadn’t realized it, but now that I write it out, it sounds just like that liar!  Why do I fall for it almost every time?  Over the next few days as I was driving my children around town, I kept encountering God through the Word of Promise New Testament on CD, The Book of Mark.

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Jesus said to the father, “You said, ‘If you can!’ All things are possible for him who believes.” Immediately the father cried out, “I do believe! Help me to believe more!”

Jesus healed the boy despite the father’s doubts.

“Jesus, please heal my daughter despite all of MY doubts.  How can I obtain this healing for her that seems so mysteriously hidden and out of reach?” I prayed.

                Jesus answered “Have faith in God, I tell you the truth. You can say to this mountain, fall into the sea.’  And if you have no doubts in your mind and believe that the thing you say will happen, then God will do it for you.  So I tell you to ask for things in prayer.  And if you believe that you have received those things, then they will be yours.”

“And those who believe will be able to do these things as proof: They will use my name to force demons out of people.  They will speak in languages they never learned.  They will pick up snakes without being hurt.  And they will drink poison without being hurt.  They will touch the sick, and the sick will be healed.”

                “Wow,” I thought to myself, “I don’t think I am a believer in the way Jesus meant for me to be, because I don’t have much of that evidence in my life.  Am I even really a true believer? How can I increase my faith?”

I asked myself those questions all week long.  Finally an answer came in a most beautiful way.  The sermon on Sunday was being preached by the pastor of Christ Community Church, Dave Hess.  He spoke directly to my questioning heart, as though God had instructed him to do so. You can listen to the entire sermon on LCMI.TV.

He was talking about finding what was pleasing to the Lord.  He said that God loved it when we joined Him on His adventures, taking risks and seizing opportunities.  Our mission (found in Eph 5:8) is to take full advantage of everyday, to make the most of the time (Kairos time – a moment of opportunity that won’t last long).  When we see a chance to step out and show God’s love, fear comes from the enemy who is trying to keep us from taking an opportunity that he wanted to use.

Rev 12:12 says that a generation will arise that will make Satan furious because he has run out of Kairos time, which just means that he is getting ticked off because the opportunities that he used to take advantage of are now being overtaken by the people of God.

Then Dave shared about when he first started trying to get words of knowledge for people outside of the church in an effort to bring them healing.  He floundered around awkwardly and made many mistakes.

“You will make mistakes”, he said, “But it is worth every risk and mistake because God can use our most stupid moments and make something redemptive.”

Then he read a declaration over all of us that answered the cry of my heart for more faith.

You will live as a child with his Father, flooded with His revelation light.

You will learn to choose what is beautiful to the Lord.

His supernatural fruit will be seen in you – His goodness, His righteousness, and His truth.

You will live with true wisdom having discernment to fully understand His will.

You will take full advantage of every day, every Kairos moment, spending your life for His purposes.

You are going to maximize the opportunities that He brings to you.

I think I am going to write these out and post them on my bathroom mirror.  I can read them and build my spiritual muscles by adding faith to every word!

An Answer for the Guilt of Motherhood

/ Anne (Grace is my Superhero) / 1 Comment

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I think most mothers feel some level of guilt every single day.  I know that I do.  I have heard it said that guilt is just part of the job description.  Should it be? Surely God doesn’t intend for us to carry this heavy load.  Wouldn’t we be much better mothers if we were free from guilt?

But I have so many opportunities to feel remorse!

When my third grader can’t read. (I am a horrible homeschool teacher!)

When my baby wakes up and I can’t calm him. (Surely I should understand a baby’s needs by this time!)

When I yell at my eight year old and he hides in the linen closet and cries. (I am so mean.)

When my teenager yells at ME for outlawing the indiscriminate consumption of sugar. (I am so unreasonable and extreme.)

When my oldest daughter is stressed out because of the amount of house work she has to do. (I should be doing more of the work myself.)

When my special needs girl is crying because I am forcing her to do therapy (what kind of monster am I?)

When my two year old screams so the entire grocery store can hear. (I have failed at disciplining him and instilling a sweet and joyful personality.)

I have realized that all moms have times like these.  So if we are all universally dealing with the guilt of our motherhood failures, THERE MUST BE AN ANSWER!!!!

Let me take you on a journey of extreme guilt and perhaps you will recognize your own journey.  I have a daughter who was born after a more difficult birth requiring Pitocin.  I wrote all about it in my article,  “Birth Story, Part 3.” She looked perfect and beautiful to me, but the hospital staff was convinced that there was something wrong with her.  She had unusual facial features and two toes on each foot were partially webbed.  They continued to “find” more and more abnormalities in her internal organs that could have had serious consequences.  Yet in just two days, she went home with me; a healthy, happy and totally normal baby!

Or so I thought…until I received a call when Ashlyn was 6 weeks old. The chromosome analyses revealed that she was missing a piece of her 6th chromosome.  No one had ever heard of such a thing and no one knew what this might mean.

Chris and I were convinced that our daughter would be just fine.  She could grow up without physical or mental handicaps because God would show us exactly what to do.  I read and researched and read and researched some more.  Other children like her had been able to maintain higher than average intelligence when put on an intensive therapy program developed by the Institute for the Achievement of Human Potential.  I opted to enroll Ashlyn in a similar program at the Family Hope Center. 

It required taking Ashlyn to the center every six months for an evaluation and to learn the home treatment plan.  Each trip would cost $5,000.  We weren’t able to take her until she was three or four years old.  I felt terrible about losing those valuable first years, even though I tried to institute the therapies at home that I had taught myself by reading their books.  We were able to raise and save the money to go to the Family Hope Center a total of three times in the 12 years of her life.  Each time the Family Hope Center infused me with great ideas and many wonderful therapies.

But there was a problem.  How could I possibly accomplish 6 hours of therapy with Ashlyn each day?  I found it a struggle to devote even two hours to her with all the needs of my other children, the house, and my husband.  Many times Ashlyn would be very uncooperative or sick, and we got nothing accomplished at all.  I watched the years pass by and her developmental delays became more and more pronounced.  The gap between her actual age and her neurological age grew wider and wider.

I took some comfort in the fact that all the crawling around on the floor she was doing was organizing her brain, and that someday she would eventually walk.  When that day came, her intelligence would be much higher because of the abundance of cross pattern crawling she had done.

What I didn’t know was that she was developing a progressive club foot deformity.  Perhaps it was because of her chromosomes, perhaps it was because of the lack of weight bearing on her feet, perhaps it was because of the poor position of her legs and feet while crawling.  Her large shoes created a crawling form never taken by a normal baby.  The handicap crept up on me and all of her healthcare providers until…her muscles and bones formed abnormally.

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She became unable to stand up or walk normally and may never be able to.

I felt like this, along with all of her other physical and emotional issues, were my fault.  Whenever I looked at her twisted and painful feet, I would feel deep sorrow and crushing guilt.  God had given her to me, and surely he had given me the tools to help her, but I had failed.  Failed not just in a little thing but in something that will greatly impact the quality of her life…her entire life.

Everyone who saw Ashlyn would always comment on how well she was doing, how much progress she was making, and what an amazing job I was doing.

But I never believed them.

Chris was always saying that Ashlyn WAS doing so well because of all the time I spent with her and all the good things I have done with her.  Without my intervention, he said, she would still be lying like a blob on the floor.

But I never believed him.

I continued to blame myself for her every deficiency.  Therapy was a chore, and Ashlyn was very often unhappy.  How happy could you be when the sight of you reminded your mother of her guilt?

OK, this is an extreme case of guilt, but I am sure all of you mothers (and fathers) out there can relate to some degree.  Does my guilt sound reasonable and rational to you?  Have I been a horrible mother?  Does God want me to carry this burden?

Nooooooooooooooooo!!!!!!

And he doesn’t want you to carry it either!

So let’s clear up a few things, mothers and fathers out there.  I am going to tell you some truth, and I want to open up your ears and hearts and BELIEVE ME!

When something goes wrong…it is not your fault!

When your child is not perfect…it is not your fault!

When the world around you is not perfect…it is not your fault!

When you are not perfect…well, that may be your fault, but it is ok!

God, in his infinite wisdom, knew that you would not be perfect, yet he gave you that child anyway.  He knew that you were the very best parent for that child.

You cannot save your child from their sin, their bad habits, or their circumstances.

You cannot heal your child; not their bodies or their souls or their spirits.

You cannot mold them and shape them into the person you think they should be.

ONLY GOD CAN DO THAT!

Sometimes God does those things THROUGH you in his time and his way and you may be totally unaware that he is doing it.  The closer we are to God, the more our minds are filled with his wisdom, the more attuned we are to his voice, the more he can flow through us to our children.

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The vague feeling of failure that most of us moms carry around is not from God!  The thought that if we were better parents our children wouldn’t be so….whatever it is that they are…doesn’t come from God.  It comes from the Enemy of our souls.  He knows that we are the perfect parent for our child and that God is using us in amazing ways.  He wants to make us ineffective in this most important calling.

It is true that sometimes we do things wrong and we need to ask forgiveness from God and our children.  If we are listening to the Holy Spirit, he will show us when these times occur.  He will convict us in a very specific way and give us hope that there is forgiveness and healing through him.

Here is an example:

Condemnation from the Enemy: If you were smarter, more organized, and more loving, your daughter would have walked years ago.

Conviction from the Holy Spirit: When Ashlyn was crying during her walking therapy today, you continued to push her.  You should have slowed down, looked her in the eyes, and talked to her gently.  You could have showed her that you saw and acknowledged her pain.  You could have investigated the specific location of her pain and asked me for wisdom as to whether she was just whining out of childish self-pity, or whether she had a real injury.

Condemnation must be answered with the truth.  Conviction must be answered with saying you are sorry and changing your behavior.

What is the truth?  You can find it in the pages of your Bible.  You can find it in the eyes of your Savior.  You can find it in the voice of your Father.  In his presence there is fullness of joy.  Joy because in his presence he tells you how beloved you are.  He shows you how in control he is, and how your little mistakes can’t derail his plan.  I have found that conviction is a rather small part of what the Father does.  The large part is lavishing his praises and love and encouragement on us!  Being in his presence makes me a much better mother than guilt and self-criticism ever did.  I wrote about how I try to get into his presence during a hectic mommy day in my article, “Grumpy Mommy Morning.”

Have you ever had this experience in worship?  Your heart is bursting with love for God.  Your gratitude is so deep that you can’t express it in words.  You have so many things to thank God for that you are glad you have an eternity, because that is how long it will take! You wish you could do something worthy of your wonderful God; singing, dancing, painting a beautiful picture, writing a 300 page masterpiece…yet all you can do is just stand there and let the overwhelming joy wash over you.  Wouldn’t it be awesome to feel that way all the time?  To mother our children out of that kind of joy?  Someday, maybe we will.

Have you ever thought that maybe God feels that way about you?  That being with you brings him overflowing joy that will last forever.  That he is so thankful for you and your life!

Blows your mind!!!  That’s what happens when you start listening to God’s voice.  He blows your mind with a new perspective that sends the guilt and shame packing.

Once I was sitting on my sofa, miserable with morning sickness and feeling like an awful mom.  God broke into my despair and said to me, “Thank you!  Thank you for being available to carry this child.  Without you, I couldn’t have brought this child of destiny into the world.”

THAT is the truth.

You may feel very imperfect.  You may be sure that you are messing up your sweet innocent child, and that they will need inner healing as a result of your poor parenting techniques.  But without you, they would never have been born.  They would have never had the chance to experience life, love, laughter, and sorrow.  They would never get to see the sights of this earth or heard the sounds.  They would never have gotten the chance to choose right from wrong.  They would never have the opportunity to try and fail and try again.  They would have never had the opportunity to be messed up and then healed!

So thank you mom!  Let me say a big “thank you” to you from God, your child, and the world!  Thank you for giving your child life.  Thank you for doing your best.  Your best is a wondrous reality full of deeply textured experiences.  It is not all sunshine and roses, but even the chance to experience sadness and suffering is a gift.  Thank you mom for that gift.

Did you know that God uses motherhood as a picture of abundant prosperity?  Is 66:10-12 compares the prosperity of Jerusalem to nursing and being satisfied at a mother’s breast and drinking deeply in her overflowing abundance.  Then verses 12-13 says, “I will extend prosperity to her like a river, and the wealth of the nations like an overflowing stream; and you will nurse and be carried on her arm, and dandled on her knees.  As a mother comforts her child, so I will comfort you.”

God compares himself to a mother!  God is going to comfort us like a mother!  Ahhhh, what a wonderful, peaceful image that is.  Mothers – God is using you to show himself to your children.  Your nursing and cuddling and soothing is revealing to your child what God is like.  You may not do it 100% perfect all the time, but there you are, doing it and giving your child a frame of reference for the love of God!

This world is not perfect.  You may think you are doing a very poor job of protecting your child from the toxins in our food, the poisons on TV, and the bullies at school. Let me remind you that this world is not our home.  It is a hostile warzone, full of danger.  It is hard to see the warzone because it is disguised by the white picket fences and flower boxes of suburbia, but it is a warzone, nonetheless.  We are living here as missionaries, trying to show the love of God to those who will violently oppose us even as we love them.  We were created for a place much more beautiful and holy and perfect than this. But we are here because God has a wondrous plan.  To raise children in the muddy trenches of this harsh environment is difficult.

No, it is downright COUREGEOUS! 

Mother, you are a mighty and strong warrior!  If you and your family are splattered with grime, fight bravely on!  Your Champion has already won this war, and soon his victory will be evident to all.  He is able to keep your children safe.

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All of these pictures were taken on a trip to the Family Hope Center we took with Ashlyn in 2010. Here is an old cemetery seeming to encroach into the sacred boundary of a park for children. Yet joy and sorrow, life and death dwell together in surreal beauty. Joy that Ashlyn is alive and healthy. Sorrow because of the realization that all my best efforts cannot heal her.

And in the midst of this war zone, God gives us a little piece of heaven, our own paradise… if we can learn to abide in him and open our eyes to the beauty in the brokenness.

A few months ago I was talking with a woman whose sister was a teacher for 35 years.  She taught at an institution for severely handicapped and damaged children.  She told me that most of the children had been abandoned by their parents.  She would prepare classes for the children, because they were eligible for free education until the age of 21.  She would stand at the front of the class room and teach letters, numbers, days of the week, etc. to a room full of wheelchair bound children who couldn’t talk.  Some would never interact or show any evidence of learning anything at all.  She would try to organize fun activities and field trips for them since they rarely had visitors.  She would put on a parent’s nights to highlight what their children had been learning and usually, no parent came.

I marveled at the love and special grace this woman had to continually pour into these children and young adults with very little encouraging results.  It took me months of pondering this before I realized…this could have been Ashlyn.  If she had never had me as her mother or Chris as her father, if she had been taken care of by a collection of paid state workers, what would she be like right now?  Was Chris right in saying what he had said many times before?

“Without all that you have done for her, Anne, she would still be laying like a blob on the floor.”

Ashlyn is a unique treasure that God has given me.  And I am a gift to her; a loving mother who shows her how much God loves her.

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A new perspective sure does a lot.  In fact, that is the answer to the guilt of motherhood.  Get your eyes off of yourself and onto Jesus.

Why don’t you put on some worship music like David Leach Worship or Bethel Music and seek God for his perspective on your mothering career.  Let that guilt just walk out the door!

Special note to mothers who may have legitimate guilt over huge mistake that you have made in the past.  You may have killed your child, mistreated him badly, or abandoned him.  These are serious offenses, but not unforgivable.  Most of the major players in the Bible had grievous sins and were very bad parents!  Yet God forgave them and loved them and used them to bring untold numbers of people to himself.  Guilt is God’s mercy to bring you to him.  Seek God for that kind of forgiveness and transformation in your life.  Once you lay your guilt down at the cross, don’t ever let the Devil convince to pick it up again.  Jesus signed his name to your sin and died as the punishment for it.  It is finished!  You are loved and you have a future full of hope.