Who Are These Special Moms?

As the mother of a son with special needs, I have often had people tell me that they think God gives special children to special moms.  While I realize that this sentiment is meant to be encouraging and kind, I also must say that I think it’s misguided.  A big reason I think this is because I know me.  I know me better than anyone else knows me, except God.  I know that I’m no more special than any other mom out there.  This isn’t fake humility, either.  It’s just the truth.

All moms need God’s grace for each day.  We who are His children need His grace for our own children in so many different ways.  How amazing is God’s grace, too!  He promises this undeserved favor to us over and over, greater grace for greater needs, along with His mercies that are new every morning.  He has all that I need.  He has all that any mom needs.  I asked God many times to give me grace for the challenges that I faced as a mom of all three of our children.

Having said all this, let me also say that I have a great respect for the moms that I know who are walking this life alongside their child or children with special needs.  My heart goes out to them, ones I know and ones I don’t know, as they face demands that they never dreamed they would encounter as a mother.

Aaron-mothers day 12May1985

So as Mother’s Day approaches, and we see the beautiful cards…….heart tugging commercials…….perfect mother and children photos…….and all the lovely images of motherhood through the years – let me give a “special” shout-out to all the “special” moms of special children.

Those dear Moms:

  • Who spend hours researching your child’s diagnosis rather than hours researching what sport for him to play.
  • Who pray for your child’s teacher to be understanding of meltdowns, bluntness, and a zillion other things that have nothing to do with her grasping of educational facts, and yet have everything to do with her ability to learn.
  • Who dread with a passion those IEP meetings.
  • Who dread having to once again explain your child in every new setting.
  • Who dread high school graduation because……then what?
  • Who try to ignore the stares from others in public places instead of basking in admiring glances.
  • Who are learning how to use your child’s feeding tube rather than planning his fun pizza party.
  • Who are searching for the best wheelchair rather than the best bicycle.
  • Who watch their child being marked for radiation rather than getting a cool tattoo.
  • Who are shopping with their daughter for a wig to cover her bald head due to chemo instead of shopping for the perfect new hair products.
  • Who are driving their older child everywhere because he can’t have a driver’s license due to seizures or other medical issues.
  • Who hurt because their child doesn’t have many, or any, friends.
  • Who are signing guardianship papers instead of college admittance papers.
  • Who are scouring the internet for the latest medical treatments instead of scouring for the best college scholarships.
  • Who know more drug names and side effects than they ever wanted to know.
  • Who spend far more time finding caregivers than finding cool vacation spots.
  • Who are adept at rearranging schedules due to unexpected medical issues.
  • Who lay in bed at night with the sound of your husband sleeping on one side, and your adult child breathing heavily in the baby monitor on the other side as you listen for seizures.
  • Who read your adult child the same book every single night of his life.
  • Who keep waterproof mattress pads on your child’s bed – your adult child.
  • Who have a hard time finishing a conversation with your husband without being interrupted over and over.
  • And who, for some, will find themselves looking at a gravestone on Mother’s Day instead of looking into the eyes of their child.

 

So to all of you amazing mothers of special needs children, I give you a huge high five!!  I hope you know that you are loved and that God does have special grace for you every day.

And may you, as my friend Atha would say, be established in your purpose……this God-given purpose……of raising one of His very special children.

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Some Special Heroes

 

Hero:  One endowed with great strength or ability; one that shows great courage.

 

Don’t quit reading.  I promise I’m not going to launch off into my opinion of Hollywood’s latest hero worship fiasco.  Besides, those of you who know me know what I think about it….and I certainly don’t need to add my voice to the many voices who have so adequately expressed my views.

 

I was going to write this blog anyway, someday, but now I have many reasons to do so.  And yes, a big reason is the messed up qualities that our culture is trying to cram down our throats…..not only the person this week but the people every day and every week that they try to convince us are worthy to be called heroes.

 

Another reason I want to write about some heroes I know is because of a conversation I had this morning with Barb, a manager at Paradigm and one of the kindest people I have ever known.  She told me of a business owner across the street from Paradigm, Aaron’s day group.  This man is not a nice neighbor to Paradigm.  One day, as special needs clients were outside on Paradigm property, he told the Paradigm staff that they could “take their circus somewhere else.”

 

Someone hold me back!  A circus?!  Excuse me??

 

That poor man.  He has no idea that he has heroes across the street from him every weekday.  I looked around inside Paradigm today and I saw amazing young adults.  Shauna gave me a huge smile from her wheelchair.  Jessica waved at me and gave me a beautiful smile.  Paul gave me a hug.

 

For years I have been surrounded by heroes…..by individuals who have extreme challenges, but display extreme strength as well.  How often do we “normal” people stop to think about what these special people face every day of their lives?

 

Each of them has a diagnosis, but their diagnosis does not define who they really are.  There is Epilepsy, Doose Syndrome, Autism, Prader Willi Syndrome, Spina Bifida, Muscular Dystropy, blood disorders, Downs Syndrome, Developmentally Delayed…..

 

But my friends are real people with real lives.  They were named by their parents, who love them so deeply.
Jennifer
Darien

 


Johannes

 

 

Elijah
Christoph
Alyssa
Aaron
Nicholas
Bethany
Rosa
Kaleb
They each face, or have faced, more physical challenges than I have ever seen in my own life.  Could I ever deal with even a fraction of what they handle, sometimes every day?
Seizures.

 

Taking medicines every day.

 

Facing the side effects of all the meds they take, which include being sleepy, dizzy, gaining weight, mood swings, organ damage, bone loss, etc.

 

Surgeries, some extreme.

 

Multiple doctor appointments.

 

Test, tests, and more tests.

Fear of infection.

 

This is just a very partial list of what they routinely encounter.  They pick themselves up, every day, and they live.  They live their lives to the fullest.  Would I be able to function after having one seizure, or would I just go to bed for the rest of the day?  How do some of them do it after having multiple seizures, sometimes daily multiple seizures?

 

But there is much more than just the physical part of their struggles.  What would it be like to face the social aspects of living life every day with a disability or a diagnosis that hindered you from living like your peers?

 

Having to go to special classes at school.

 

Having an IEP.

 

Not going to college.

 

Wanting to drive but not being able to get your license.

 

Having seizures in public.

 

Looking different, possibly.

 

Being bullied or teased.

 

Not having filters, so you say things that others don’t like or understand.

 

Not having close friends, or any friends at all. 

 

Not being invited to go out with your peers.

 

But our kids keep on going.  Somehow they manage to not only live, but to laugh and to grow and to thrive the best they can.  They jump over the challenges and push ahead, every single day.

 

I’ve watched Aaron on a seizure day as he still tries to smile, to get out of bed or off the couch, and to continue his day as best he can.  I’ve seen him go back to hard situations, like after he’s had a meltdown, and face his staff and friends again.  I’ve heard him say that he wished he could drive as he watched Andrew pull his truck into the driveway.  It’s sad to understand that he can’t even go out on his own to get a hamburger without depending on someone to take him.  I’ve been deeply touched as he watched his brother and sister grow and move on with life.  It broke my heart when he came home from his special needs school one day and said, “Mom, I noticed that all those kids there have problems.  What are my problems?”

 

And I want to say, “Aaron, you don’t have problems.  You have challenges, yes, but you have overcome them every day of your life in ways I’m not sure I could.  You are strong, and you are tough, and you are brave!”

 

You’re a HERO!!

 

And so are each of these wonderful young people that I’ve mentioned today.  They are each full of courage and strength to live their days as fully as they can.  They wouldn’t think of themselves as heroes, but I do!

And they don’t belong to a circus!!

 

They belong to a unique group of Super Heroes!  They should be on magazine covers and cereal boxes and talked about on the news!!

 

But they probably won’t be.  So look around you every day and find the true heroes among you.  Smile at them, love them, encourage their families, reach out to them when you can, and pray for them.

I am very thankful to know so many heroes….TRUE heroes that fit that definition perfectly.

And someday I’ll see two other heroes that have already gone to heaven.

 

Ben.

 

 
 
And Katy.

 

They live on in our hearts, and especially in the hearts of those who knew them best.

 

Don’t listen to silly Hollywood stories and look at ridiculous magazine covers to find a hero.

 

I guarantee there are many special heroes around you every day who could be your example of strength and courage.

 

I’m so blessed to live with one!  And to know many others!

 

 

 

 

Do You Know Shiphrah and Puah?

If you had asked me this past Saturday who Shiphrah and Puah are, I would have responded, “Uh………you know, as familiar as those names sound, I’m just not remembering Shiphrah and Puah right now.”  Perhaps some of you know of these two women, but I would have drawn a blank.  Not now, though.  Yesterday’s message at church from Exodus 1 reintroduced me to these two women, and I’m very thankful for that privilege.
For a little background, the people of Israel had traveled to Egypt under the rule of Joseph.  Jacob’s family grew and grew, filling the land of Egypt and becoming mighty.  All the original Israelites had died, including Jacob and Joseph, as well as the Pharaoh who knew and loved Joseph.  A new king arose over Egypt who did not know Joseph.  This king became fearful of the numbers of Israelites who lived in the land, thinking that if there was war then the Israelites would join with the enemy and overtake Egypt.  Therefore, this king made the Israelites become slaves……….but the more he afflicted the people of Israel, the more they multiplied and spread out.
Seeing that Plan A wasn’t working, this Pharaoh moved on to Plan B.  He ordered the Hebrew midwives to kill all the boy babies that were born, thinking that this barbaric form of birth control would limit the growth of the Israelites and thus eventually rid Egypt of the Jews.  This is where Shiphrah and Puah come in.  They were midwives……….probably two chief midwives.  Pharaoh instructed them to kill the boy babies that were born to the Israelite women but to keep the girl babies alive.  Simple enough, right?
But Pharaoh didn’t count on one complication.  Exodus 1:17 says, “BUT the midwives feared God…….”  This fear of God forced Shiphrah and Puah to make a decision.  Verse 17 continues, “……….and did not do as the King of Egypt had commanded them, but let the boys live.”  So sure enough, Pharaoh found out that Shiphrah and Puah were not killing baby Israelite boys………and he called these two midwives to come in for a little meeting.
I don’t know how Shiphrah and Puah felt at this point, but I imagine they were more than a little scared.  This is Pharaoh, who had no qualms about killing innocent baby boys and other Israelites as well.  From everything that was going on around him………….everything that he had initiated concerning the Jews…………..this Pharaoh seems more than a tad bit brutal.  I wish we knew all that was said at this appearance before Pharaoh.  I love thinking of the bravery of Shiphrah and Puah!  Yet it goes far beyond being brave.
Shiphrah and Puah were obedient to God, first and foremost.  I imagine that they feared Pharaoh………..but they feared God more.  This is the fear of God that involves reverence OF Him, and trust IN Him.  It’s the fear of God that Peter and the apostles had when they were given strict orders by the authorities not to teach about Jesus anymore………and Peter answered in Acts 5:29, “We must obey God rather than men.”
So back to Egypt.   I had never paid much attention to the fact that in verses 20 and 21, God lets us know that He was “good to the midwives.”  Verse 21 clearly says that “…….because the midwives feared God, that He established households for them.”  God blessed them and was good to them because of their obedience.
I really like Shiphrah and Puah.  I love the example they have set for me…………an example that is both profound and yet very simple.  Obedience to God comes first, in every single area of my life.  Obedience takes many different forms for each of us, but in whatever area that God is requiring obedience to Him, it’s best to obey.  Solomon said it so well in Ecclesiastes 8:12, “Although a sinner does evil a hundred times and may lengthen his life, still I know that it will be well for those who fear God – who fear Him openly.”
Shiphrah and Puah probably wondered if they would have their heads cut off……….or worse………..as they stood before the king and declared their loyalty to God.  I don’t know what my obedience to God will cost me, but obey I must.  I do know that God promises it will be well for me if I obey.  His blessings take various forms, and some we won’t see until eternity.  But we can take God at His word and know that it will be well for us when we fear Him, and fear Him openly.
Shiphrah and Puah are amazing!  Not because they were women, or because they stood up to mean old Pharaoh, or because they saved babies………all of which are important…….but they are amazing because they obeyed God above anyone and anything.  That’s the kind of amazing I want to be, every day, through good and bad.  Whatever the pressure……whatever the decision………whatever the pain……….whatever the outcome………

 

Fearing and obeying God!