Why Being A Special Needs Mom Isn't Something to Fear

I overheard two expectant mamas talking in a Chick-fil-A play area.  They sat together on one bench, oblivious to their older boys playing together, and they each were expecting a boy.  I watched my kids play with these soon to be big brothers.

These mamas chatted about due dates, pregnancy woes, and pediatricians.  And then the conversation took an unexpected turn.  One of the mamas confessed that she's constantly having fears that something will go wrong with the baby.  It even keeps her up at night.  What if something happened during the birth?  What if her child has special needs?

And the other mother joined in, that it's something she worries about too.  Then she added her own "what ifs?" but I tuned them out because my mind started whirling.

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Scriptures and Prayers for my Children

I've prayed more prayers for my boys than I could even count. Sometimes they're a quick, "Oh, God, give Kiddo focus during speech today," or "Heavenly Father, bring peace to Little Brother's heart right now," when he's in the middle of a temper tantrum.  Sometimes they are prayers about therapies to start or discontinue, or about good behavior and awesome results at an evaluation or a speech intensive.  Sometimes it's a quick "Help them come to know you Father."

I've also prayed desperate prayers.  Prayers for Little Brother's life, when at 17 weeks pregnant with him I needed to have my appendix removed pronto and the surgeon said so matter-of-factly, "of course there's a risk you will lose the fetus in surgery."  (Side note, I hate that term 'fetus'.  It's a baby folks.  In this case, my baby.  End side note).  Hubster and I, family and friends and members of our church prayed and prayed that God would spare us both.  And obviously, He did.  I call Little Brother "my little miracle."

I've prayed desperate prayers for healing.  We've brought Kiddo to the altar at church numerous times, had our pastors lay hands on his head and pray for his hearing, his speech, his complete and miraculous healing.  Hubster and I pray for both kiddos and their speech and their healing.  We have friends and family and members of our church praying for them too.

But a year or so ago, I started turning to Scripture to find passages to pray.  And a few of those are what I want to share here.

Dear Global Apraxia

Dear Global Apraxia,

When I first heard about you, I was reading a post on the Teach Me to Talk website, and I thought, "Hmm, I wonder if Kiddo has that?  I sure hope not, it sounds terrible."  I asked Kiddo's therapist when he was 17 or 18 months if she thought he had you.  She told me "No" just like that, and I was relieved.

A half year later, no new words or sounds, and it became harder to ignore.  I was fairly convinced now, but since no professional had put it into words, I could pretend you didn't exist.

And then, we moved and we had a new therapist, Ms. Blessing, and I asked her on our second visit. She confirmed it, and in a way I was relieved to know what was going on, though devastated that you were what was plaguing his development.  After she left I wept for about 20 minutes, and then decided to wipe off my tears, roll up my sleeves and get to work beating you.

Because that's what we're going to do.   You hear me apraxia?  We will beat you.

I've been mad at you before.  Not just mad, angry.  I've been frustrated with you daily.  I've been sad because of what you've done to my precious child.  No, not just sad, devastated.  I've wept more tears than I could count.  I've been so overwhelmed by all the areas we need to work on with Kiddo that I've felt paralyzed, not even knowing where to start or what to focus on.  I've been anxious about Kiddo, his progress, the therapies, our finances because of all the therapies.  So much anxiety it has affected my health, every aspect: physical, mental, spiritual and emotional. And apraxia, you are one expensive time consuming beast to beat.  I've been jealous of those kids who don't experience you, who can learn things so quickly and easily, and I've been jealous of those moms who can plan their lives around play dates and nap times, rather than around therapies and doctors appointments.  I'm exhausted because of you.  Tired of all the worry, the stress, the appointments, the bills, the calls to insurance and doctor's offices, the watching other kids do things so easily that Kiddo struggles with, the teaching of the same skills over and over and over and over again.  I've felt lonely on this journey.  And worst of all, I've doubted God's goodness because of you.  I've told God before how much I hate you, how I know God could heal Kiddo of you, and yet, here you still are.   But so is God, right here with me.  You may play a big role in our lives, but God's role is so much bigger and greater and more powerful.

Each and every day a new sound, a new word, a new phrase, a new skill shows that we are slowly but surely beating you.  So much victory, so much celebration in every inchstone on the way to the big milestone.

One day, you will be just something we mention in passing.  "Oh, Kiddo had global apraxia.  It took years of therapy to get him to talk, to jump, to walk up and down stairs alternating his feet, to hold his pencil in a normal grasp, but look at him thriving now."

I look forward to that day.  Better watch yourself apraxia.  Because not only will we overcome you, but we will look back and realize how much stronger you've made all of us.  We're already stronger than we would be without you in our lives.

Yep, you better watch yourself apraxia.  We are beating you.

A Hard Day with a Sweet Finish

Today was rough.  Both kiddos were more disobedient and whinier than usual.  Kiddo was not cooperating when I tried to work with him on his lesson, so I gave up.  I was tired and my patience was wearing thin with them.  The clinic where we go to OT and speech called and said they need an updated referral, as ours expires soon.  So thinking it'd be a five minute phone call like it usually is to get a referral faxed over, I gave the doctor's office a call.  This call took a whopping 37 minutes, with me being put on hold several times and the kiddos interrupting other times.

And I was worrying about Little Brother, about how he keeps sloooowly adding new words to his vocabulary (he must have 200-300) but doesn't combine them in phrases.  He should be doing that by now.  The magic number of words a child usually has before he starts combining them is 50 and we're well past that.  For example he can say 'more', and he can see 'please', but he won't say them together, even if I tell him too.  So I worried again that maybe I'm to be a mama of two kiddos with apraxia.  Double the speech therapy appointments, double the bills, double the heartache and hard work.

I was frustrated and worried and overwhelmed, so Hubster suggested we go out for lunch.  It sounded great, so we piled in the car, had a great lunch, ran a few errands, and then on our way home I got pulled over for going 5 miles over the speed limit (luckily the officer just gave me a warning).  I was mad as I drove home, making sure I followed the speed limit exactly, since the officer happened to follow me pretty much all the way home.  Mad not so much at the officer or the warning, but at how things in my life were going.  So, when we got home I plopped the kids in front of the TV, grabbed a few chocolates and my Bible and determined to spend time with God.  Question where He was in all of this and what He wanted me to learn from all this, and why He wasn't answering my most desperate prayers for my sons and their healing and their words to come quickly and effortlessly.

Little Brother decided it was the perfect opportunity to snuggle me.  I can't turn down Little Brother snuggles.  And then Kiddo wanted to show me something he had found.  And then Little Brother wanted a snack.  And then Kiddo wanted a drink.  And then Little Brother threw a toy at Kiddo.

And I yelled at them. Fear filled their faces and I instantly regretted everything I said. I snuggled my boys, told them I loved them, then sent them to watch TV.  Finally they did, but I was no longer in a seeking God kind of mood, though I desperately needed Him.

I went on Facebook.  A place I know I should avoid, because I'll read about all the cute things my friends' kids are saying and videos of the milestones they're making effortlessly, and instantly feel sad, but I wanted to do something that would make me feel normal, that would distract me from my angry and sad thoughts.

After 5 minutes of reading articles and random things my friends are doing, I came across this blog post posted on the apraxia support group page:  "To the Mamas of the Special Ones on the Hard Days".  It was a refreshing read and made me feel so much better.  So, not alone.  I felt encouraged to take a few minutes to myself guilt free before spending time playing with the boys.

And then I did play with them.  And I heard Kiddo say a new word "Oos!" (oops!)  I heard it several times throughout the evening, and it made me smile every time.  That new word, that grin when Kiddo said it for the first time, well it made my heart release the frustration and soak in the victory.

And while we were playing outside, Kiddo pointed to the sky.  "Ook!" he said.  I didn't look.  "Oh, yeah, an airplane."  "No Mama.  Hecopper".   I stared at him in surprise.  I've never heard him say helicopter before.  Jeez, that's a hard word to say, but Kiddo was trying it on his own without practicing it over and over again like we oftentimes have to do.  He came up with his own motor plan for it.  Victory!

And then, Little Brother said his newest word too.  I was kissing him all over his face and he was giggling so hard he couldn't catch his breath, and then he gasped and said "Sop!"  "Did you just say stop?" I asked him.  "Yeah," he said.  "Sop!"  I grinned.  A new word, I'll take it.

Or when my children say any new word.  :)

And then, bedtime rolled around.  After Kiddo was all snuggled in bed and we had read his book before bed, we prayed together.  Sometimes I do the praying, sometimes I do it fill in the blank style.  I decided to fill-in-the-blank it.  Me: "Thank you God for ____."  He said his name in response.  "Me," I corrected.  "And thank you God for _____."  "Eesus!"

I choked back tears as I told him, "Yes, thank you God for Jesus."  I've never had any indication that Kiddo understands anything relating to God, Jesus, Bible stories, except for identifying "baby Eesus" at Christmas time.  I've never prayed before using the words "Thank you God for Jesus."  It was his own spontaneous thought and it filled my heart with hope and joy.

We finished our prayers and I kissed that precious little guy goodnight and as I left his room it hit me: God had answered my angry prayers through the mouth of my apraxic child.  How amazing, how incredible is that?  Though things may be rough, I am so thankful that God sent me His son Jesus, to give me strength for all I need to do, to give me peace when I'm feeling overwhelmed, and to forgive my anger and frustration.  And just as I ache inside that my children are not where I want them to be developmentally, oh how much more God's heart must have ached when His son was nailed to a cross He did not deserve.

Yes, thank you God for Jesus.

Blessings at the Beach

Hubster and I took the kiddos to the beach a few weeks ago.  I admit, I was not super excited about it, as Kiddo is kind of anti-water.  As in, will freak out if water gets in his face, and will cling to you with a kung-fu grip if he's in more than a few inches of water.  Plus, Little Brother gets into everything and has a love for running off wherever his heart fancies, and so I was anticipating an exhausting trip for us.

It was not.  If anything, it was the most refreshing, blessed time Hubster and I have experienced in a while.  We have never seen Kiddo so excited or expressive about anything before.  We'd ask him, "Where are we going?" and he'd exclaim "Da bea!" and do what I call his happy dance.  Or we'd tell him we're going to the pool, and he'd exclaim "Da poo!" and do his made up moves for what he thought swimming looked like.  Never have we heard him so expressive, so vocal, so excited.  I've called him stoic for years.  Not anymore.

And that's just the beginning of the blessings folks.  The Kiddo LOVED the water!  He wanted to swim.  He wanted to go into the ocean and didn't want to get out.  He got water in his face, and though at the beginning of our trip he freaked out a little bit and demanded a "towa" (towel) we'd tell him "no, just wipe it off with your hand", and he would.  Towards the end of our trip, he would wipe it off without us telling him anything, or ignore the water in his face completely.  MAJOR VICTORY!!

He started our pool times by clinging tightly to one of us, or content to play on the top step or two, but slowly he got braver.  We let him float on a boat raft for a while, and he really enjoyed that.  We introduced a kickboard to him, which he liked, but we had to hold tightly to it since he doesn't have the core strength to stay on it without our support.  And we graduated to the swimmies on his arms, which he was so proud of, and by the last night of our beach vacation, was able to keep himself completely upright and (as you can see in the picture below, top right) content to not have Mommy and Daddy so close by.  Again, major victories. :)

And, as if that wasn't awesome enough, Kiddo started JUMPING into the water, trusting Daddy to catch him.  Yeah.  Pure awesomeness.

Little Brother had a lot of fun splashing in the water too, and he added a few new words, the most common being "airplane".  We celebrated his b-day at the beach (pics to come in another post), with my parents, who joined us for a few days, and it was a great time for all.

Swimming with Mommy and Grandma, flying kites with Grandpa and Daddy, and other beach fun.

Hubster and I just soaked in all the progress we saw in Kiddo.  Our hearts were filled with a joy we haven't experienced in a while, seeing the joy, the excitement, the fun the children were having.  It really felt like God was smiling on us, showing us His love for us, for our children, and how everything is going to be ok.  All the hard work we're doing, and will continue to do to get Kiddo talking and communicating and climbing and all that other important stuff, is paying off and we are seeing fruit.  Beautiful, sweet apples of gold.

Had to get a selfie with both my blessings. :)

I am so blessed.  Filled with hope for Kiddos' future.  In awe of God's awesomeness.  And excited that I can share it with you here on the blog.  I hope I never forget how awesome the week really was. :)

Kiddo's Prayer

Either Hubster or I pray with Kiddo before bed every night, but we've always taken the lead on the praying part, and then let Kiddo say Ah-eh! (Amen!) at the end.  But last night, I decided to do a fill-in-the-blank prayer.  See if he'd participate.  And I was so proud that he did.  This is how it went:

Mommy: What do you want to tell God thank you for?  Thank you for _____?
Kiddo:  Mommy.  (huge grin)
Mommy:  Good.  Thank you for ______?
Kiddo:  Daddy.  (another huge grin)
Mommy:  Thank you for ______?
Kiddo:  Baby.  (That's what he calls Little Brother).
Mommy:  Thank you for ______?
Kiddo: (points to his mouth)
Mommy:  Say it.  Thank you for _______?
Kiddo:  Tee!  (Teeth!)   Ah-eh!

I had no idea he was so appreciative of his pearly whites.

And here's a random picture of his latest craziness. Reason 1,001 why we should always have our bedroom door closed.