Tuesday, May 13, 2014

Apraxia is....

My Dearest Kiddo,

Today, on Apraxia Awareness Day, I want to share not the medical definition of apraxia, or the recommendations for overcoming apraxia, but rather, I want to share what apraxia is for me personally.  This is the most vulnerable I have ever been with anyone about this, but there's no need to keep it hidden inside.  One day, I know you'll be able to tell me what apraxia is to you.  I look forward to that day.  I'll probably cry as you tell me, just as I cried as I wrote parts of this letter.  But the tears are there because I love you so very much and I want what is best for you, today and always.  And so, without further ado, what apraxia is to me:

Apraxia is:

Worry.  What will your future look like?  What will school be like for you?  Will you experience the apraxia to such a degree that it defines who you are?  Will it make you limit yourself?  Will you be bullied because of it?  Were you aware of what those kids were saying about you at the playground?  What if you got lost, how will people who find you know who you are so they can bring you back to me?  Should we try a gluten-free diet?  Should we try a new supplement?  Should we increase your occupational therapy?  Should we increase your speech therapy?  Should we go to that ridiculously expensive apraxia speech intensive half-way across the country?  Is there a new therapy we should try?  Should I be spending more time teaching you than I do?  The list goes on and on.  Sometimes it keeps me up at night.  Sometimes it keeps me from relaxing while I read my Bible or worship at church.  It hits most often when I see you interacting with your peers, kids who are able to do so naturally what we've been working on for months/years.

Research. All the apraxia moms I come across say basically the same thing.  After they grieved when they heard the diagnosis, they did lots of research.  And I think it's because it's what you have to do to help your child.  Not a lot of people, doctors included, know about apraxia and the things that come with it.  So I've had to become an expert in it.  I've logged hours into learning more about apraxia, sensory processing disorder, motor disorders, hypotonia, verbal behavior, hyperlexia, hearing impairment, nutritional supplements, IEP meetings, alternate therapies, and the list goes on.  Yet I love learning more about it, it's become almost like an obsession to me that I have to limit.  I want to understand how your mind and body functions so that I can help you the best way I can.

Jealousy.  I love you to pieces Kiddo, I adore you for who you are, but a mother can't help but see other children your age and younger doing things effortlessly that you've worked months or years learning how to do.  I can't help reading the funny things my friends' children are saying on Facebook and wishing I had something funny you said to put on there too.  I watch other kids playing on the playground effortlessly, their mothers able to sit and watch, while I help you climb up the ladder and watch you carefully to make sure you don't step off those platform thingies that you are unaware of.  I get jealous of those moms who can go to all the play dates because they don't have to plan around appointments.  I get jealous when I hear mothers proudly tell about how young their child was when they met such and such a milestone that you and I worked our butt off to get to or are still working toward.  I get jealous when I hear other mothers complain about how concerned they are that their children won't eat their vegetables or drink their milk or whatever their concern is and I want to get up and leave because I wish that was the biggest concern I had about you.  (For the record, you don't eat a single vegetable or drink any milk, but see number one above to see where that fits on the scale of what concerns me).  I'm working on the whole jealousy/comparison thing, and I've gotten a lot better, but sometimes it's still a struggle.  I think all mothers do it because we love our children so fiercely, we want them to be successful, to enjoy life, and we use other children to measure how we as mothers and our children are doing.

Exhaustion.  I'll do anything for you Kiddo, but honestly I'm tired of running from one therapy appointment to the next.  Tired of doctor appointment after doctor appointment that rarely seems to bring the answers I wanted.  Tired of fighting with our insurance company (another for the record: I have our insurance numbers memorized as well as the whole "press 1 for English" menu.  And no, I do not want to take a survey).  Tired of teaching you the same things over and over and over and over again.  I'm tired of trying to figure out what it is you want all the time, because you can't tell me.  I'm tired of the worry and feeling guilty and jealous.    Mostly, I'm tired of seeing you get further and further behind your peers.  I'm tired of seeing you try and try and still struggle.  I'm tired of seeing your frustration.  I'm tired.

But apraxia is also:

Victory.  I cried when you took your first steps at 19 months.  Not just like a few tears.  Nope, I wept, and I praised God, I was so happy and so proud to see you take those first steps.  Now, I'm sure many parents have cried when they saw their children take their first steps too.  But because I knew how hard it was for you, how much physical therapy it took you to get there, it was that much more special.  That much more meaningful.  That much more joyful.  It's worth the effort, the frustration, the therapy appointments, to see you grow and thrive my son.  Every word, every accomplishment is a victory.  A victory to treasure, to take joy and pride in.

Strength.  Not just for you, who have spent your entire life in doctor's offices and therapy appointments, who works hard with your therapists, who sits still when nurses draw more blood, who sits quietly during hearing tests, who works to communicate the only way you know how.  But it has grown strength in me and Daddy as well.  We have grown as a couple as we fight for you together.  We have grown closer to God, trusting He has you in the palm of His hands and that He will give us the strength to do all that we need to do for you and our family.  I also have grown in ways I couldn't imagine.  Me, who used to avoid phone calls at all costs, now will get on the phone with insurance, or billing, or with a clinic to ask questions without a second thought, to fight for you. I have become a fierce mama bear, protecting my cub.  I have become stronger, and I know overcoming apraxia will help you be stronger too, to appreciate the benefits of hard work and perseverance.

Hope.  I've come across many other special needs mamas in our journey to overcome apraxia.  And some of them do not have the ability to say their children can overcome their disorder/disability.  But yours, Kiddo, can be overcome.  It will take lots of work.  Lots of frustration and I'm sure a lot more tears.  But you will be able to jump and pedal your bicycle, and skip, and catch a ball one day.  You will be able to dress yourself and put on your own shoes.  And most importantly, you will be able to talk.  You will be able to express yourself, to share your heart and your ideas with the world.  You will still have struggles, but you will be able to care for yourself, to thrive, to love God with your whole heart and your whole soul and your whole body.

Faith.   I think a parent-to-be may consider having a child with special needs a possibility, but that thought gets pushed out of your mind as you dream big for your child. When you find out your child does have special needs, it's devastating.  There's a grieving process before you can accept that this is the precious child God has given you and you must protect and help him/her with everything you have.  But becoming such a parent has molded me into a stronger woman, a stronger parent, a stronger Christian.  I have had to lean on God in ways I never have before.  I have prayed prayers I never could have prayed before.  I have learned to trust God in new ways.  I will never stop praying for you to be healed and/or for miraculous progress until it happens or until we have beaten apraxia.   But I also trust that God has a plan in all this.  Not something I would have admitted a year or so ago.  I believe that God does have a plan to "prosper you, and not to harm you, plans to give you hope and a future" (Jeremiah 29:11).  I may get frustrated that it's not happening yet, but I believe that it will be so.  That you and I are going to have an amazing testimony to share because we have struggled through apraxia with God's help and strength.  God is so good, my son, and I trust Him.  I pray that you will learn to as well.

Love.  You are loved, my son.  By friends and family who support us, who celebrate in your victories and share in our struggles, who watch Little Brother while I take you to appointments or therapies or a speech intensive because they love you so fiercely.  You are loved by other special needs and apraxia parents, who know the journey and celebrate the victories and share in the struggles all too well.  You are loved by your therapists, who always have such nice things to say about you, who work hard with you.  It has been an honor to meet such people, that I can call friends and who love you too.  They say it takes a village to raise a child, and you have a whole village full of people who love you and support you.
And of course, Daddy and I love love love you so much Kiddo, that we'll do anything for you.  We talk together about what we can do to help you, and we grin and celebrate each of your victories together.  We'll travel halfway across the country to get you a week of therapy with the best of the best apraxia experts, no matter the cost.  We'll give up our hobbies without a second thought just to give you the time you need, the therapies you need, the love you need.  Our love for you and Little Brother is so deep, I can't even put it into words.  You, my son, teach me so much and make me so proud.  You are a blessing, my pride and joy, my little hero.  I love you just as you are.  You are God's gift to us and I'm so proud you are mine.  I love you!!

Love always and forever,
Your Mama Bear

Happy Apraxia Awareness Day!!


  1. Beautiful! I know it's hard to lay your heart bare, but it helps us to know how deep your struggle and heartache is. Kiddo is amazing and we love him just as he is. We can't wait until the day he can tell us all he is thinking and feeling. You and hubster are doing an absolutely amazing job. God knew what he was doing when He gave Kiddo to the best possible parents and the fiercest of Mama Bears. Love and prayers always.

  2. I'm just now catching up on this post and wow! Beautifully written! I can relate because they are all the things I have dealt with myself. Although we are past the apraxia, I still struggle with the best route to take for Jake's allergies. I always end up in the same place - praying until I find peace or guidance for the next path to take. I hope the ear tubes are helping your little guy. I'm sure that will significantly help his speech. Best of luck to ya'll! :)