“The Lucky Few,” by Heather Avis

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Do you know that feeling when you find an author who has put your thoughts into actual words?  When you find that someone has taken the chaos of feelings and beliefs running through your head and has somehow turned them into clear, concise writings? I love that feeling.  It brings me clarity, validation and connection.

I experienced this over and over again while reading The Lucky Few, by Heather Avis. Heather is the adoptive mother of three children, two of which have Down Syndrome.  I first found Heather through her Instagram account @MacyMakesMyDay.  I admired how positively she wrote about Down Syndrome.  It wasn’t a sad thing that happened to her children or a burden to her family.  In fact, she describes her family as being some of the lucky few who get to experience life with Down Syndrome.  This felt like such a truth to me and it shifted how I viewed Thor’s diagnosis (which is different from Down Syndrome).  And her kids are freaking adorable…their lip syncing/dance jams will make your day!

Heather also does some public speaking and advocacy work for adoption and for the rights of people with different abilities.  I was so excited when her book came out and I purchased a copy right away.  I wanted to learn more about her personal story and about advocating for persons with different abilities.  What I didn’t expect was to read such a powerful testimony of God and how His best is often found in the places we don’t want to go to.

“Like every woman I’ve met, I wanted healthy children, because healthy seems easier; healthy seems normal; healthy seem nice.

“What I did not know then is that ease and normalcy and niceness are not as important to Jesus as obedience, perseverance, and sacrifice.  I didn’t know that easy and normal and nice would do little to build my character or make me a better and more complete human being.

“Somewhere off the rose-petal path where easy, normal, and nice bloom, true beauty lives in the muck.”

Now, let me say that I don’t believe parenting any child, even the healthiest, is all easy, nice and normal. I know it’s not.  It is still hard, challenging and character building.  The same principles still apply.  What if instead of dreading/fearing the hard parts of motherhood, we humbly accept them with gratitude?  What if we look for beauty and purpose in the discomfort?  If we did this, I think we would find more joy and beauty in our lives.  Rather than wallowing in the “muck,” we would be able to use those hard times as opportunities to grow and learn.

Soooooo much easier said than done, I know.  But there is a very important truth there that I thought was worth sharing!

And one more final quote from the book that I just love:

“Motherhood is often about scooping up your child and gladly taking the bad with the good because he or she is worth it.”

Thor is so worth everything I have had to give up or take on for him.  I say that without a moment of hesitation and without an ounce of regret.

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Brushing Teeth & Letting Go

Thor has been seeing a dentist who specializes in cleft palates for a couple of years now.  This week we went in for a check up and walked out with two more appointments to get cavities filled.  I am embarrassed to tell you guys how many…whew, FIVE! Five freaking cavities!  Talk about a #momfail and a tail spin into total #momguilt (and a super size diet coke).  But then I calmed down, put it in perspective and came up with a plan (with our dentist).

We really don’t have terrible oral habits over here, I swear.  We brush twice a day, Thor is a healthy eater, and he doesn’t drink anything during the night.   But we do have a couple things working against us. 1.) Genetics- Jerry’s teeth are more prone to cavities.  Our dentist also explained that kids who have feeding tubes for a long time tend to have dental issues.  There is nothing we can do about either of those.  2.)  Thor hates having his teeth brushed. He cries and bites down on the brush to keep me from really getting a good scrub.  I have a few ideas on how to improve this aspect:

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First, our dentist gave us a new toothbrush.  It is called a surround toothbrush.  It has three sides with soft bristles that surround the whole tooth, which should help us get more cleaning out of each brush.  The toothbrush we got was made by a company called Specialized Care Co.  Here is a link to it on Amazon.  I really do feel like it is helping to reach some of the harder spots and helping to get it done faster.  It is expensive for a toothbrush, but it is made really well, and besides, have you seen the cost of a cavity filling?  Yeah, if this brush helps it will be totally worth it.

ThBrush book copye next thing I did was pull out a couple of books that I used when we first started teaching Thor to brush his teeth.  It has been awhile since we last used them, so I figured I would try them again, since Thor is older now.  The first book is  Brush, Brush, Brush by Scholastic.  It is super simple and you can sing it to the tune of “Do Your Ears Hang Low.”  I use to read/sing it to Thor and we would practice brushing the pictures’ teeth. Then I would sing the song as I brushed Thor’s teeth.  (Thor is a totally music-orientated kid, so I have a song for just about everything.)

 

Yoon book copyThe next book is Do Crocs Kiss? by Sallina Yoon.  This is a really cute lift-the-flap book with a different animal on each page.  The flap is the animal’s mouth and when you lift it, it turns into an open mouth full of teeth.  When I read the book with Thor we used his toothbrush to practice brushing all the animals’ teeth.

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Letting Thor practice on books like this, or on his toys or even on Jerry and myself, help to turn it into something more fun.  I also believe it helps him understand and process what is happening in his own mouth, making it less scary.  Maybe that seems too dramatic, and for a lot of kids it is overkill.  But Thor has a unique history with his mouth.

Thor was intubated when he was first born, had feeding tubes down his nose and throat during the first four months of life, and has had two really invasive surgeries to correct his cleft lip and palate.  A lot of babies exposed to just one of those factors will have oral aversion, which is a partial or full refusal to allow objects or food into their mouths.  Thor certainly struggled with this, and I don’t blame him at all. After his cleft palate surgery he even refused his beloved pacifier (and sleep has never been the same, folks.)

Our therapists always stressed the importance of not forcing anything into Thor’s mouth, because that would only make his aversion worse.  This always made sense to me.  Our mouths are very personal, private spaces.  Can you imagine someone forcing something into your mouth that you didn’t want there?!?  It would be traumatic and a total violation of trust.  We had to let Thor have control of his mouth.  It took two years before he ate on his own, guys. Two really long, hard years.  Countless times offering food to have it pushed away.  Buying a gazzilion textured toys for him to chew on when he was interested.  Hundreds of hours spent, trying to make food fun and eating a positive, social experience.

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Now Thor is eating all on his own and his feeding tube, which was surgically placed into his stomach, was taken out this past October.  Hallelujah!  But I still feel that it is extremely important to respect his sensitivity.  Of course, it is also really important to keep his teeth healthy and clean.  I am going to try my very best to keep a balance between the two sides.  This means trying to keep brushing his teeth fun, patiently talking him through it, and respecting the fact that this is a hard thing for him.

After all that, I am going to let go.  The worry and the guilt of parenthood can build up so quickly.  It can drain the joy from the job and leave us feeling overwhelmed and unworthy of the calling.  I don’t want to feel like that, so I have learned to accept that I do not have total control.  I can do my very best to care for Thor, give him every therapy I can afford, feed him super-food smoothies every morning, and pray my heart out every night.  But in the end, his genetics, his diagnosis, and just plain old life and luck have their say in the matter, too.  So I have found peace in learning to do my best and then letting go, a principle that applies to even the small things, like brushing teeth.

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Tummy Time & the Tipping Point

When Thor was born he was very sick and very vulnerable.  He spent his first days fighting to just survive, and even months later his medical needs demanded a special amount of care.  I hated to watch Thor struggle or to hear him cry, even when it was over something simple like a diaper change that I knew was not hurting him.  We are biologically wired to respond to our baby’s cries and I have met many other mothers who express feelings that are similar to the ones I remember having.

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Thor’s first tummy time in therapy at Lurie Children’s Hospital, June 2014.

Our journey in therapy started while we were still in the hospital.   As soon as Thor was stable enough to be taken off his respirator, therapists began visiting him…that is how important it is for even sick babies to get started moving and working!  Even the gentle therapy Thor first received caused him to cry and protest.  Simply rolling him from one side to the other would totally overwhelm his little body.  And my instinct to scoop him up and save him was almost overpowering, but I soon learned a very important principle:

Frustration and challenges are okay.  In fact they are even necessary.  If we want to improve and get stronger we have to challenge ourselves.  Progress only comes with a certain amount of discomfort and frustration. This is a universal truth that applies to everyone…even babies and young children.

So let’s apply this to tummy time.  Tummy time is key to a baby gaining the back strength and coordination that is necessary for crawling, climbing and walking.  Even the simple act of laying on the stomach has been connected to improved digestion, neurological development, and sensory awareness.  If you have ever been to the pediatrician’s office or read a baby book, you know why tummy time is important.  And if you have any questions about how to do tummy time just do a quick google search and you will find lots of ideas.  (If people tell me they are interested, I can also do a post with different ideas on how we have done tummy time.)

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Thor in a modified tummy time position with a blanket rolled under his chest.

Even though I knew the importance of tummy time, I hated it!  Why?  Because Thor hated it and to hear him fuss and complain and cry was so stressful for me.  So, I learned how to overcome that anxiety and stress by learning to recognize my baby’s tipping point.  I had to learn that it is okay for a baby or a child to be frustrated.  It’s actually good and necessary.  But there is a difference between frustration and all-out crying and distress.  When a baby crosses that tipping point and goes from trying to work their way through a problem into hysterical crying, then the exercise is no longer productive. It has become a stressful and negative experience.  And therapy/work for a baby should be positive and fun!

If you learn to recognize your child’s tipping point you can relax knowing when they are just frustrated and you can help keep them from crossing over into a state of distress.  That puts you in a great position to understand and control the moment…a rare thing in motherhood!

Recently, I did a live video on Instagram Stories to try to illustrate this point, but let me try to illustrate it here, too.   A baby in tummy time who is grunting and whining while trying to lift her head to see a favorite toy will also show signs of excitement and satisfaction when she finally catches a glimpse or is able to reach out and touch the toy.  A baby who is in a frustrated state, can still be comforted by her mother singing a song or distracted by the pictures of a book.  However, if she becomes too tired or overwhelmed and starts crying so much that she cannot be distracted, then she has crossed over her tipping point.  She is no longer trying to solve the problem or even exercising the intended muscles.

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Tummy time on his scooter with his PTA, Miss Lisa. January 2017.

When your child does cross the tipping point (because they will at many points), resist the urge to run to their rescue.  Calmly help them out of their dilemma, talking them through it.  I learned this from one of Thor’s therapists who would calmly ask him “Oh, is it time to get up? Would you like some help?”  Then she would lift him up, asking him to help her push.  When he was up out off his tummy she would give him a little bit of time to try to soothe himself and then, if he was still upset, she would ask him “Do you want to go to mommy?”  She would hand him to me so I could soothe him.  He would also need to rest a little before going back into another exercise.  The key points are to stay calm, use it as an opportunity for them to learn how to help themselves and give them an opportunity to soothe themselves.

Initially, Thor’s tolerance for any challenging position was almost non-existant.  His tipping point would come hard and fast, and it took a long time to soothe him enough that he was ready to move on to anything else.  But week by week, he got stronger.  Purely through exposure and experience, he became able to tolerate more discomfort without crossing over his tipping point.  And we learned how to recognize signs that he was reaching “the point of no return.”  One of Thor’s tells is that he begins to rub his cheeks and eyes.  So when we would see those signs we would either give him a little more support to make the exercise easier or we would use a different distraction.  We always made sure to keep a close eye on him so we could pull him out of tummy time before he totally lost it.

Those actions of rubbing his eyes and cheeks have now become his way of soothing himself, which is a great skill!  I know when I see those signs that he is tired or stressed, but I have also learned where and when it is necessary to pull him out of the situation.  Now I can talk him through his struggles to help him find a solution.  He still does not like tummy time and his strength and tolerance has improved a lot.  I can’t say that I like it now either, but it no longer triggers feelings of anxiety and guilt.  We are both making progress!

So, take a deep breath, start listening closely, and you will learn to discern where your baby is truly at.  This principle applies to so much more than tummy time.  It can help you through the process of your child learning to fall asleep, feed themselves or figure out how to open a container of toys.  Find pride in them as you watch them struggle through their challenges, you will be amazed at what they can do!

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March 2017