Category Archives: Mikayla’s Story

Family by Diagnosis

When your child shares a diagnosis with other children you can’t help but identify with other parents. When you look at the faces of those other children you can’t help but see your own child’s face. You share the joy and excitement of their accomplishments and rejoice together over good news received. And you share in the grief and heartache when the news is the worst kind of news. You weep for children you’ve never met and pray for mamas too far away to wrap your arms around. 

A diagnosis grants you entry to a family you never knew existed. A different kind of family where all those children are my children and my child is not only mine but everyone else’s too. Each one different and unique. Each one loved fiercely by a community near and far. 

Most of the time, it’s really awesome to be part of that family. Our children are hilarious. They have the best smiles and the biggest hearts. In fact, many of us secretly believe we’re the lucky ones – that being a part of this family is a gift. But sometimes, when the bad news is coming from all sides – when the bad news is the worst kind of news – sometimes being part of this family is…well…sometimes we wish we didn’t have to be part of this family. Wish we didn’t know the grief. Wish we didn’t feel the pain. 

In those times, there is helplessness and heartache. There is why. Why is this happening? Why is there so much suffering? Why must it be our children who suffer? We ask God our why questions and in the midst of our questioning we are thankful that He can handle them. He loves us and knows we can’t understand. He wraps His peace around our hearts and tells us it’s ok to weep, to doubt, to be angry. He loves our babes even more than we do. 

Sometimes we get to witness a miracle. A divine intervention or healing. Sometimes we witness God calling our babes home long before we’re ready for them to go. And together this family rejoices and grieves. Together we carry on knowing that tomorrow or next year or ten years from now it may be my child this family prays over, my child receiving bad news. We celebrate each milestone, grieve each tragedy. Living through each up and each down of each child with one another all across the world. 

Because we have a secret. We know something no one else knows. We really are the lucky ones. We feel the sharp sting this diagnosis brings to each of our lives every single day. But we also feel the elation that comes from defeating it – even in the very small victories. And we know what it means to give our children to God, to trust Him with their lives, in a very real way. We know what His peace feels like. We know His strength – we depend on it for survival. 

Today is a day of questioning. A day of “why”. A day of grieving for children thousands of miles away. Today is a reminder of how precious time with my child really is, of how finite our lives may be. Today is a reminder to love, to be thankful, to be patient, to breathe deep and savor God’s peace. 

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This Parenting Gig

Being a parent has to be one of the hardest things any of us ever do. Children require an enormous amount of patience and love and money. They are loud and messy and demanding. And when your sweet darling angel says “Mommy” 763 times in the span of 9 minutes you feel like you’re going to lose your mind. (or so I’ve heard)

If that’s not enough, the knowledge that you are raising a person and are largely responsible for their mental, emotional and physical well-being is THE. MOST. TERRIFYING. THING. EVER.

I remember being about 8 months pregnant with Mikayla and thinking, “I can’t protect her out here.” In my sleep deprived, hormone imbalanced state I believed the illusion that I was in control – that as long as my child was in my womb I could keep her safe. Of course, this wasn’t true. Any number of things outside of my control could have threatened her. What I didn’t know then is that Mikayla would have Williams Syndrome. During the time when I believed I was in complete control, a few of her genes didn’t split correctly which resulted in a lifetime of challenges far outside my grasp of control.

I learned from this experience that we get it backwards. We think being a parent equates to ownership of our children. The belief that we are in control leads to a lot of stress and frustration and fear when life doesn’t go our way. In reality, we are stewards and not owners. Our children belong to God and are given to us to love, care for, teach, feed and answer whenever the precious dears ask a question, even if it’s 763 times every 9 minutes.

We only have our children for a short time to equip them to go out into the world and live as successful contributing members of society who love Jesus and strive to follow Him. They are not ours to fulfill our wishes or dreams.

This is not an easy thing to remember. My nature is to desire control and ownership. I forget that parenting is an act of worship and that my role is not to control every possible outcome of my child’s existence but to love her and teach her about God and pray that she will fall in love with Him. I don’t always do this well. But, when I do remember that she belongs to God and not to me, that God is in control and not me, a sense of peace and reassurance washes over my soul. I don’t have to be perfect. I don’t have to control everything. I don’t have to be anxious about her health. Because I know that God loves her and parents her far better than I ever could.

I may have an easier time remembering my lack of control than most parents. Because every time Mikayla and I go anywhere she insists on having an elaborate conversation with every single person we encounter. There are so many cashiers and store managers and bag boys that know my child by name and we talk to THEM ALL. EVERY TIME. If I were actually in control, this would never happen.

What aspects of parenting do you struggle to remember? How do your children remind you?

It’s Been Awhile

Hello.

It’s been awhile.

 

I took a break from blogging almost two years ago. Initially, I was going to be offline for about 3 months or so. And now it’s two years later…

I was going to say “I don’t really know why it’s taken me this long to get back to blogging” but then I remembered we started homeschooling. Homeschooling happened. Side note: homeschooling has been a great adventure. The psycho-planner part of my personality loves planning out curriculum and lessons and schedules. The not-so-patient part of my personality has found it difficult at times. Overall, it has been a great experience for both me and Mikayla. I truly believe it has been the best schooling option for her and I am so thankful for the privilege of staying home with her every day. Will we homeschool forever? Somedays feel like forever… as for future years, we’ll see when we get there.

Mikayla is doing well. We have started 1st grade this month. Yes, we started school in July. My friends have already informed me that I’m a horrible parent for starting school in July but don’t hate when we have a whole month off at Christmas! Mikayla’s health has been great over the past couple years. We have actually made it nearly two years with only one ear infection (which is definitely an improvement) and have received good reports from all her usual doctor visits this year.

I’m excited to get back into blogging from time to time. Writing helps me process thoughts and feelings and happenings. And I will share those writings with the world. Because it’s 2014 and I can. Also, when I say “the world” I mean “the three of you”.

So, friends, hopefully it will not be another two years before you hear from me.

 

Reader Question: What great adventures have you embarked on over the last couple years? Leave a comment to share.

Homemade Matching Card Game

A few weeks ago I started doing “preschool” with Mikayla.  It’s a bit of a shift for us in that it’s more involved and intentional than what we were doing but it’s not quite a full blown preschool program either. This fall we plan to either enroll her in a preschool somewhere or I will do a full blown preschool program at home – haven’t decided yet.

Anyway, I’ve been researching preschool stuff and putting together some sort of plan and “curriculum”. My friend introduced me to a blog by a homeschooling mom with TONS of homeschool tips and information and free, printable downloads. The blog is Confessions of a Homeschooler and I would recommend any homeschooling parent (or anyone thinking about homeschooling) check out her vast collection of information.

I was inspired by all of the printable curriculum available from Erica. One thing I wanted to get for Mikayla was a matching game. She plays one on my phone and loves it but I don’t want her nose in a screen all the time so I wanted a paper matching game. Sure you can buy them for about $8 but if I can make my own laundry detergent I can surely make my own matching game.

I already had thick cardstock so this was essentially free – other than the ink used to print the cards. I printed the back side of each page with an all-over design so that the cards would be the same on one side once I cut them out. Turned the pages over and ran them back through the printer to print the front of each card. And, since it was so fun and easy, I wanted to share them with you. Feel free to print and use them yourself or be adventurous and make your own! Also, if you have access to a laminator, it’d probably be a good idea to run these through it to make them more durable.

Color Matching Cards
Shape Matching Cards
Sky Matching Cards
Number Matching Cards (print this page twice so you have two of each card)
Alphabet Matching Cards (print this twice)
Animal Matching Cards (print this twice)

Matching Cards Back – Here’s what I used for the back of my cards. Another idea would be to use scrapbook paper that is printed on one side and white on the other.

Happy Matching!!

The Toddler Teacher

When Mikayla was first diagnosed with Williams Syndrome we had several well-meaning friends say things like “it’s just not fair” or “God gives special children to special people”. I understand the intent behind comments like these. And, I feel that saying something with a heart of love is better than saying nothing at all. Still, if they only knew how much I have learned – how much everyone could learn – from such a sweet, loving, happy person they would’ve said something different.

I fully believe God created Mikayla exactly the way He wanted her to be. I believe He gave her to me because I need to learn from her – not because I’m special in any way but because I’m judgmental and biased and impatient and unloving. Mikayla, like other children with Williams or any number of “disabilities”, was simply born with the gift of loving people. She loves anyone and everyone without bias or prejudice or judgement.

I’m pretty sure this is what God wants from all of us – to value people simply because He values them and not because of their accomplishments or appearance or wealth. I think He put Mikayla (and other children like her) into our lives to be an example – to show us how to be loving and kind and accepting to all people.

Not a mistake, not unfair, but a teacher and a blessing.

Leg Pictures

Mikayla likes to draw…mostly on herself or the furniture or the walls. We have to be vigilant about putting away all writing utensils – her pen radar is highly sensitive and she will locate any pen within reach the moment you turn your head.

The other day I left a pen out and walked away for literally seven seconds. When I turned back around she had written all over her legs, from ankles to pull-up. I asked her what she was doing and her proud and giddy response was, “leg pictures!”

I couldn’t scold her because I was laughing and it’s against the rules to discipline a child while laughing at whatever it is they did. (Pretty sure I read that somewhere.) Not to mention, I AM the one who left the pen laying out. I simply took the pen, thankful that she only wrote on surfaces that wash, and wondered to myself if someday she will come home with a tattoo and proudly exclaim, “Mom, guess what! I got a leg picture!”

Mikayla Update

Note: This post will be of great interest to anyone who is directly related to me. And, also perhaps to those with whom we live life on a daily basis. To anyone else who may be reading – every so often I post an update on Mikayla’s medical/physical progress. If you don’t know her story you can read it here.

It’s been a while since I’ve posted on Mikayla’s medical situation. Honestly, there’s just not much to report. Which is a good thing…I suppose…she’s doing very well. Medically, there are really no issues right now. It’s been a while since she’s even been to a doctor. (Although, when we went into the bank the other day she asked if we were seeing the doctor. Guess it looked like a waiting room.)

We see the eye doctor again at the end of February. Hopefully, she is old enough now and communicates well enough to actually participate in a vision test. Up till now the doctor has just looked at her eyes and sort of guessed at things – well, he probably wasn’t really guessing but she wasn’t able to communicate what she could or couldn’t see. He has always said she was a bit farsighted, or nearsighted, I can never remember. Either way, it wasn’t enough to cause her to need glasses and he hopes she’ll grow out of it. She seems to see just fine at home except when it’s time to clean up.

We will see the cardiologist in May. I’m very much looking forward to this appointment. A year and a half ago (June 2010) her cardiologist said the narrowing in her arteries was extremely mild if it still existed at all and that the two holes in her heart were closing on their own – a miracle, by the way. A year later (May 2011) at her appointment the doctor’s office had several people out sick or absent for other reasons and they were extremely short-handed. Because of this, the doc wasn’t able to do an echo which means he wasn’t able to actually look at her heart. Based on the EKG and on how her heart sounded when he listened to it, he said it sounded like a completely normal heart. Soooo…we hope that means the two holes have in fact completely closed on their own and that she will not need heart surgery to fix them.

We won’t see any of her other doctors for a while. She’s reached a point where she’s outgrown most issues and just needs to be monitored off and on. One thing that her doctors have all mentioned over the last year – “she definitely has plenty of energy.” Um, yep, no lethargy whatsoever. She goes from the moment she wakes up and runs to my bed and says, “Mommy, time to get up. Light on.” to the moment she unhappily climbs into bed with five or eight of her favorite stuffed animals.

Physically, she’s also doing well. She’s growing like crazy. I’m actually crossing my fingers that she doesn’t outgrow all her “winter clothes” before winter is over. If you see her looking like her mother doesn’t know how to dress her, just know I’m trying to make the clothes last as long as possible. Her muscle tone is low in comparison to other kids her age. Mostly that just means it takes her a little longer to do the same things. She runs and jumps and climbs non-stop. She skips and goes up and down stairs. Seeing her by herself you’d never know she had some weakness in her muscles but if she’s at a playground with a friend you can definitely see the difference. I don’t know that she’ll ever outgrow this – or catch up to her peers. Low muscle tone is something that will improve with age but she will probably always be weaker than her friends. I highly doubt that will slow her down much, though. She’ll figure out a way to do whatever it is she wants to do. Although, I’m sure she will always struggle when it comes time to clean up.

Developmentally, she is a little behind in some areas. Her speech is a bit delayed but she sees the awesomest speech therapist ever! She communicates better every day. She is very much a parrot and we’ve had to start watching what she’s watching on TV because whatever it is, she’ll repeat it. A cashier at Target yesterday said “hi honey” to her and today when she talked to Mike on the phone she said “hi honey”. She’s also quite funny. Sometimes I’m not sure if she just doesn’t realize what she’s saying or if she’s intentionally sarcastic – either way, I predict she will have her father’s sense of humor and quick wit.

People with Williams Syndrome typically follow the same pattern with their medical needs. The first year is excruciating (for the parents, not so much for the baby who cries constantly and doesn’t sleep). After the first year, life gets much easier. There are a few years of a “lull” where the Williams child is pretty much the same as every other toddler. With school will come a whole new set of challenges but for now life is easier.

Easier. Not easy. Life for Mikayla will never by typical – or what most people would consider “normal”. She will always have medical challenges, social challenges. But, she will always enjoy every moment. She will always love people – no seriously, all people. She will always teach me to be engaging and nonjudgmental with people I encounter. She will always smile.

PS – She never wears clothes. I put clothes on her and generally if we are in public she keeps them on but literally as soon as she gets out of the car, she undresses. I don’t know if she’s hot or just uncomfortable or just likes being naked but I hope she outgrows this phase before kindergarten.

Another Picture Update

I just wanted to share a few of my favorite Mikayla pictures from the last several weeks. She’s growing like crazy (and is super adorable) so I feel like I should share these with you…

Williams Syndrome Videos

Last week the Today Show ran a segment about Williams Syndrome. There are two videos from the MSNBC website that are great and I wanted to share them. If you want to read more, here’s the article.

Vodpod videos no longer available.

Vodpod videos no longer available.

Pay Attention

On Monday I wrote about a recent experience at the playground. Aside from being pushed down by another child, Mikayla had a blast. She LOVES running (not sure where she got that) so that’s mostly what she does at the playground. Here are some pictures of her actually playing:

You probably didn’t notice anything special about those pictures – other than they contain the most beautiful child in the world. As I was taking the pictures, however, I noticed something special. Something HUGE. The only picture I asked Mikayla to pose for was the first one. After that, she just kept looking at me and smiling this huge smile as if she was saying, “Is this worthy of a picture? Are you proud of what I’m doing right now? Do you see what I just accomplished?”

She would climb on something and then turn and look at me. I’d clap or wave or say good job and she’d move on to the next obstacle. And repeat. I had gone to the playground with my kindle thinking I’d let her play for about an hour while I read. After reading the same two sentences about 7 times I put the kindle away and got out the camera. She needed my attention. She needed me to take pictures. She needed to know that I thought she was amazing at sliding down the three-foot slide.

Kids notice. Even three-year olds notice how you spend your time and attention. Pay attention to what matters most.