This morning we gathered our clan and headed out to church early. It was our week to volunteer, which means arriving early for the volunteer meeting. When Andrew and I serve on the same week, we bring out kids into the meeting with us, since neither of us can watch them outside of the meeting. As you would imagine, they create distractions, they whisper too loudly, basically unaware of “sitting quietly while the pastor speaks.” But we do our best to contain them through this brief meeting.

At the end of the volunteer meeting, we always circle up for prayer. We bring our children with us into the circle because they are an extension of our service, and to keep tabs on them. Sophie especially has a hard time being still and quiet for prayer. As we circled up, I shushed her, but our pastor’s wife, aware of Sophie’s journey, commented, “It’s just so good to hear her chattering.” And so I shared with her that today is Apraxia Awareness day, on top of being Mother’s Day, so it is an especially meaningful day for our family.

Two years ago, when Sophie was three, she was still completely unable to speak or even imitate sounds. Just after her third birthday, we took her to a private speech facility for evaluation, and she was diagnosed with Childhood Apraxia of Speech (CAS), a speech disability where the brain fails to coordinate the muscles of the mouth properly for speech. We were told at the time of her diagnosis, and as early as her second birthday actually, that she would require years of speech therapy if she ever were to speak. IF. That was such a devastating thing to hear spoken over our child. At that time we had no idea what Sophie’s journey to speech would look like. But we held on to God’s promises and his truth that nothing is too difficult for him, that he does all things well, and that he is indeed a good Father, no matter what Sophie’s future might hold.

Now five years old, Sophie is our little chatterbox. It is an inexpressible blessing to hear her chatter. She is a living testament to God’s goodness. Just as she showed each of those volunteers today how much she loves to chatter, she showed them how good God has been in her life. Apraxia is a difficult diagnosis, but it is not bigger than God.

So today I am especially thankful for the reminder of God’s goodness to our family, to me as a mother, and to Sophie, throughout her whole journey. Last year on Mother’s Day, Sophie painstakingly told me, “happy mother’s day” for the first time, and I cried tears of joy. A year later, I am greeted each day with her incessant chattering. It is a gift to be her mother (and Micah’s too).

Today, I am standing in faith with other mamas who have yet to hear precious words from their children who suffer from CAS. May they feel peace as they wait and may they never give up as they battle apraxia with their little ones.

Well, the day has finally arrived. It’s the first day of kindergarten registration, and I’m not going. I’m sitting on my couch in my lounge pants with my box of tissue, crying my eyes out. Ironically, I’m sure there are many other moms sitting on their couches this morning in their lounge pants crying their eyes out for the complete opposite reason — they’ve just registered their baby for kindergarten! It’s an emotional decision, no matter which choice mama makes.

When Andrew and I began this discussion process about kindergarten, we were in pretty different places, but as we spent time processing, praying, and talking with many people about our decision, we both had the same idea running through our minds when we finally sat down to discuss this last night: It will not do any harm to give her another year to grow and get ready. While, on the contrary, sending her too soon could set her up for struggle in her academic career. I love when God does this — brings two people to the same page in an important decision.

I have agonized over this decision. Being an educator myself has been both a blessing and a curse. School is, to me, about academics, because I teach high school. (Although in practice I do teach A LOT more than academics to my high schoolers!) But the general notion of school is that it has to do with your intelligence and your learning. And this is why I’ve struggled so — Sophie is completely ready academically for kindergarten. All of her teachers agree that she probably has more academic skills than some little ones who will start kindergarten this fall. Letters, sounds, shapes, colors, numbers and counting, she’s got it. So if she’s academically ready, why not send her??

If you’re new to Sophie’s Story, you may not know that she was born with a condition called hypotonia. It’s not a syndrome, but usually an indicator of a syndrome. In spite of much testing and many different types of doctors, we’ve never found a cause for her hypotonia. She has no known syndrome that we’ve looked at. But she does still have hypotonia. She will always have it. And it can be linked to just about every delay she has experienced.

Hypotonia is a condition of the muscles in which their tone is lower than a typical person’s muscles. I picture it like this: a typical muscle is like a tight, thick rubber band. It is strong and can hold more pressure than a long thin rubber band. Sophie’s muscles are more like those long thin rubber bands, or ones that have been stretched out and lost their tautness. It’s nothing to do with strength; it’s the physical structure of her muscles. When Sophie was a baby, hypotonia caused delays in her gross motor skills like sitting up, crawling, and walking. It also caused her delay in speech, because, even though we don’t realize it, there is great muscle involvement in our speech. Now we see it more in her fine motor development – handwriting, drawing, opening packages and using silverware, dressing and undressing, toileting needs, etc. In addition, because of her speech delay, we see some delays socially. Sophie didn’t learn a lot of social skills at the typical time because she was not able to speak. On top of that, she’s most definitely an introvert.

The educator in me revolts because I know that the purpose of Sophie’s IEP is to remove the barriers that could keep her from being successful academically. Her barriers are physical, and we could have accommodations in her IEP that would allow her to go to kindergarten and be successful. But, as I said before, Sophie will always have hypotonia, and we can never be certain when she’ll be able to master a given skill. If we send her to kindergarten too soon, while her IEP can help her succeed, we’re starting her course for the next 13 years, and thereby giving her less time to succeed at those lingering delays before they become more noticeable to other children. Please don’t think that’s shallow — the way Sophie’s peers perceive her will impact her development, and the way that she matches up to her peers will also effect her own self-image. We want to send her to school as able as possible. So while she is completely academically able, Andrew and I agree that she could only benefit from more time to catch up in some physical abilities, to grow more independent, and to continue growing socially.

Although I really do think this is the very best decision for Sophie, there is still sadness in it for me. I’m struggling to identify where that sadness is even coming from. I feel like I should just be so glad for such an awesome all-day program that she can do next year at preschool. I guess I’m coming back to the realization that acceptance is always a process, at every stage in the game of special needs. I struggle very much with people who misunderstand Sophie’s needs and think that she has mental impairments. I struggle knowing that others may assume she’s not going to kindergarten for intellectual reasons. (Hence my overly lengthy description of our reasons.) But no matter the sadness and the struggle for me, I choose to do what I think is best for Sophie. In my heart, I trust that God sees our year ahead and knows all the things about it that I cannot possibly know. We’ve committed our decision to him, and we’re trusting that he will bless Sophie’s life.

This morning my beautiful butterfly said these amazing words to me: “I’m good at talking.” To me, this sums up exactly how much she has changed in a year. Not only can she speak fairly well, with a huge vocabulary and complex thoughts, but she is confident in her ability. This is wonderful!

With her recent birthday I’ve already been very reflective on her past year. But we are also engaged in the process of trying to decide her placement for next school year, so my processing has been in overdrive, and I’ve had many conversations with people who know Sophie well and care about her future deeply. So many beautiful realizations emerging!

Sophie hasn’t had an incredibly academic year, which caused me some concern initially when pondering her placement for next year, but as I’ve reflected, I’ve realized the many other areas she’s grown which are equally essential for her future success.

* She’s substantially more toilet trained than she was even six months ago. Although we still have occasional accidents, we’ve said farewell to pull-ups!
* Her fine motor coordination has increased in many ways — from scissors and glue and crafts to dressing and undressing.
* Socially she has exploded with confidence. Even though she still often struggles to converse with peers, she’s aware of what should be said and done in social situations. And she grows more and more comfortable relating to people outside her immediate circle. The more I talk with her educators, the more I hear how important the social aspect of development is for success in school.
* And of course, her speech has exploded continuously since she began to speak 18 months ago. (Was that really just 18 months ago?!) Her vocabulary is just so big, and her sentences have become more and more complex.

So many wonderful gains! I’m so proud of my girl!

So now we are in the difficult place of deciding where to send her for school next year. We have two options, if you’re curious.

*  We can send her back to preschool to an all day class that is only for 5 year olds who need a little more time before kindergarten. There are no brand new three year olds in this class (nor even four year olds), so the teacher is able to accomplish a lot more academically in the day. Plus, the day is longer, allowing more time for learning. She would be remaining in the program we have loved for the past two years, but in a class more appropriate for her age and more challenging for her as well.

*  Or, we can send her on to kindergarten in the general ed classroom in our school district. This school is a block and a half from our house, which is fantastic. But wow! kindergarten! Yikes! I had all but ruled this one out as we began the discussion of where Sophie should go, but some of her educators do feel that she is up to the transition.

The weight of this decision feels huge! There are pros and cons to both choices. And I’m trying to keep in mind that both would be good choices — not one right and one wrong choice. (And of course there’s the emotions of pregnancy clouding my rational thought, which helps nothing!!) We meet with her “team” of teachers next week to get their input on the best placement for Sophie (how amazing is it that she has a team of almost 10 people who are concerned about her future placement and invested in her growth?!). I hope this meeting will give us insights that will help us make this difficult choice. Above all, we really appreciate your prayers as we make this decision.

Standing on Jeremiah 29:11 “‘For I know the plans I have for you,’ declares the Lord. ‘ Plans to prosper you and not to harm you. Plans to give you a hope and a future.'”

And James 1:5 “If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault.”

We know that God will lead us and help us to make the best decision for our sweet Sophie girl! I’ll keep you posted on the decision……..

Today is my sweet Sophie’s 5th birthday! For her birthday this year, Sophie’s grandparents gave her a butterfly themed birthday gift, from a craft to a sweet twirly dress. Her grandma commented, “A beautiful butterfly… she has come out of her chrysalis this year.” I was struck by such a beautiful and perfect symbol for Sophie’s year. Although many days I have faced frustrations and discouragement with her, in reflecting on her year as a whole, I can see so clearly that her journey this past year has been beautiful.

When she turned 4, Sophie’s speech had begun exploding, but mostly at home. She was very shy around everyone else. Over this year, we have seen her emerge from her shell, gaining confidence to speak to others outside our home, and learning sass and spunk in her speech. Speaking fully in complex sentences now, some of Sophie’s favorite things to say these days include “I know what I’m doing, Mommy,” and “Don’t tell me what to do, Micah,” as well as “I’m just joking!” When I called her the “birthday girl” recently, she replied, “No, I’m not the birthday girl. I’m the birthday lady!” Spunky and sassy to be sure!

This Sunday as we came into church, Sophie saw her best little buddy, Isabella. She ran up and greeted her with a hug and said, “Hi, friend.” A year ago, she was only beginning to emerge from her shell; she would have been too shy for such a greeting. Our friends and family were lucky to get a wave a year ago, but now we see moments like this everyday.

This tiny gift which graced our lives 5 years ago has taught me so much. My mother often says that a woman’s true education begins when she becomes a mother. In many ways this is true for me. My journey with Sophie has developed in me a grit, a determination, a courage that I didn’t possess before her. I have stared bad news in the face and chosen to trust God anyways. I have faced discouragement and fear but kept walking forward in faith. I have watched my sweet girl show more determination and perseverance than many adults I know. As Sophie turns 5, we still face discouragement, bad news, fears, but we have also seen our beautiful butterfly emerging from her chrysalis. It has been breathtaking watching our sweet butterfly emerge and show the world her beautiful colors this year.