Birthdays, Milestones, and JS Conference

Within the past 1.5 months, Marcus turned 2, Audrey turned 4, and Mike turned 35 years old.  Needless to say, we had a lot of celebrating to do, and much to thank God for.  I’m glad that Marcus’ birthday kicked off the birthday season because through him, we’ve learned to not take birthdays for granted anymore.  Each day and year the Lord has given us with each other has been a precious and undeserved gift.  My own heart has welled up with gratefulness for this family that God has allowed me to be a part of.

By God’s grace, the kiddos are doing well.  As much as I’ve had to trust that Marcus is complete in Christ, I’m learning to trust that Audrey has all she needs in Christ as well.  I often wonder how all of Marcus’ “issues” will affect Audrey as she grows up.  I’ve asked myself if she will feel resentful or neglected with all the therapy and attention we have to give to Marcus.  The Lord has reminded me that Christ will supply all her needs just as he will supply all of Marcus’.  For now, it looks like she’s doing alright.

A particular blessing recently is the bond that seems to be growing between the kids.  They love to be together and to make each other laugh.  Audrey has a keen sense of Marcus’ needs throughout the day, and Marcus looks up to Audrey like no other.  He LOVES to tickle her, be tickled by her, and to kiss her goodnight.  This stuff melts my heart.  (sigh)  Even when they fight over toys, or when Marcus tries to bother her on purpose, I giggle inside.  After all, that’s what siblings are supposed to do, right?

We continue to be encouraged by new things that Marcus is doing.  Here are a few new ones.  Some of these have just appeared within the past few days:

Imitating / repeating words:
– He says “nah nah” everyday before naps and going to bed at night.
– He also has repeated mama, dada, and wawa (water) on command.
– When praying, we say “In Jesus’ name we pray…” and he’ll say “aaahh” (Amen)
– He’ll say “Ohhhhh” when sing “Oh, How I Love Jesus”

Learning new signs:
– Hungry, thirsty, book, daddy, diaper (he’ll sign these when we prompt him to)

Nodding and shaking his head for “yes” and “no”
(His nod for “yes” looks more like a body wave, but hey, we’ll take that!  I’m sure he’ll use it one day in his dance crew.)

Recognizing / pointing to shapes:
– Square, circle, triangle, rectangle, oval, heart, star
– He LOVES to do shape sorters, but recently he’s been bored with squares, circles, and triangles.  I think he wants to move onto trapezoids and parallelograms and then to do the quadratic equation.

Coloring / drawing:
– He can now hold a pen or crayon upright so that he can scribble on paper.

Climbing stairs:
– He can climb our whole flight of stairs with some help from behind…and a treat waiting for him at the top.

Walking in his walker:
– We are slowly fading away some of the support he used in his walker because he is getting stronger.  And we actually even turned it around so that he can kick a ball in front of him.
– He is using his walker more and more.  It’s been neat to see him soak in his environment and stop to explore and enjoy what he sees.

But what he enjoys MOST is playing his instruments.  He has learned to use his drumsticks now and will turn anything and everything into a drum. We also got him an acoustic guitar for his birthday which he wouldn’t let out of his sight for the first few weeks.  He probably would have slept with it if we let him.  So now, he’s got his acoustic guitar, his electric, his paddle drum, his bongos, his cymbals, his maracas, and his keyboard.  He’s training to be a one-man band.

Lovin’ his jam sessions with Daddy.

Lastly, we had the privilege of attending the Joubert Syndrome Foundation Conference last week in Cincinnati.  We probably experienced every single emotion while we were there.  Anxiousness, thankfulness, relief, burden, sadness, laughter, hope, heavy-heartedness, joy, you name it.  But what we came away with most was a great appreciation for belonging to such a special group of families.  I wish I could tell you all the things we admire about the parents we met, and how precous each of the kids were.  This amazingly rare syndrome brought us all together and it was so freeing to be surrounded by so many who knew exactly what we were going through and who have gone through so much more than we have for so many more years.  In a strange way, after settling back home, my heart started to grieve again.  But this time it wasn’t just for Marcus.  It was for all those families that we met.  We really miss them and hope to meet them again some time in the future.

Going to the conference was especially sweet for us because it was made possible by precious brothers and sisters from our church who gave to us so that we could go.  Last December was one of the darkest and most heart-wrenching times of this journey.  Marcus was diagnosed with Retinal Dystrophy and by that time, we were at the end of our rope and full of much anxiety, bitterness, and sadness in our hearts.  During that time, a dear friend organized a secret donation to our family so that we could attend the conference.  When we received the gift, the card said, “You are not alone.”  I can’t adequately explain to you how much that uplifted and encouraged our hearts.  God really used that powerful expression of love to show us that He would take care of us and provide grace to be able to endure hardship.  It was a true-life illustration of how Christ meets all our needs even though we don’t deserve it.

Here’s a little slideshow we made of our trip.  Enjoy!

Click to play this Smilebox slideshow: JS Conference
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