First of all, the Lord led us (by the prodding of loving friends) to connect with other parents of kids with Joubert Syndrome. We were very hesitant at first for a variety of reasons, but we thank God for what has turned out to be a tremendous blessing. We have joined an online family of parents who are going through the same things as us in caring for a child with this rare condition. By God's grace, everyone has been very encouraging and their stories have touched our hearts deeply. We've found many examples of joy, contentment, perseverance, love for others, love for their children, and an unswerving love for Christ despite deep pain. God knew exactly what would encourage and comfort us and we are so thankful. It's also been great to hear of older kids with JS who are doing well and overcoming great difficulty with a fighting spirit.
This month has been the start of a new phase of Marcus' therapy. His OT sessions are no longer at home, but at the center, where he can take advantage of more equipment. We're grateful that it is close to home, and that so far, he's been very cooperative with everything the therapist has him doing. Another praise is that Audrey is still excited as ever to go with Marcus to his therapy sessions and play with all the equipment as well. By the end of the hour, they're both sweating.
Here's an example of one of the things he does during therapy.
Secondly, the kids also got to get their pictures taken by Sohee. She didn't know it at the time, but she was ministering to me SO much by taking photos of Marcus. I knew that it would be a little tricky taking him to a studio, since he can't really sit up unassisted yet. I dreaded having to explain to the photographer and potentially see him fall and cry...which would have made for a very unhappy and stressful picture experience. But Sohee was so skilled, so patient, and she really captured the kids so beautifully. Audrey looked like such a little lady and Marcus looked so strong. It was really a delight and we're thankful for Sohee's talent and love.
Seeing my sister run around is the funniest thing in the world!
Thirdly, we had the extreme privilege of attending the Worship God Conference with Dan & Minna and Frank & Sherie. The elders graciously allowed us to go and not only that, they sacrificially cared for our kids for almost a week! We really had a spiritual retreat while we were there. It was so sweet to worship with undistracted hearts and fellowship together. Personally for us, what we came away with (besides the musical stuff) was a greater desire to love God more, love others more, and cultivate greater humility in our hearts. Words can't really describe what a huge treat it was for us.
Below: Frank & Mike admiring the indoor gym.
Dan & Minna enjoying some Sovereign Grace coffee without their 4 kids.
Fourthly, we celebrated 6 years of marriage this month. Thinking back on our wedding day, I was so happy, but a little oblivious to life and all that life would throw at us. I underestimated God's discipline of us and how He could use trials to sharpen us and reveal the depths of our sin and our ultimate need for Christ. We're thankful that along the way, He has led to green pastures and still waters, restoring our soul. It's eye-opening that He does all this for His name's sake. As long as He is with us with His rod and staff, we have nothing to fear. This past month has really been an example of Psalm 23 in action for us...how loving and gracious He is.
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