In Everything, Grace.

On Monday I had the privilege of speaking with a beautiful, Christlike couple who has a 25-year-old son with 5p- Syndrome. Friends from college gave me their contact information and encouraged me to reach out to their aunt and uncle if I wanted to speak with someone who is further down this road we walk with Ellie. What a blessing this conversation was to my heart! Their stories, reflections, and prayers were evidence of deep faith and joy that can only come from Jesus. A few takeaways remain in my mind.

Just talkin' about our FIVE month old!

One of my first questions for them involved the idea of ministry. Who better to ask than a pastor and his wife how they make time for other people when caring for their son (and other children) is so intensive? Lately I have felt like my capacity is so limited and caring for Ellie (or working on medical appointments, Medicaid phone calls, etc.) is about all I can do in a day, every day. This couple shared that perhaps life for me will look less like choosing a ministry or outreach and letting ministry choose me. I might not be able to swing an every Wednesday at 3pm type of commitment, but I can look for ways to bless those who come into my home to provide therapy for Ellie or remember that others are watching our lives as we seek to parent her in a way that glorifies the Lord. I was reminded that I will likely need to redefine some terms and expectations of myself. As I reflect on this truth, I recognize the need to humbly accept what the Lord has given me to do and resist the temptation to cram in other tasks I think I should be doing. Faithfulness does not mean doing it all. It does mean giving my all to what the Lord has entrusted to me.

Another piece of wisdom shared was to "build Team Ellie." What this means is inviting others into her care continually and living into the reality that it takes a village to raise a child. Even teaching someone simple exercises we are doing through speech therapy, for instance, will mean little bits of time here and there where Ellie is exposed to different people and being challenged in a good way while I have a few minutes to work on dinner or something of that nature. People will surely phase in and out of that kind of role regularly, but I believe that will be a blessing and teaching opportunity to everyone involved. I look forward to seeing the Lord teach others through Ellie and show His grace to her through them as well. Those who have already expressed an interest in learning how they can help care for her have blessed Chris and I tremendously. We were created for community, and I can't wait to watch Ellie's community develop over the years!

So much love for her Daddy!

The theme and truth I most needed to hear is so simple yet still so difficult for my works-based brain to grasp:

In everything, grace.

When the feedings are long and hardly productive... grace.

When Ellie wakes up every hour throughout the night... grace.

When both Pennsylvania and Indiana Medicaid has denied medical assistance due to mistakes on their end... and they're impossible to reach... grace.

When grief strikes out of nowhere and I don't know how to be with God when I feel angry with my circumstances... grace.

[God] has saved us and called us to a holy life—not because of anything we have done but because of his own purpose and grace. This grace was given us in Christ Jesus before the beginning of time, but it has now been revealed through the appearing of our Savior, Christ Jesus, who has destroyed death and has brought life and immortality to light through the gospel. 2 Timothy 1:9-10

I am so relieved that God's grace has set me free from the pressure to save, validate, or self-perfect myself or my daughter by my own works. This could only be true because of Christ's death and resurrection - HIS work of salvation for His purposes. Because of this grace, we can pursue the holy life we are called to yet are free from striving in our own strength. In everything, God's grace is sufficient for those who call upon His name in childlike dependence on Him. In everything, grace.

Since moving to Pittsburgh, we have taken note of God's grace in many situations. We have made a good bit of headway already in establishing healthcare providers for Ellie. First we met with Medical Genetics, and they were helpful in providing referrals to all of the specialists she needs to see. It was also a relief to hear that even though she has fallen off of the "normal" growth charts, it is fair and right to chart her progress on the 5p- Growth Charts instead. Our first visit at the pediatrician offered similar assurance.

We have lots of appointments scheduled for the coming weeks and months. Yesterday Ellie had an ultrasound of her bladder and kidneys, and we should hear from her pediatrician about those results. Today she was evaluated by physical and occupational therapists in order to start early intervention therapy, and Friday we meet with the orthopedic surgeon to make a plan for treating her feet. Next week we will see neurology and ophthalmology. In the coming months she will be evaluated at the feeding clinic at Children's Hospital and have a cardiology follow-up.

Each month continues to seem better and more fun than the last. Ellie has proven to be so adaptable, especially as we traveled for much of the past month. She has done such a good job sitting patiently in her car seat, passing among different people at parties, and sleeping in new places. It was a blast seeing family and friends in Indiana and eastern Pennsylvania, but we are also relieved to be home for awhile (at least until weddings get us travelling again next month!). Hopefully we will be able to establish more of a routine and rhythm for our days. In the meantime, we are thankful for all of the love shown to our daughter and for success in making appointments in a fantastic medical system.

On road trips (and many normal days!), Mommy nurses and Daddy does the burping. Fun and hilarious fact: Chris also burps himself in the process!

Thank you to those who have prayed faithfully for us. One long-awaited answered prayer is that my wrist is back to full strength! After the Cortisone shot and a little more time in the brace it felt so much better. I have never been more thankful to be able to do normal things like lift my baby without pain or wash my coffee mug. We are also so grateful for Ellie's improved attitude about travelling and for continued progress with nursing.

Please feel free to join us in prayer for the following needs:

• The Medicaid situation... it's still not resolved. Please pray that medical assistance will be approved soon.

• As we begin early intervention, please pray that we will be matched with great therapists! This will be such a critical part of helping her develop to her fullest potential.

• Please pray for our family as we continue to settle into life here; living with family well, new rhythms, new church, new care on many fronts for Ellie... there are many adjustments to make and they are still in process.

Praise the Lord, for in everything, we lean upon His grace.

One last thought: I listened to a podcast today of a mother whose 8-year-old daughter has Cri du Chat Syndrome. While our worldviews and perhaps some ethical convictions differ, I appreciated her perspective and believe we can learn from her experiences. Here is the link to her interview with a geneticist, "A Window Into Cri du Chat," if you are interested!