God Sees

One of my temptations in a long season of survival mode has been to buy into the lie that God does not see me in my trials. How very easy it is to fall into the trap of doubting God's character when circumstances bring pressure and testing... but also, how wrong and sinful! I will confess that I have not felt ready to deliver an update for the past couple of months, though I have written several drafts, because this season has been a difficult one for me in every area and especially my heart. To avoid a post that either grumbled or avoided the truth altogether, I committed to listening to the Lord instead of searching for insight in my own words. In His Word, though, we find truth, rest from striving, comfort, and hope:

"For God is not unjust so as to overlook your work and the love that you have shown for his name in serving the saints, as you still do." Hebrews 6:10

This verse has become so dear to me. Indeed, He sees the moments of struggle it would seem go unnoticed. El Roi, the God who sees me, not only sees my care for Ellie but calls it worship when done in love for Him. He is just to reward this work and to preserve me for as long as He calls me to it. Like the Psalmist, I pray my response is worshipful and glorifying to the God of all mercy and steadfast love:

"Blessed be the Lord,

for he has wondrously shown his steadfast love to me

when I was in a besieged city.

I had said in my alarm,

'I am cut off from your sight.'

But you heard the voice of my pleas for mercy

when I cried to you for help." Psalm 31:21-22

Christ, who for the joy set before Him endured the cross in steadfast love for needy sinners, strengthens me to imitate His selfless love for the children of God. The strength and discipline to do this with joy and purity of heart could never come from within me; it is all the Lord. What blessed assurance to be reminded that I am not Ellie's sustainer; God is. I have treasured the truth that the Lord's eye is upon us in new ways during moments when I am tempted to feel forgotten, and I have cried tears of joy over the promise that He sees and He knows just what we need.

As for the past couple of months, we have many updates:

• Pennsylvania and Indiana have finally reached decisions for Ellie's Medical Assistance (Medicaid). Indiana denied us the retroactive benefits we were hoping for, which we eventually came to expect. One of their reasons was "failure to cooperate" in providing necessary documentation, which is a little insulting but mostly humorous because that couldn't be further from the truth. We paid our bills and are relieved to be free of those debts. Pennsylvania approved us, though, so that is a HUGE answer to prayer! We praise God for this provision of financial assistance for Ellie's medical care and therapy moving forward.

• We had a bit of a scare last month when we thought Ellie was losing weight. The Lord providentially caused Chris's mom to cross paths with a nurse practitioner who works at the closest pediatrician's office (which specializes in feeding!) and helped us get an appointment. As it turns out, our scale at home was wildly inaccurate and Ellie is still gaining on her growth curve! She is still tiny but is healthy and not at risk.

• Therapy is going well for Ellie. She is making progress in PT despite moments of resistance, and our therapist is so talented in adjusting to what Ellie will tolerate while still challenging her to continue to develop in strength and skill. We also switched from occupational therapy to speech therapy for feeding, and that has been a much better fit. Ellie started eating a little bit of baby oatmeal and purees recently, too, and that is going well!

• Chris and I had genetic testing done to examine our chromosomes for any abnormalities that could have contributed to Ellie's deletion. Our results showed normal karyotypes, so it would be highly unlikely to have more children with the 5p- deletion. The world of science would call this spontaneous, but we knew that God foreknew every part of our girl and ordained it long before she came into being. What a comfort.

• Ellie has intermittently had episodes of irregular breathing or breath holding that have raised some concern, so her neurologist recommended having an EEG to monitor her brainwaves. The results of that testing were normal, which we suspected since we did not capture one of these episodes. We will follow up with Cardiology as well in a couple of weeks to make sure we are not missing anything of note with her heart.

• I have spent enough time on hold with UPMC doctor's offices to the point that I regularly find myself humming their phone on-hold song. At least it's a pretty tune!

As I update our prayer needs, I simply must thank the Lord for how amazingly well Ellie is doing. She has truly surpassed all expectations in every area, and we are mightily blessed. I sometimes wonder if a blog with prayer requests is even warranted. That said, I will just keep praying that these reflections can be a blessing to each reader and serve as a way to keep the many people who love our family abreast of updates and ways to pray strategically. Thank you, once again, for blessing us with encouragement and prayers; we are truly grateful.

• We would appreciate prayers for Chris's job situation. His current position has been such a blessing as we wait for the new job's clearances to go through, and this generous extension of remote work will conclude at the end of the year. The clearances have also been significantly delayed, so we are not confident that Chris will be able to start at the beginning of next year as we might be looking at a matter of months in between. Please pray for guidance as Chris potentially looks for other work, either temporary or permanent, in the event that the new position is not able to begin soon enough.

• My "mommy thumb" is acting up again, so I am seriously considering surgery before the end of the year since we have already met our health insurance deductible. Please pray for wisdom and open doors to relieve this pain more permanently.

• This week we were blessed to connect with another family who has a sweet boy with Cri du Chat Syndrome. Praise God for that mutual understanding and encouragement! Please pray for continued connections in the special needs community and that we would be a light to those we encounter.

• Please pray for Ellie's episodes to be harmless and not indicative of seizures or heart problems.

• For Chris and myself, we would appreciate if you prayed that we would forsake the temptation to self-improvement to get us through hard times and instead embrace every opportunity to lay down our lives as Christ did with joy. When we are weak, He is strong.

Thank you, friends. And a special thank you to Kayla Milroy for the GORGEOUS pictures of our little family.

Grace and peace to you!