A Future and a Hope: Humbled, Blessed, and Overwhelmed

Honesty is always the best policy, right? Let me be transparent for a few moments. After hearing from so many family, friends, and strangers how great it is that we have adopted our sweet girl, I began to believe those statements. It is really hard not to let those statements affect how we feel. I would catch myself almost agreeing with comments being made. After all when you live in our small town there are not many minorities. We hear things like "How lucky she is!" and "How great it is what you did for her!"

We attract quite a bit of attention everywhere we go. We truly only followed what God laid on our hearts many years ago. Truth be told, we probably should have begun this process a few years sooner. But like stubborn children, we said "not now!" After all, we already had four children. We got comfortable. God got our attention.

I began to be convicted of my somewhat self-righteous attitude. The Lord began to work in my heart and I was quickly reminded that we are only Jeremy and Jeanine. We hold no degrees. We do not wear designer clothes. We work hard and rarely take vacations. We do not drive new cars. We take pride in what we have been blessed to maintain. Of course, it is not ours to have. It is all the Lord's. We are special in the fact that we are God's children.....period!

As I sit in our bedroom waiting for Mariah to settle for her nap, I get my Bible out and I have my quiet time with the Lord. Yes, it is in the middle of my day. Ideally early morning would be best, but again our schedules have been upended since bringing Mariah home. So this time works out well for me. Plus, our Mariah gets to see me open my Bible. I pray she will have early memories of Mommy reading her Bible while she is lying in her crib.

My devotions have been in Matthew. I fully understand God's providence in this now. I've been reading about Jesus' short ministry here on this earth. I have read these Scriptures many times before. However God just dropped this on my lap the other day. I was absolutely amazed how many miracles Jesus performed each day. He cast out demons, healed a withered hand, made lame walk, healed a woman who was sick for 12 years, raised the dead, and countless other miracles. He had to be so tired. Then when Jesus did retreat, the crowds followed. He never turned them away.

I feel exhausted after my days here at home. We have chosen for me to stay home with our children. We homeschool our children and the bulk of that is on my shoulders. Jeremy comes to the rescue on Fridays and takes over and has a photography class with the kids, a gym class of sorts, and science experiments. Most days I love it. Some days I am ready to collapse after putting Mariah in bed for the night. Then I read all that Jesus did each day. How did He have the stamina? How do I have the right to complain?

I'm including a few pictures from our homeschool week. This year we are studying "Rome to the Reformation" and my kids are loving it. We have learned how the Romans were excellent builders and developed the first concrete and how ingenious they were with regard to their construction and use of the aqueducts. I was welcomed to our school room with a drawing of the aqueducts.

Then on Friday, with Daddy, the kids used pudding boxes and made wedges and built an arch and Jeremy explained how strong that design is and how important that method was to the Romans. He also explained how it is still used today.

I took a phone call Friday from Mariah's endocrinologist. We had our second round of blood work come back and he called to explain a few things to us. He originally put her on really high doses of steroids because the ultrasound showed her adrenals were quite enlarged. He said that he needed to give her a dose that would make her adrenals rest for the very first time ever and hopefully shrink to normal size. Her numbers came back much better. Original blood work showed her levels eighty-eight times the acceptable level! They are now within normal limits and we can lower the dose.

I realized this week as I read my Bible that it truly is a miracle that our baby is even here. Mariah's life has been preserved. God protected her. Our endocrinologist shared with us that Mariah does in fact have the most severe form of this and is not able to retain sodium. If you see her with a salt shaker in hand......please know it is just fine. She needs it! While in China, and shortly after we returned home, we caught her licking us. She would even lick our clothes.

Many of the other parents I have connected with have told me that our Mariah likely did not have the salt wasting form of this disease. Logically, I thought they were right. Every article or book I have read states that these children do not live past the first 30 days of life untreated. Mariah has defeated those statistics and survived 20 months! God has shown himself to me in so many ways.

He is giving Mariah the "Future and Hope" that we read about in Jeremiah 29:11.

I'm not sure why, but we have been called to deal with unbelievably difficult health issues with our children. Why does God feel I am strong enough to handle these medical problems? Quite simply, I'm not. I really am so inadequate. So many days I feel defeated. But we do our best. Jeremy is always that shoulder for me to lean on and cry. He has strength when I do not. God is our rock and ultimate strength.

A year ago during one of Ben's MRIs we were sort of knocked off of our feet. This routine checking of his repaired tethered spinal cord and Chiari Malformation also revealed a "mass" on his left kidney. The red carpet was rolled out for us that day and we immediately knew something was very wrong. After discussions with specialists and an ultrasound then a ct scan, this children's hospital wanted to do a biopsy and prepared us for a partial nephrectomy (kidney removal). After consulting with the entire team they cancelled the biopsy telling us it was too risky.

We then went for a second opinion at another hospital. At first, this hospital agreed with the previous hospital and was prepared for surgery. Then it was decided (after an hour and a half renal ultrasound) the mass was either a cyst or renal caliceal diverticula. Unfortunately, this doctor was a bit arrogant and we were not treated well. Clearly the two hospitals were on completely different ends of the spectrum. We also know it was very possible that God intervened and heard the many cries of this Mama and healed our precious child.

Ben's endocrinologist believes it is now time we get another opinion. We have been referred to a doctor in Pittsburgh. We truly are not overly concerned but there are questions that remain unanswered.

I'll leave with pictures from our beautiful day at Butcher Family Farms, just a few miles from our house. We also still have a little one with a fever. Just today it was 101.0 and she has a cough.

Enjoy the pictures! Here we are....it is very typical in our house that the girls are ready before the guys!