Magnificently Good

December 13, 2018 Central Nervous System, cerebral palsy, developmental delays, epilepsy, hydrocephalus, Lifelong needs, Linny, non-verbal 0 Comments

When people are considering special needs adoption they usually look over a list and decide what they are comfortable with. Looking at the long lists of possible medical needs fearful thoughts can overwhelm even the bravest hearts. Sometimes the uncertainty of needs, often based on misinformation, can generate an automatic “No, not that need”.

Here’s an honest look at hydrocephalus from our very personal perspective.

In June of 2011 our 4th oldest daughter, Emma, found a little baby girl dying in the corner of an orphanage in Africa. Emma and my husband, Dwight, were leading a mission team to care for the orphans when she discovered this little one.

Emma had frantically searched the orphanage for my husband calling, “Daddy this baby is dying, we have to do something!” My husband took one look at the fragile body before running to the office to speak to the director to advocate for her care and pleading for the ability to take her to the hospital for testing.

He learned from the director that this dying baby girl was actually 13 months old and weighed a mere six pounds. Most of her six pounds was carried in the weight of her head, enormously large from what looked to be hydrocephalus.

While there in-country Dwight and Emma’s primary focus became this baby girl. They were desperate to see her not just live but thrive and know the love of Jesus! Looking at her it was easy to tell that life had been painfully difficult for her.

I will never forget the phone call from my husband minutes after Emma found her. He pleaded with me through tears to write a post pleading with blog friends around the world to pray for her! I cried as he talked of her and immediately took to the blog world to implore my friends to pray for her. Within hours there were thousands of people around the world praying for God to heal her and for her to live!

During the two weeks there Dwight was allowed to take her for an MRI. He held her medically fragile dying body and pleaded with the Lord to preserve her life. He sang the familiar children’s song to her over and over, “Oh how I love Jesus….”

He called another missionary to ask what more he could do for her as she had clearly been starved to nearly death. The missionary whose specialty was malnourished little ones explained that with untreated hydrocephalus the pressure in the brain is great, causing her to vomit up the large bottles fed by the orphanage. She encouraged him to train the nannies to give her tiny amounts all day long. He did all she mentioned while continuing to whisper to her the song, “Oh how I love Jesus…”

The two weeks passed quickly and as Dwight, Emma and the rest of the team were leaving the country he met with the director one last time and pleaded with her that we would be willing to do anything, anything, anything for this baby girl. We would wire money for medical care, hospitalizations and surgeries – we wanted him to be sure not to let money ever stand in the way of her care!

As the mission team flew back to the States, Dwight and Emma flew to West Africa where he would teach a pastor’s conference. The entire week we prayed in earnest for that baby girl. She was so desperately sick and we had no idea how she was or if she was even still alive!

Once Dwight and Emma landed in Chicago and cleared immigration, they settled in to wait for their last flight home. While there he opened his email and found a letter from the director:

“The doctors for the orphanage have reviewed the tests you took her for while you were here. They said that there is no hope for her. They have even said we should not bother to feed her as she will never be able to do anything. Pastor Dwight, you said that you and Linny would be willing to do anything. Would you be willing to adopt her and believe with me that God is going to heal her?”

Dwight called me and read me the email and we both cried. Our prayers were being answered and at that moment we couldn’t get to our sweet baby girl fast enough!

Two-and-a-half-months later, with paperwork on the US side completed, Emma and I landed to bring her home. It then took 7.5 weeks in country to complete the paperwork on that side, but she was alive and her mommy and one of her big sisters were now there with her! We chose the name “Ruby Grace” for her as a pure ruby is of more value than a diamond of similar size! Gem-quality rubies have incredibly remarkable value! We longed for the world to know that no matter how broken she was, she had infinite value to God and to us!

And clearly, it was only His grace that had sustained her.

As it turns out Ruby does have a rare form of hydrocephalus, called multiloculated hydrocephalus. Hydrocephalus usually presents itself with one pocket of water in the brain and a shunt is often placed in the brain to drain the water for the rest of one’s life. However our sweet baby girl has over 14 pockets of water! Because Ruby’s form of hydrocephalus is so rare and complex she now has had five brain surgeries.

The first three surgeries were to fenestrate through the walls of all the pockets of water. Fenestration is where a hole is surgically made and cauterized in the wall of the pocket allowing each pocket of water to “communicate” with the others including the one with the shunt. During her fourth brain surgery a shunt was inserted into one of the pockets and, because of the fenestrations, most of the pockets are able to drain through the single shunt.

Hydrocephalus is often thought of a “scary” diagnosis but, now, having Ruby home for the last seven years I will eagerly advocate for treasures with hydrocephalus (or multiloculated hydrocephalus) and if I were able, I would adopt another dozen treasures with it! It is not “too scary” or to be feared.

No doubt Ruby’s case is by far one of the worst (if not the worst) our neurosurgeon here in Phoenix has ever seen. In fact he later told us that when he first saw her MRI he had to take a few days to just think, because he “had no idea what to do”.

Ruby quickly became his favorite (his words not mine) and his staff echoes his sentiments.

As horrible as it is, our precious Ruby had also suffered unconscionable and despicable abuse before she was abandoned and all of that has greatly complicated her health. She is also a quadriplegic due to cerebral palsy, has epilepsy and was diagnosed with cortical blindness (which God has healed!).

Ruby is a rare treasure and a delight to all who know her. Her gleeful personality brings joy to even strangers who meet her! And frankly she is a prankster. Whoever said “non-verbal” kids can’t have enormous personalities and be full of shenanigans has definitely not met our Ruby!

In the midst of all her diagnoses and surgeries the joy that Ruby has brought our family is immeasurable! She stole our hearts as a broken baby and our love for her is unmatched! Ruby’s exuberance for life is heard throughout our home daily.

Although she is considered non-verbal – she “talks” all day long! She lets everyone know what she thinks with her sounds and the few words she has been able to master so far! The word that she uses all day long is “Good!”

It’s amazing how many questions can be answered with “good!”

“How did you sleep Ruby?”

“Are you ready to get your diaper changed?”

“Are you excited to go see your friends at church?”
At that question she wiggles her body with joy while squealing a loud, emphatic and prolonged, “Goooooooood!”

Each case of hydrocephalus is unique, but we unequivocally declare that God is always astoundingly faithful, He is the giver of magnificently good things and He is undeniably the healing God.

In fact a couple of years ago her neurosurgeon asked me to do a symposium with him at Phoenix Children’s Hospital. Near the end of the symposium Dr. S opened up the large crowd for a time of questions or comments. A parent in the audience stood to mention that their neonatologist told them that they should abort the baby she had been carrying (but instead carried to term) and according to the neonatologist “children with hydrocephalus are a burden”.

Ruby’s neurosurgeon was definitely stunned at the comment and as he responded he gestured to where I was sitting and began while choking back tears, “Personally, knowing Ruby has added great value to my life and…” (pausing as he became very emotional) “I can’t imagine my life without Ruby. It’s hard for me to understand how anyone could think that children with hydrocephalus are a burden. Ruby has brought me such great joy.”

Ruby’s case is definitely an extreme one greatly affected by many other factors. However, Ruby’s multiloculated hydrocephalus does not define her. By God’s miraculous power and grace Ruby thrives, continues to heal, brings constant joy to our home and is a delight to all who know her.

Ruby is also one of our three “lifers” (we have the thrill of caring for her for the rest of our lives). And I will forever shout it from the mountaintops my gratefulness to my astoundingly faithful God that I have the profound privilege of being her mommy!

He is truly the giver of magnificently good things!

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