I've been in Guatemala, a good while now and I remember when most of the kids came to Hope for Home. Not all though- Ruavis is one of a handful who were with the Family before I came.
I remember reading about this little man arriving and practicing a name I had never heard before.
I read every detail of the seizures that were causing him so much pain. He was in crisis even while arriving at the home.
Ruavis has microcephaly and cerebral Palsy, and as you saw, many seizures.
I read about Brittney and Daryl's nearly sleepless night trying to comfort him, and I could not wait to meet him just a few months later.
I've gotten to be part of something special in watching Ruavis grow. I met him when he was just 2 years old, and now he is 10!
Now, Ruavis is one of the kids who gets less attention. This is not favoritism, it's that he does not walk or talk or come up running because somebody took his toy and he want's justice.
Ruavis also does not cry to make his needs known. He mostly sits in his space and does not respond to the noises around him.
Ruavis also is not tiny and baby sized like he used to be in those photos above. He is heavy and stiff and hard to hold.
For all those reasons, and very understandably, visitors gravitate to some of the other kids who run up open arms, and caregivers respond faster to the cues of others kids who can cry to express their needs, and sometimes Ruavis gets less attention than he should.
I have a bit of a photo gap, but here are many from 2018 on. Unfortunately, as you'll see, I lost some of his better years.
Early on, you could get Ruavis smiling and laughing with a strong tickle.
As time passed, it became harder and harder to get that laugh. We would have to start tickling and go and go maybe for a full minute before he reacted and brought a small smile. I remember how much our arms would burn, but we would tickle on just to get that reward of a Ruavis smile.
I remember the time that smile never came.
That marked a change.
He had some phases where he experienced pain. Excruciating that no hugging could relieve. We would take turns pacing with him for hours and hours in the courtyard during spasms and pain. This would be resolved through medication adjustments.
Later Ruavis started having trouble drinking his bottles. He began to aspirate some of his feedings. Then more.
We placed an NG tube when he was no longer able to eat. I'm not sure if I got good at placing them, or he sensed it less, but after a while, he wouldn't even cry when I placed his tube.
Finally we got his g-tube surgery, and some peace of mind that he would be able to get what he needed safely.
He seemed to settle into a new normal. He had less pain, and was receiving nutrition safely, but he seemed to have less of everything else too.
By this point smiles were rare. I should say, true smiles. One upside to his seizures that continued to come all too frequent is that he smiled huge during most seizures.
More time passed and Ruavis began showing signs that his body was not doing well. Ruavis has had more and more trouble with his breathing. He would hyper secrete and vomit phlegm despite medical intervention. He would cry, soft sad cries up to nearly screaming cries. This was not as common as his deep sleeping though.
Ruavis began cycles of deep sleeps when nothing can wake him. In some of these, he would sleep for an entire day, sometimes nearly 2 days at times, and when sleeping this deep, his breathing would be very shallow, and he would not fill diapers- no urine for up to 12 hour spells. His body would swell up.
Then was the conversation with his doctor, and the move to focus onto Palliative care. The truth is, Ruavis continues to deteriorate, and will continue to decline.
That is why this birthday was so special. We know he does not have many left, so celebrating Ruavis is so important.
Let me just say how hard it is to shop for birthday gifts for kiddos like Ruavis! Toys are no good, and beyond icing on his tongue, he doesn't eat by mouth.
This was perfect-- a gigantic, super soft, warm and fuzzy blanket!
It was big enough to wrap around his entire chair!
Ruavis was very warm and cozy, and he smiled!
Ok, now, some of this was still form a seizure; maybe the bigger smiles were that. But aside from this, Ruavis's face was the most relaxed and content I've seen him in years. He kept this up for a while.
In this last one, his eyes were not flickering, and his head was fully relaxed. I truly believe this was a smile of contentment.
God has used Ruavis to teach me some deep truths. First spoken beautifully by my friend Brittney about a special friend of hers, Ruavis cannot give me anything. He can't do anything special for me, but I love him immensely. Actually, he can make messes. He can have diarrhea through his chair and onto the floor, or vomit on his shirt. But those things don't make me love him less. Nothing he can do can cause me to love him, or make me love him less.
It's this way with God. There is no mess bad enough, hole deep enough that we will give up and stop loving me. I can't earn his love, or lose it- he loves with an unconditional love and I'm a special needs child who can do nothing for myself. Ruavis helped teach me this truth.
Ruavis is a very special little man, and every moment is a gift. Thank's for giving us a such a fantastic gift on your birthday Ruavis!
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