We see that God has carefully placed each part of the body right where he wanted it.
So reads 1 Corinthians 12:18 (MSG).
This is such a great reminder for parents of kids with special needs, especially those kids who have facial and other malformations. Cayden was one of those kids. God placed each part right where He (God) wanted it. Not necessarily where it is supposed to be or where it typically is, but where He wanted it for this child. Kids are not born like this for no reason, but for God’s reason. Each of them is beautiful, in their own personal way.
That’s what I saw in Cayden, a beautiful round faced little man. The geneticist, however, upon walking into our exam room saw a child with a myriad of ‘obvious’ facial deformities. After a very brief hello, he started in with this list…
low set ears
small upper lip
narrow & long nasal bridge
wide set small eyes
ptosis (not typically opening eyelids)
long slender fingers
small nail beds
Wow, he went on and on, immediately after walking into the room. My beautiful tiny son was nothing but an interesting case study for him. And his bedside manner left much to be desired for this mama’s heart!
Cayden’s facial construction was not the issue for me that it was for the doctor. As his mama I found him to be beautiful. And as an advocate for others with holoprosencephaly (HPE), I have broadened my scope for what is a beautiful face. Many children with HPE have more severe facial issues than Cayden. Cleft lips, flat nasal bridges, single front incisors, single nostril, small heads, close-set eyes all are commonly occurring to some degree in the varieties of HPE. The most severe (and life threatening) cases have cyclopia, or proboscis. That is what can happen with a mid-line neural tube defect.
It is these photos that I found 11 years ago when I first heard the word holoprosencephaly. These scared me. They were not like my child, who on ultrasound I could see did not have this severe condition. It made me turn off the wikipedia, turn off google and just love my sweet Cayden.
When I google holoprosencephaly images now, I see the faces of my friend’s children. I see the lost love of parents who never had the chance to know their child. Most of those are not just faces of strangers to me, but kids with names and personalities!
As I’ve worked with Families for HoPE, and connected with these families, I’ve learned that the parents of even the most severely affected children find them beautifully made. That unconditional love is what I see is so close to that of our creator, God.
Psalm 103: 11-17 (MSG)
As high as heaven is over the earth,
so strong is His love to those who fear Him.
And as far as sunrise is from sunset,
He has separated us from our sins.
As parents feel for their children
God feels for those who fear Him.
He knows us inside and out,
keeps in mind that we’re made of mud.
Men and women don’t live very long,
like wildflowers they spring up and blossom,
God’s love, though, is ever and always,
Eternally present to all who fear Him.
No matter how different the child looks, their parents (and most other HoPE parents) adore them, ever and always. They are the Faces of HoPE! Their spirit shines through their big beautiful eyes, and you learn firsthand that the body is just a shell, encasing our eternal soul. The fact that these children are alive is a miracle. The fact that they fight is astounding. They can learn and grow and love (unlike what the doctors will tell us.) They have so many obstacles to overcome, which can include almost constant seizures, g-tubes, breathing challenges, motor problems, and more, but they fight to survive.
God makes each of us unique, some of us just have our unique-ness more obviously visible in our faces. When you meet someone with these obvious differences, please don’t stare. Just smile and say hello. You will be blessed beyond measure at the response. And remember, their mama, their daddy, their nurse and their siblings love them to the moon and back, and are so thankful to have each day to spend with their beautiful, blessed child.
Psalm 41: 1-2:
Blessed is he who has regard for the weak;
The Lord delivers him in times of trouble.
The Lord will protect him and preserve his life;
He will bless him in the land.
I pray that you too will be blessed!
Tomorrow more on C’s body malformations…