I’m a little behind for Holoprosencephaly awareness week, so I share this image today. These kids are rare, special & interesting.
Cayden had MIH-V variant of HPE in which he had very little frontal lobe (the part of the brain that gives us cognizant thoughts). In his case, it also meant he was missing most of his corpus callosum (which allows the sides of his brain to talk to each other, making physical movement very hard to coordinate). We were told he would never be able to comprehend anything, including the thought that we were his parents (a vegetable they actually said). Yet he was always alert, aware & on par intellectually, EVEN though he was profoundly deaf & had cortical visual impairments & was considered legally blind until age 2.
He understood sign language, spoken words & the fact that he was different & that he didn’t like that. He colored, drew, did schoolwork & more therapy than a kid should have to endure. He was a miracle & a blessing & I miss him immensely, even 6 years after his death.
He was the essence of perseverance, which (as we discussed in church today) brings HoPE. Hope in the resurrection, through Christ, and hope for the future. And as I see it, HoPE for an eternity I can spend with ALL my children, those with me now, those I have yet to meet, & my sweet Cayden who I will see & hold again someday.
He was my living example for this verse, and I know how true it is for me and our family.
Romans 5: 3-9
And we rejoice in the HoPE of the glory of God.
3 Not only so, but we also rejoice in our SUFFERINGS,
because we know that SUFFERING produces PERSEVERANCE;
4 PERSEVERANCE, character;
and character, HoPE.
5 And HoPE does not disappoint us, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.
6 You see, at just the right time… While we were still sinners, Christ died for us.
Christ’s death and resurrection promises us eternal life, if only we believe. And why not believe, if it means an eternity to spend not only with Christ, worshipping and glorifying him, but an eternity to love those who have gone before us to Heaven. Who we will see made perfect in Christ.
Holoprosencephaly, by its very nature, (and in its very name!), gives children and their parents struggles. It is inevitable. It is a challenge and a blessing all the same. It creates perseverance in us as parents, to push through the sleepless nights, the doctor’s visits, the hospital stays. It creates perseverance in the children to push through the pokes, and prods and difficulty walking, talking, eating, and sometimes even breathing. It causes suffering in the all-too-common early loss of these precious children. That suffering creates character, and as a result HoPE blooms eternal.
As Cayden’s parents, we chose HoPE when the prenatal diagnosis was grim. We chose HoPE, that a cochlear implant would bring hearing. We chose HoPE that Cayden would talk and run and learn, even with his tiny frontal lobe and MIH-V HPE. And even in his death, we choose HoPE that we will have a glorious reunion with our firstborn son someday soon.