Sorry for the late post, I apologize. I was busy getting ready to start school with the kids tomorrow, trying desperately to complete the re-finishing of Skylar’s new/old desk. This is what happens these days… when I am deep in the recesses of my mind, remembering all the good and bad times that came with Cayden, my two living kids find me & demand my attention. Life goes on, doesn’t it?
I was talking with a friend this morning at church and she said how inspiring my posts are, how they make her want to do more for her son who has some special needs of his own. Another mom said how she is a little awed by me and my advocacy and persistence for Cayden. Others have commented on how great a mom I was/am. I feel very humbled by these comments & truly appreciate them, ladies & men (you know who you are). But this praise is not the reason I am sharing my heart and soul.
So why am I writing all this? Why am I putting myself to this challenge?
I write to raise awareness. I’m sure many of you reading have not heard of holoprosencephaly before reading these posts. Its a challenging word, with a challenging life, as long or short it may be. Maybe this little bit of information can bring some curiosity, for you to learn what it all means, how to help, and how not to judge a child who has severe disabilities and possibly facial malformations. Their soul is the same as yours and mine, and worthy of respect and honor. They are not vegetables, they are people! They are not necessary abortions, they are children of God.
For you, fellow HPE parents, I write to show you the HoPE that can be found in the diagnosis. If your child is still alive, you know all too well the struggles and joys that go along with raising one of these special children. If your child is unborn, or perhaps playing in Heaven with Cayden, maybe I can ease your journey a little as you glean something from Cayden’s story. To see that the doctors are not always correct, and that miracles do still happen. Maybe you see a bit of your child in Cayden, and a bit of me in you. I hope so, and if not, I hope you can see that it doesn’t take a supermom to make things happen, it just takes a vocal, passionate mom to speak up for their child’s needs.
I write to share the journey with my friends who know me now, but didn’t know me then. As time passes, and 6+ years have gone by since Cayden went to be with Jesus, friends change. New friends come into our lives, and old friends sometimes fade into the background as the seasons of life go by. Some of my new friends never knew Cayden, never knew that part of my story, they don’t see me as a special needs mom. They may wonder why I empathize so much with the challenges of special needs kids, but I get it. I get it on so many counts, as you now can see. My kid didn’t struggle with reading, instead he struggled with the simplest things in life (like breathing, swallowing and holding up his head!). He had so many issues, I feel that I can empathize with almost any struggle a child may have. (and if Cayden didn’t have it, one of his friends probably did or does!) I know what IEPs are & how hard those meetings can be (his first IEP/transition meeting had at least 13 people at it. 13!) Cayden had a check mark in almost every area that a child can get qualified for in school special services. He didn’t stand a chance, by many accounts, but he persevered and progressed. His progress was in tiny, little, itty-bitty improvements, but it was progress. Inchstones, my fellow HPE moms call them, milestones are much too big steps for these special kids to take.
I write to share a big brother with younger siblings. Skylar doesn’t really remember her brother, she was only 2 1/2 when Cayden died. She has inklings of memories, but they are more memories of stories I have told her over and over. Devin was not born when Cayden died, so he needs us to share whatever we can remember so that he has a picture of a big brother in his mind. He used to say how he was mad at Cayden that he died before he could meet him. Devin is such a sweet soul, a family-oriented kid, & it hurts his heart that he could not love on and know this brother that sounds so fun, and had all this cool gear.
I write to share my heart and my inspiration. People say to me, then and now, “I don’t know where you come up with these ideas!” I don’t either. It is just who I am. I am a creative minded, out-of-the-box thinker. My training is in Theatre Design. I spent years of my life researching, creating, problem solving and implementing ideas to put onstage, to create interesting and unique sets, lights & costumes. This was not really that much different in my mind. Instead of reading a play & brainstorming an appropriate solution for the scenic or lighting design, I was reading my precious child, seeing what his needs were, and trying to find a workable solution. It’s what I did. It’s what I do. I love researching things, learning things, finding new and creative ideas. This was just a new outlet for my creativity, since I didn’t have time to work with all the appointments, feedings and caregiving. Now, I feed that passion by researching, learning and discovering things to teach my children while we homeschool. It’s just a new way to use the skills I learned in my education, and in my pre-kid career.
I write to share my faith. Faith was always a part of my life, but until Cayden’s diagnosis, I didn’t really understand what it meant to RELY on God. To need to know Him, in order to make it through the day, through the pregnancy, through the fear. I needed faith to make it make sense. To make it bearable when we lost him. To know that one day, a reunion will happen as Cayden shows me all around Heaven and it’s streets of gold. And to know that this earthly life is but a mere breath compared to the eternity we will spend together. If I can inspire someone else to see that even though we don’t understand why Cayden and other kids are differently made, we can accept that, love them just the same, and not need to question the whys or wherefores. They just need love, but don’t we all?
I write to share the struggles. We had a lot of ups and downs. I can’t begin to write about them all in 28 days. We struggled with a lot of things, and always it was something. Medical equipment, insurance, funding, special services, IEPs, school stuff. Pain, sleep, positioning, comfort. Sleeping. Eating. Breathing. Struggles were commonplace, but through them we always felt Christ sustaining us for the day, through the night, and into the next day. Even the day Cayden died, Christ was there, putting things in place, putting people in place to make the transition as peaceful as possible for us. We still cannot clearly see the purpose in Cayden’s sudden death, cutting short such a promising life, but we have faith that HE knows the plan and will make it work out.
Romans 8:28 became our family verse while Cayden was a tiny baby.
And we know that in all things God works for the good of those who love him, who have been called according to His purpose.
We didn’t understand why Cayden was made the way he was, but GOD works ALL things for OUR good, and WE have been CALLED for HIS purpose. It is not for us to question, we just have to have faith that it is for OUR good, because we love HIM and are called to live for HIS purpose.
Verse 29-30 says,
For those God foreknew he also predestined to be conformed to the image of his Son, that He might be the firstborn among many brothers and sisters. And those He predestined, He also called; those He called, He also justified; those He justified, He also glorified.
WOW! Do you see that? God FOREKNEW (Cayden), whom he PREDESTINED to be conformed to the image of CHRIST. and Cayden, the predestined, was CALLED, justified, and GLORIFIED. Cayden is now perfectly healed, justified, and Glorified in heaven where he was Called to be.
Maybe it’s not as interesting to you as to me, but I dwell in the fact that God had and HAS a plan for Cayden, for me and for each of us. HE loves us and wants the best for us. And sometimes the best is hard to take, or hard to see amidst the grief and the pain. But it will all be clear in the end.
You see, even though we loved this verse from the time Cayden was very small, we didn’t fully SEE this verse until his memorial service. As we were planning his service and writing what we wanted to share, we had the “A-HA!” moment. Romans 8:28 was Cayden’s verse. He was born on 8/28.
I write to share the awe I feel at the little discoveries we continue to see in Cayden’s story.