Special post from Grandma

One thing I love is having other people share on our blog... I really like getting stories from other people’s perspectives. I am currently begging my husband to write something from his point of view. I don’t know if that will ever happen but I feel like he has such an important story to share that it would be a shame if he didn’t. Feel free to give him a nudge for me :)

When we began, I also asked my friends and family if they would write for the blog. Whatever came to their heart. Whether I’ve written about the same frame of time or not. I treasure the layers of these stories. I look forward to continuing to share other people’s experiences as well.

This beautiful blog was written by my Mamma, I hope you enjoy it as much as I do.

Love you Mom!

When my daughter asked me to write something for Keegan’s blog, of course I said “Yes, absolutely.” Then I started thinking about Keegan, the last 6 years, and how I can share him with you.

First time meeting Keegan in the NICU 06

 When my daughter asked me to write something for Keegan’s blog, of course I said “Yes, absolutely.” Then I started thinking about Keegan, the last 6 years, and how I can share him with you. I have to start with one word to describe Keegan, he is precious. His life force is both excessively delicate and incredibly resilient. I think of his fight to live as newborn and how incredibly calm and serene he seemed in those first few months. Life around him was chaotic as we were trying to absorb the diagnosis and adjust our world to do for him anything and everything that would make him not sick or less sick. I say we, because Krystal, Conner and Keegan came home to live with JD and I when Keegan was released from the NICU. I honestly can’t imagine a more important opportunity than to support your child as they are supporting their child in the tough “I wouldn’t wish this on anyone” times. Having a deep and abiding love for Keegan isn’t tough.  Keegan has always been adorable. He was a cute sweet baby that you could hold on to forever; he rarely fussed.

Me holding Older brother Conner and Keegan

 I tell myself he liked being held even though he never requests it or responds to physical touch the way babies and children usually do. Presently when you pick Keegan up he will respond with a smile or giggle, or snort, if you are lucky you get a laugh or shriek. The opportunities of picking him up are like the days of spring, they will merge into the season of who knows. I imagine walking side by side. I will apologize now for rambling around mentally. Reading this may be confusing to some. I hope that along the way I make points and give you insights to the life that is Keegan’s.

Post bath-time

Before Keegan’s first birthday he started having seizures. I don’t really have any idea of what that was like firsthand. He couldn’t communicate to us what was happening. We entered a dark and scary time, knowing that his life essence was being attacked by some force that we couldn’t see; but we could tell he was fighting it. Those daily battles definitely took a toll. 

ACTH really helped get the seizures somewhat under control, but they made him miserable... And really chubby!

Keegan fought the fight though, and he did so with what anyone would consider little complaint considering how much I imagine he endured. I think back now of how terrifying those days were and how I prayed and begged and worried and prayed some more. I think of how I felt helpless, thinking that somehow my damaged DNA or gene makeup had manifested itself that way and it’s causing my grandson to suffer. Ahhhh guilt, the Devil finding his way into my head. I rebuke you Devil, you lie. I’m guilty of a lot of things but this isn’t one of them. My DNA makeup has been a thing of mystery my whole life. Having a birth certificate with blank spaces in the “name of father” section contributes to that. My mom dying when I was 6 and being cut off from the only members of my family who may have known or know the answer to that question but refuse to discuss the subject keep the mystery alive. Who knows what clues lay in the past; I sometimes wonder but then the present yanks on my attention (squirrel) and I am off leaving that subject/question for another day. I have on many occasions felt God’s presence and influence in my life so I accept the fact that He loves Keegan and I accept the fact that God has always held Keegan close and I am grateful for HIS presence especially on the dark days when our hearts were fearful, doubtful, angry, or distracted. He is always present even when we don’t see it. I remember how once the seizures were under control Keegan showed glimpses of his personality; a smile or giggle.

Like this moment...

Moments like these are so precious and sweet that I tear up thinking of them even today. I remember the victory of Keegan learning to sit up on his own.

 I think of his recent milestone of standing on his own and how he will walk with you (with guidance); or in the gait trainer and how I have been told that in school he will just take off. Zoom Zoom! 

These mental visions make me smile and tear up because they are hard fought victories for him and Krystal and Rick. Those who have loved ones who have gone through the hours and hours of multiple kinds of therapy to come back from head injuries or other physical trauma know what I mean.

Raising Keegan has come with many other challenges; one that came to light very early on was food. Every living thing has to eat to continue living. As an infant, Keegan couldn’t take any type of formula except Nutramigen. He didn’t take to breast feeding, which was very hard on Krystal who desperately wanted him to have the best possible chance. He was in the NICU for the first 2 months of his life; that meant pumping every day. I don’t remember the details or exact timing of when Keegan was switched to formula. I do remember that Krystal had to try several different kinds before finding one that didn’t make him vomit profusely; those were more anxious moments in what was already a nervous time. Keegan has never been a “motivated” eater; his body doesn’t send him the chemical signals that spur the desire to eat. So getting him to eat enough is an obstacle. Obstacles must be overcome! So feeding Keegan food that is packed with nutrition was the goal. Krystal spent hours reading books to learn more about food. She learned a lot more about food than I will ever know. Keegan, Conner and Cooper benefit from all that effort and knowledge. Krystal researched different grains and interesting things like brewer’s yeast to increase the amount of protein in Keegan’s diet. She spent countless hours steaming and processing and freezing fresh veggies and fruits because she is dedicated to giving Keegan the best. Making food that was good for him was only part of the battle. Remember Keegan isn’t a motivated eater. Many many many times the meal itself required patience, coaxing and sometimes getting even a few bites into Keegan’s mouth required a little more; like pinching his nose shut and getting spoonful in real quick when he opened his mouth.  Keegan has always had the same attitude about food. He isn’t a picky eater, he is an “ehhhh whatever” eater. But meals deliver medication everyday; medication is not negotiable so neither is getting food into the mouth. I remember Krystal telling me that the doctor or doctors advised her to have a g-tube put in Keegan’s tummy and how she agonized about that because she intuitively knew that while that would make life easier it wouldn’t necessarily make Keegan’s life better. I have read that children with ONH/SOD and other brain type disorders, sometimes have aversions to some textures and that children sometimes don’t want to or they often have no motivation to eat, g-tubes are an alternative that works for many families. Knowing what is the right thing to do for the individual special needs child isn’t an easy thing. Knowing your options, evaluating the pros and cons are important especially when it comes to medical stuff that is somewhat if not completely permanent.

I’ve come to see that each child with ONH/SOD is as unique as a snowflake and each of those follow its own path. I am grateful that we have special moments in time watching Keegan grow. I don’t compare him to other kids his age whether they are healthy or they have been diagnosed with SOD or some other disorder. I know from reading bios about many children with SOD that the impact the disorder has on the individual is as unique as one of those blown ink drawings you see. Knowing that Keegan’s drawing is still in the beginning stages with many more additions to come leaves me curious. I am hopeful and grateful for everyday.

We have experienced pure happiness watching Keegan reach a milestone of standing on his own without harness etc, for 5 about minutes. He is also currently working on and becoming more familiar with feeding himself with a spoon and crawling across the floor on his hands and knees. I know that we influence but don’t control the timeline. We enjoy and celebrate the milestones and just like families with “normal 6 yr olds”, we celebrate the moments “look, look, he has it” and give thanks for them because those moments are so incredible. We are blessed enough to witness them and be mesmerized. Like any parents we want nothing more than to have and to share our joy. In order to get more, Keegan has to work through hours or days or weeks of effort and learning. While he works mom and dad anticipate, manipulate, encourage, support and learn whatever they can to help Keegan reach the next goal. Nothing is taken for granted. I know you understand, there really isn’t anything a parent won’t endure if it will benefit their child whether its hours of piano practice, years of sitting on a bench or chair watching games, weeks of sitting next to a bed next to a child that is undergoing chemo or treatment, or giving them a kidney or plasma because it will extend or save their life. I also accept that while I am Keegan’s Grandmother and I love him dearly and give him anything humanly possible that one thing is true; I don’t fully understand what it is to be his parent because as close as I am, the responsibility for his life doesn’t rely directly on me like it does on Krystal and Rick. Keegan’s very existence depends on their constant care and vigilance. Keegan is 6 now, he is walking with support under his own power and he is learning to crawl. He experiments with expressing himself verbally; the other day Krystal got video of him repeating a syllable “TA” for her. That’s one of those rare moments I referred to earlier.

Krystal and Rick will keep working and planning and building on the skills Keegan has through the days to come. They will take one day at a time. Keegan will continue to need help with meals, baths, changing diapers, getting dressed, daily hygiene, etc. I continue to hope and pray for the day when we can make a peanut butter & jelly sandwich, cut up an apple, pour a glass of juice and tell him lunch is ready. It’s a simple but beautiful vision.

 Krystal and I have talked a few times about how some people think that if a parent has a child with disabilities, illnesses or diseases that the parent did something to deserve that. Like a curse or Karma or some other type of punishment. Krystal as a human can’t help but be hurt by these opinions or statements even if the people who tell her this are misguided or in some cases just being spiteful because of some imagined slight. I have told her on multiple occasions that I believe that having a child like Keegan is an exceedingly rare opportunity to witness the purest love this world has to offer. I know that love like this doesn’t come without sacrifice and pain but through those experiences, this is the most complete; unconditional kind of connection. 1 Corinthians 13 speaks of love and what it really means to love and be loved by another. The last two verses have been a light for the path that I find myself on; I imagine that all of God’s children are on the same path or a path that is similar. For now we see in part as if looking through a darkened glass but then we shall see clearly. Now I know part, but then I shall know as I am fully known. Now abide in faith, hope and love, the greatest of these is love. So, I will continue to live life as it comes to me; and since my life could have ended already I will be thankful for each day. I will continue to draw comfort and knowledge from the faith that the Good Lord has been gracious enough to let me have. I will remember that I am, and Keegan is, saved by Amazing Grace, and that sometime in a future that I can’t see or predict, we will be together. Seeing each other without the obstruction of the dark glass, and we will know each other more fully and it will be glorious. Someday…