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…

Jonathan

Today we begin another silent auction on our Facebook page… All of the proceeds are going to help children with severe developmental delays receive Intensive physical therapy. I pray that one day soon everyone’s insurance will cover this therapy. Until then we can’t sit by knowing other kids would be missing out on this opportunity.  I am extremely excited about the first family we will be helping. When I decided this would be our next step, I knew Jonathan would have to be the first. I met his mother Nancy last year at our kiddos Kindergarten graduation. After the beautiful ceremony put on by his teachers Barb and Missy, I was introduced to Nancy. She was also raising money for her son. She was trying to get him into a physical therapy program. This was the first time I heard about the program. We spent some time talking about fundraising. I told her what we were doing, what worked for us, etc. Since then I’ve gotten to know her a better. I believe she is a remarkable woman, and look forward to seeing Jonathan grow!

Here’s their story:

Jonathan came into my life October 3rd 2006 at 12:36pm. The moment I laid eyes on him, I fell in love. His honey eyes were the most beautiful I have ever seen. He was absolutely perfect.
On December 12, 2006 my son was fighting for his life; he had been a victim of Shaken Baby Syndrome. I wished it was all a dream but it was not. The bad news kept coming. He sustained severe brain damage. Had I known what happened to him they might have been able to do something sooner. Instead it took days to find out what happened to him. Doctors had no hope; he would not survive. I refused to believe, I prayed, I was not giving up and neither was Jonathan.
Jonathan spent two long months in the hospital recovering. He was left with severe physical and mental disabilities. He was diagnosed with Spastic Cerebral Palsy, a condition that limits his use of both legs. His vision and speech were also affected; he is non-verbal, and has limited vision. Jonathan has spent countless hours in physical, speech, and occupational therapy in school and out. He has received Botox injections to both legs. He participates in equine therapy as well as aquatic therapy, which he loves. Progress has been slow and hard won, but we appreciate each little victory thanks to the therapists who work with him every week.
We believe he is ready for more, and Intensive Physical Therapy will greatly benefit him.

He is not ready to give up and neither am I.

Nancy

Photos courtesy of Jeramie Lu photography

Wow right!? In the brief time that I have known Nancy, it was obvious that she will do anything for her son. She is soft spoken, shy, and so sweet. She is also incredibly strong. Her story is tragic, and she could easily sit back and wallow. Instead, she fights. She has pursued every opportunity available to get help for her son. They have already raised more than half of the money needed for Intensive PT, and Jonathan is signed up to start in July! Now, we are going to help them finish the race.

I thank you in advance for all of your support, not only to my family but also to others like mine! I am so glad you also see the importance of supporting our unique families. Just a little encouragement fuels the fire needed to keep going on those very hard days.

Why Me!?

Hello. It's another 2am blog deposit here in my brain. As I lay in bed trying to fall asleep my mind wanders all over the place. I look forward to church in the morning; think about all that needs to be done, wonder who will be speaking, etc. I thought about other people I should contact about our upcoming silent auction, and my hair, bouncing all over the place. I read a blog recently; actually, I read two, about adoption and supporting families after they bring their child home. They brought up many valid points, things those of us that haven’t been through that experience wouldn't think about. While I made mental notes, I also noticed the commonalities. Our situations are very different and still have plenty in common. I also read another blog from a parent with a child who has autism in which she talks about how she would like her child to be treated (in which case she pointed out that this child should be treated just like their sibling, and like any other kid). It all brought up some very painful moments of so many things people have said to me along the way. People can have the best intentions and still say the dumbest things. I made plenty of mental notes. Compassion is something that has always been very important to me. I make an effort to see things from others point of view, to try to be mindful of what I say and how it is perceived. I get irritated with people who don’t. I could come up with a list of things you should avoid saying to a parent with a child with severe special needs… Maybe I will get around to my own version of that post.

Anyway, that rabbit trail lead with our silent auction, which we are working on to raise money so that children much like my son can receive therapy that is not currently covered by many local insurances. I thought about how difficult it is to raise a child with special needs, and how that difficulty compounds with the severity of their developmental delays and health needs. I briefly allowed that door to open a crack and think about the "why me?" not in a whiny fist shaking at the heavens. But an honest, confused, God I could use some affirmation. I believe that everything happens for a reason.

I used to believe that my life was hard, and I have this child because I am being punished for my mistakes. I feel this constant need to prove to the world that I am a good person. I didn't intentionally do anything during my pregnancy to harm my unborn child. It doesn't matter how many Doctors tell me that it isn’t my fault. I feel like if I don’t prove myself everyone around me will think this is my fault (yes because sometimes I blame myself as if I must have done something wrong). Oh how easy it was to be a hamster in that never-ending wheel! Thankfully, I am getting over that. Case in point: today I took two of my three boys to the grocery store at 11am in their pjs because it was cold and I didn't feel like getting them dressed. As if this job wasn’t hard, enough I have to keep heaping all sorts of judgment and criticism on myself.

 Here's the part where we get real. Forgive me in advance. I feel/felt that pressure because I hold others to the same judgments. I think some kids with special needs have parents who are drug addict’s smokers neglectful or you name it. Whoah now before you chuck stones at me. I don't believe that is ALWAYS the case, in fact I KNOW better. I have met MANY wonderful people who have a child with special needs. Whether or not it is the truth it is hurtful. Whether or not it is the truth, what business is it of mine? At one time, it was thought that Septo-Optic Dysplasia was a result of the mother drinking during her pregnancy. Well great! I was 21 when I became pregnant with my son and there is a possibility that I had a few drinks before I knew I was pregnant. It now appears that this information is not accurate. If that were true, I suspect there would be many more cases of Septo-Optic Dysplasia.

For a long time, as I fought to understand what was going on, I was ashamed. I can feel God shaking his head at me; I have it all wrong you see. I have to laugh because we are caught up in a tangled web of lies and we miss the truth completely. As that all unravels and I begin to see more clearly I let go of those misconceptions. Before I just ran away. I could not believe in a God whose punishment to me was to punish an innocent child. Keegan’s disorder is not my punishment. I can’t explain it, but he is a blessing. If anyone else said this to me, I would scoff at them. It’s something you have to see for yourself, kind of like throwing those bible verse grenades. What I do know is how dramatically that little boy has altered my life. The many things I’ve learned as a result of having him in my life. I can see a small part of the purpose in all of this. The beauty of God's love for me is more than I can understand, it is perfect, and something I will never fully know. I make mistakes, but they are all woven into His perfect plan. Each experience being a thread connecting one to another to create something I cannot see yet. It is hard. We only see life through broken eyes, it distorts reality. One day we will see with new eyes. Our heart will be mended. I can only imagine the beauty! I try to picture seeing like a hawk with so much detail. Or maybe a better reference would be to say seeing like Bella as a vampire. LOL I just saw Breaking Dawn

Back to the point, why me? While I don’t have a full answer, I know a little. Because that is exactly what I needed to get to where I am right here and now. To share this story with you. To tell you that no matter what you may feel, you are not alone! Maybe you are like me. Maybe you aren’t. Like the adoption blogs I read maybe this will provide insight for you that you can use to love another mom/kid/family better. What I know is that it is more complex than I can understand, and that it may seem like an earthquake ripped through my life a split my heart like the Grand Canyon (at times). Nothing I face is remotely close to that of Jesus, and while I am not insignificant I am not the earth nor am I the sun which it rotates around. You know what’s funny to me… paradoxes; they keep jumping out at me. I am but a grain of dust, but don’t take that to mean I am worthless, I (and you!) are treasured and loved in ways we couldn’t fathom.

Another reason I believe I am here, writing this blog is to share my journey in my relationship with God and how that has been affected by having a child with special needs. I believe there are many people out there like me that take that diagnosis, that horrible earth shattering moment, and take that as their punishment and turn away from God. How could anyone believe in a God that would do that? I believe it is a natural response given the lies and corruption found in religion. I want to share why I came back. How much better my relationship and my life is since those lies have been removed. It is hard to put into words; it is an overwhelming feeling of peace.

I think much of what the pastor hit on in church this Sunday as he spoke about the kingdom, speaks volumes. He asked the congregation to close their eyes and picture heaven, a place with no hospitals, no illness. It reminded me of a time when I came to the realization that one day in heaven Keegan will be able to see. Keegan will be able to walk, run , and play. Keegan will talk to me! (That last one makes me cry every time I think about it!) I understood that I couldn’t do that on my own… No matter how much therapy, or how many doctors we see, or any other treatment that hasn’t even come out yet… I can’t do that. So I said okay God, I will give you my tiny little seed of faith and let you grow it! Because if that’s what you have to offer, what do I have to lose?

New Year

Here’s a quick update…. We’ve been a busy little family! 

His astronaut hat :)

My sweet baby Cooper is a full blown toddler who has taken the terrible two mantra very seriously. He keeps us all so busy… From yelling NO! Get down, put that down, stop, come back... to smiling at his funny quirky self who flung Christmas dinner like and angry bird off his fork where it splattered all over my floor (the dogs were happy). To laughing as he swivels his hips and dances to music or lays on the floor to do push-ups like his brother and uncle. He brings so much light to all of our lives. Today as he and big brother Keegan were taking a bath he insisted on dumping water on Keegan’s head to rinse his hair out… isn’t he sweet? LOL

Keegan was on track break for the month of November during which he was very busy doing Intensive Physical Therapy, which I will get to a little later. He’s also been very busy now that we are back in ABA therapy; he is able to pick up a spoon from his bowl and take a bite (28 out of 32 times one day!) and very much on his way to feeding himself! He adjusted well to getting back into the routine of school and therapy. We had to fight our insurance to continue getting ABA therapy as they changed their requirements… Now Keegan has a diagnosis of ASD. What’s one more label!? Don’t get me started on how irritating it is to have to have a specific name brand diagnosis to get a service when my kid has the same need if not more as a kid with said name brand diagnosis. I am still boycotting cutting his hair, it’s getting long and curly crazy (sometimes bird’s nest-y) and everyone loves it but dad. Hence the boycott! 

Conner is attending a new school. We decided to try out a local charter school that focuses on literature and reading (one of Conner’s strengths).I am not cut out for homeschooling. I gave it my best shot. It’s “not for us” and I we are all so much happier. He will be seeing a neuropsychologist in January where we hope to find more answers as to what is going on with him. As I mentioned before he was diagnosed with ADD three years ago. We've had no success with any treatment method this far. Of course I couldn't get the “easy” ADD… is that even out there?

All in all these kids alone keep me busy!

We had a wonderful Christmas. Family came to visit from California, and my little brother was home from basic training… I don’t think I have ever baked so much! With a handful of teachers, 8 therapists, doctors, specialists, bus drivers, and other wonderful people in our lives, I had a lot of treat tins to give out! Boy were we busy with holiday festivities, I love the memories we make during this time of year!

Now I am gearing up for next year, with it comes a new project. I have decided to begin raising money so that other children can receive intensive physical therapy. There are so many kids that could benefit from this therapy and it is not currently covered by Medicaid and most insurances. I will be working diligently to get events and fundraisers planned.

Did you know that this therapy is touted with teaching kids to walk? That was not our expectation going into this... But that alone had me super excited! If other kids can learn to walk it must be fabulous! My only hope was to see some developmental gain… Which we did! Keegan’s improvements were incredible! He is now standing without support and maintaining balance for up to 5 minutes! He can crawl (although finding the motivation has been a challenge)! His muscle tone has improved drastically; he is no longer stiff like a board, which makes it easier to get him in and out of his car seat and wheelchair. He learned how to transition from sitting to standing and vice versa as well as going from a crawling position to standing and vice versa. He is walking with support much better! We are now having him walk from bed to the living room every morning, and having him stand rather than picking him up off the floor. I am guilty of not making Keegan do things because it seems faster to do everything myself. We are trying to implement his new skills into our daily routines. His therapist is confident that one day he will be able to walk with the assistance of a walker! They would like Keegan to complete this therapy 3 times in a year… Looking forward to what he gets next time! I also look forward to seeing other kids come out of this program, and what they gain from it. (If you want to see the videos... check our Facebook page!)

Was that quick enough?? I am fresh out of time! One last thing... We didn't get around to sending out cards so here ya go:

We would like to wish you a very SWEET New year!

With Love from our Family!