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?