Thursday, July 29, 2010

Jackson in a cycle

It started again today. "That look" Jackson has, has taken over and stolen everything that I know to be my little boy. The light in his eyes his gone. This vicious cycle has started. Jackson stopped eating. He's regressing. Loosing skills he fought so hard for. My little boy is not my little boy. He's confused and no longer able to communicate. Its hard to describe watching him in these days. He's too weak to do anything. Words he's able to make are stuttered. Its like I'm at the top of the mountain with him. He stumbles and starts to slide. I reach for his hand to hold on. Day by day we loose our grip and he slips more and more out of my hand. I feel him slipping and there's nothing I can do to hold onto him. I know whats coming. Then I hear it. The awful whimper before it all gets worse. His face goes pale, his jaw trembling, the trickle down his chin. The vomiting takes over. His body now limp as I carry him to the couch. I make a bed for him surrounded by towels, buckets and monkey. The vomiting continues. Soon, he is too weak to even hold himself up. I hold him on his side to let it run from his mouth. His body now trembling and his temperature dropping. I check to see where he's at and just like that his temperature is 92. I hold him close to me to warm him up. Knowing more vomiting is soon to come and I have to get his temperature up before it does. There is nothing I can do but keep is body stable while whatever it is takes over. All I can do now is rock him, hold him, sing to him and pray that soon I will see the light in his eyes again. The tears run down my face and all I want to do is rip my heart out so I don't have to feel it ache anymore. The vomiting continues over and over again. He's to the point of only retching. His body shaking uncontrollably. The pain is almost too much for him to take. Then again he goes limp. He is able to have some relief from the pain and sleep. This is the way it will be for days. He will sleep and throw up. There will be moments in there he will be awake and trying to talk. Just to remind me he is gone. It is still not my Jackson. He will talk but not make any sense. Sometimes a little glimmer of hope as meaningful words come out. "mommy, snuggle me closer" I hold him closer. The tears sting my eyes yet again. Somewhere deep inside is my bright eyed little boy struggling to come back to me. I stare at his face trying to memorize every little freckle. I wonder where he goes and how much he is aware of whats happening to him. Praying he's not in a lot of pain. The petechiae(tiny bruises from his bleeding issues) have come and will soon out number the freckles on his face. The vomiting has stopped now. He is finally able to really sleep. Hours later he wakes up and slowly opens his eyes to look for me. I see him. Its my Jackson! He's come back to me. Whatever took over his body is now gone. The animation in my son has returned. Happy tears that he's returned from the dark place. But then we wait. Wait to see what all he lost. This time its motor skills. He can longer walk up and down stairs. He has to relearn. Rebuild all those muscles. He is 4 and relearning to go up stairs. This cycle lasted 6 weeks. His longest yet. He missed most of the summer. We had so many plans to head to the pool, the park, the zoo. Instead we spent days and days on the couch. Now that the cycle is over emotions try to take over. I'm overjoyed that I look at my son and he is there. The light in his beautiful eyes shines at me. He whispers sweet "I love yous". Underneath I'm still sad at what we missed. At what he missed. I try to focus on the moment. Making the most of the next few weeks of summer. Playing with the boys as much as possible. Making myself not worry about when the next cycle will start and cherish the good times we have. For now life is good!

The pictures go through the start of a cycle to when the vomiting starts. These cycles Jackson has had ever since birth. Sometimes we have months in between sometimes only days. Some are worse then others and include different symptoms. A lot of the times they include seizures too. This last one he no seizures but was his longest one.

Monday, July 26, 2010

First Post

Picture taken of Jackson and Noah driving the fire truck on the playground

So after deciding on starting this blog I couldn't decide on what to do as my first post. I kept thinking about the different topics that I would post about or describing myself but what it came down to is being a mother. That's why I started this blog. I have found my greatest joy in being a mother. I've grown and changed over the past 4 years and learned so many new things. My children are my joy and make me want to be a better mother for them. This will be about my family with updates on my kids, things I've learned, and things that have helped me be the mother I am. Topics may include, of course, my kids, natural family living, breastfeeding, c0 sleeping, gentle parenting, babywearing, and anything about homemaking. I will also be updating about health concerns of my boys and navigating our way through special needs parenting.

To start off I will tell you about my boys. Jackson is 4 years old. His greatest love is for trains! He is the sweetest funniest little boy who keeps us laughing about all the random fun things he comes up with. He deals with many health concerns daily. Noah is 17 months and adores is big brother. He loves to chase him around. Nothing else matters if Jackson is around to play with. He also has a love for any balls. Any time he's playing he usually has a ball in his hand. I'll update more about them more specifically later.