The Worst Kind
June 19, 2017, 4:46 pm
Filed under: Family Life

Please pray for our family. The worst kind of hurt has happened. I am lost.

Wild and Free
June 19, 2017, 12:21 pm
Filed under: Family Life

This was a stepping stone we made when the kids made theirs. I broke it, on purpose, without audience or even malice. I just did not want to see our names next to each other. It seemed like a desecrated thing that should not be acknowledged. I get physically sick when I run into things that were his (or hers), even their handwriting. She prepared meds and labeled things because she worked here and was my friend. Of course he is everywhere. They got to leave, with someone to hold, with someone to talk to intimately. They got to leave behind the constant reminders of what they left, of who they left, of whose hearts they gave no value. With every breath, I have to remember, with every turn, and with every tear of my babies. If I wake up quickly to an alarm or the cries of my children, I forget, and the pain starts to take over anew. I am tired from pushing it back constantly, from having to breathe deeply, from having to guard myself from a breakdown every single second of my life. It happens anyway, often, but I just have to keep going. I have kids to tube feed, medicate, reposition and hold and hold and hold. Apparently Liz put the stone back together. She doesn’t understand. Her main source of bonding with him was playing the PlayStation. When he rushed through our home, frantically grabbing everything he could, with his lying, corrupted and panicked hands, he took it. He took their bond, so they he may be entertained, distracted, and live in the fantasy land of a teenager. Then he promised her that he would get her a used one, a second-hand one, one that was not as nice as his. She is second hand to him now. However, he and I both know he has no way to get it and no way to teach her how to use it herself. Broken promises run wild, free and uninhibited right now in our home, with no mercy, striking out to jab and slash, with every memory, every moment from our past, of their past. We are no longer free to remember our lives, or even to walk around our house without the risk of searing pain. It is not my job to clean up this horrendous mess, it is privilege. They love me with abandon, something that they will never again share with him. It saddens me that we are wounded, but we are wounded TOGETHER. 

We March 
January 27, 2017, 11:47 pm
Filed under: Family Life

As Grace marches in Washington, we march here at home. We march as we suction Sollie at 2am, as we went to 86 (actual number) doctor appointments last year.  We march as we take the kids to see their “first mom” for lunch. We march as we hold shaking babies in withdrawal and hug their mamas. We march when we bring a meal to a single mama who is just so tired. We march when we offer to help a young dad in the grocery store pick the right kind of gas drops for their colicky baby. We march when we comfort a mama, who is still a mama, but with no baby to hold. We march when we shovel the sidewalk of our elderly neighbor. We march when we sign up to buy Christmas presents for kiddos from their imprisoned parent. We march with love for all women, love for those children, BOTH at birth and throughout life, love for the imprisoned, impoverished, hurting and lonely, from conception to natural death. #whywemarch #marchforlife 

January 22, 2017, 10:37 pm
Filed under: Family Life

This popped up on my Shutterfly feed from four years ago. Through the eyes of a mom to special needs/medically fragile kiddos, sometimes these “time hop” reminders are more bitter than sweet. We see what a child could do just last year, but now cannot, we see, and more vividly, feel the loss of missed milestones, the missing of certain things that others take for granted. But today, as this popped up, I smiled. Sollie was just a couple days old. His seizures had not started, he drank his bottle like a champ, his body was not stiff with the effects of his missing brain, no trach, no shunt, no gtube, no oxygen, no suction, no cough assist, no percussion vest, no pulse oximeter… just a baby with half a brain, being held and loved and looking very much like a “typical” baby. And while we do mourn the lost things that many of our kids will never do, the current that holds us up is joy that they are HERE with us now. Sollie has the sweetest gaze, he looks for his daddy the second he walks in the door, he loves his movies, he arches so that we will pick him up, he is HERE now and we are grateful. What an incredible gift to know your time on earth is limited. We all technically know this, but a couple of my kids keep this fact front and center in our minds. I think that is why so many children like Sollie are aborted, we are scared of suffering, both theirs, but more of our own. We want to control everything, and so we think we are being “merciful” when we snuff out the life that is not up to our timeframe, or up to our expectations. Sollie has taught us to love and endure in ways I did not think were possible. We would have missed out on so much if he had not been allowed to live. What are we missing as a society when we eliminate or instutionalize these children? I shutter to make that realization. We fool ourselves into believing we are in control and we can escape suffering. How highly we must think of ourselves that we can control even the slightest breeze, let alone suffering. And what pressure do we live under trying to bear a weight that was never meant for us? Solomon has been more like a hurricane rather than a breeze, but he has never ever been a regret or a burden. Love does that if you let it, makes you embrace a life that simultaneously terrifies you. It makes you hop on a plane with three days notice to go get a baby with half of his brain, but a giant loving soul who seeps sweetness from every pore. 

Vision Boards 
December 31, 2016, 2:16 am
Filed under: Family Life

Getting our prayer/thankful books ready for the new year. This year we will be adding a vision board, something new that a family I admire does, so we will give it a try. Zeke apparently is so excited about his book that the stickers somehow migrated. Imagine that

December 21, 2016, 5:42 am
Filed under: Family Life

I kindof always hesitate to post things like this, mainly because I would never never ever want a mom to fall into the yucky trap of comparison. If you hear yourself saying “wow, I suck because I couldn’t even find our advent wreath this year and LOOK at what that GREAT mom did.” Please just hush up! There are many years that we did nothing. Even this year we have done an advent devotion about 1/3 of the time. I’m posting because I have an awesome tip! If your house is like mine, getting the kids to pay attention is a teeny tiny struggle…. anyhow I have solved it! They have to listen to the devotion, color their ornament, hang it on the Jesse tree and then and only then do they get a piece of candy. It’s a very small piece, like a Hershey kiss. I keep the candy in the labeled paper lunch bag so that when I dump the bag it has the envelope with the paper ornaments AND the candy so they know it’s there waiting for them! Compliance through bribery, yes sireee bob. Oh and Aaron doesn’t really eat, but he loves the shiny wrappers. Win-win. If you don’t want to use candy ( I used to be like that until kid #5), maybe a little simple toy. And for Sollie, who can’t color on his own, we get a stamp pad and put his finger print on his ornament. Malachi is usually asleep so we do not bug him. Huh-uh. I don’t bother sleeping children under any circumstances.

Going home!
December 20, 2016, 1:29 am
Filed under: Family Life

Sollie is doing much better. He is headed home!  Please keep us in your prayers.  It is only the beginning of he horrid respiratory season and we have already been sick for three weeks!   Nooooooo!