secretramblingsofapastorswife

Dear Shunt, I hate you! Hate you. Hate you. Hate you. But for real. I hate you. I hate you because you put fear in me like I've never felt before. Every headache, every puke, every virus that hits my son makes me shake in fear because I think its you.My mind immediately jumps to you.  I think this is the moment, the moment you have failed us. Every day of exhaustion. Every bad therapy day. Every off day for my son, my mind goes to you. I hate you for that.  I hate you for all the false alarms. All the CT scans that seemed unnecessary. All the ER visits and sleepless nights that weren't needed. I hate you for real.   I hate you for the moments you've stolen from my family. I hate you for the fun things you've messed up.  I hate you because tomorrow you will be replaced. Because today we found out that you really did fail us. Today the fears, the CTs, the pukes, the headaches, the shaking eyes all came together and this was the moment I feared the most. An...

Im tired. Exhausted. Burnt out and done in. Special needs his hard. Its hard hard stuff. Its exhausting and relentless. and sometimes ive had enough. I know there are moms out there that feel the same way Im feeling today. I'm worn out of special needs....but not because of my child.... Because of you. You. Insurance company that denies whatever they want whenever they want without seeing the whole picture.  Who seems to think they should decipher what can help my son and what is not medially necessary. You. Medical Supplier that can NEVER EVER seem to get our order right. Always something missing or wrong. You, who doesnt look at my child as a child who depends on you to get it right. You, who seems him as a name on a paper....if even that, maybe just a number. You. Doctor who just tells me to ignore things. They arent a big deal, but never bother to explain what is going on.  Who only wants to make decisions based on what will keep law suits at bay. You. Hospi...

I stink at hard.... like really. If one more person tells me I'm inspiring, strong or the best mom they know i might just throw a brick at them. (thats a little dramatic and btw I know you all mean well and it is incredibly heartfelt.) It can just sometimes seem like huge shoes to fill and a burden to bear.  This month has been hard. hard hard hard hard hard.  Like cant describe it hard. Like cant even wrap my own mind around it nonetheless share that hard with you. The reason I share this even now is because I again (I know I say it 100xs) I think there is beauty in honesty. There is beauty in the fact that we are not alone in our struggles and if no one is ever willing to share those struggles.....well then.... we will all feel very alone now wont we.  These past weeks have been dark. Theyve been scary. Theyve been exhausting and overwhelming. And Id love to tell you that all around me I felt Gods grace, His mercy, His love and His strength. I would love to ...

Ugly isnt pretty. Which is why when you take a selfie its always one in which you consider yourself "looking pretty." Its why tagged pictures become untagged pictures quite quickly.The problem is both our truths. That selfie, hey we looked pretty (and we did) that tagged picture....well that day we looked....we will just say not so pretty...but they are both truths. we looked both ways. Its why we clean up our house from top to bottom right before a friend comes over. Its why we wear makeup, do our hair, pin 100 pins of different haircuts..... cause ugly just aint pretty.  Sometimes special needs world is so two sided. Like crazy bipolar two-sided. Like jump the grand canyon in 60 seconds two sided.  We like to blog the pretty side. The my kids a hero. My kid works hard. My kid is amazing. Look at what my kid did side. Cause well the ugly isnt pretty and who wants to show the ugly side when the pretty is just so doggone pretty. I'm gonna step way out of my comfor...

What a day. .... .AGAIN.  So thankful for this outlet to share our  lives and to have a way to just breathe through it all. Im sitting here listening to my husband listen to "Jesus Bring the Rain." as I type my mess.  I guess we all deal different ways.   So if you arent "friends" with me on facebook here's a brief recap. Toby has a large bump on his vp shunt tubing for 11 days (a shunt tubing that keeps him alive and keeps him Toby) yesterday he started complaining of headaches and then puked.  Now some of you will be like...hey no biggie, sickness goes around...but all you SB mamas will groan with me and say, "oh man."  He felt somewhat better as the day went on so we just went with it. This morning hes struggling more with the headache and even got back in bed. (not the norm for a 7 year old boy) So my poor husband takes however many kids to a field trip with the Christian School and comes home to take over 4 other kiddos while I ta...

Its interesting to me that you can say you have the right view of situations and honestly feel like you do but then a moment something passes through your lips you are kind of stopped with what you really think. Sometimes it just slips right out. The other day I was telling a friend that had experience the sadness of multiple miscarriages that I had considered offering to be a surrogate mother for her before but then knew she probably wouldn't want me to considering I make "Broken Babies " We laughed about it and at the time it truly wasn't a big deal but I kept thinking about that term. "Broken Babies" And that was how I was describing two of my children. Broken. Was that how I viewed them? Was that how I saw what God had allowed? Brokenness. Not quite right. Not whole. The definition exactly is Broken adjective: broken having been fractured or damaged and no longer in one piece or in working order. synonyms: smashed, ...

There has been so much going on in our home that Im not even sure what thing to blog about. But I think Im going to stick to the most recent instead of the obvious thing that people think I will be blogging about. : ) I will definitely be going back to that one though. We've had an interesting year to say the least and the person who has gone through the most has hands down been Toby. Tethered cord surgery is no joke people. Its crazy. Insane. One of the hardest things Ive seen Toby go through. Not to scare all the moms of SB babies out there. But it doesn't get easier. Its hard. Its hard to explain to a child whats going on. Its hard to tell them its worth it. Its hard for them to understand and be consumed with fear and pain and yet for part of them to totally not get it. Shoooo I hardly understood all of it and the whys behind it. Then the derotation osteotomy is no joke either. It was almost harder than the TC surgery. Casts and weeks and weeks and weeks of casts. not be...