A Very Special Case.

Dear Case, You are our inspiration. You make us stronger. You've touched tens of thousands of people with your strength. Because of you, mommies are stronger when they have babies in the NICU. Because of you, grown ups decide to better manage their diabetes and stop sweating the small stuff. They see something beautiful. They see Jesus in you and want to be more like Him. You won't understand till you're older but you've shown me that perfect is an illusion. That different isn't defective. Different is beautiful. You don't know this either but, you've been though hell. You've been through more in you're tiny, 3 year life than 10 grown ups put together and you, my beautiful boy have done it all with a smile. I will never be able to thank you enough for being so special, for making our lives brighter. As you age, I see you understand more. You know what's happening soon.....that you're going to the hospital again. That they are going to cu...

"Your grace abounds in deepest waters Your sovereign hand will be my guide Where feet may fail and fear surrounds me You've never failed, and You won't start now" Two weeks from today I will be in the Pediatric Intensive Care Unit at Children's Hospital of Pittsburgh. I'll be holding a tiny 3 year old with a hole in his scull and a catheter jammed in to monitor Increased Inner-Cranial Pressure in his brain. I'll be praying, wondering, maybe crying or laughing. I won't know if the following Friday I'll be handing my precious 4th born to a Neuro and Plastic surgeon for an 8+ hour scull, brow bone and fore head reconstruction surgery with.....I won't know how that is going to go if it does happen. I will have to trust, continually turning my anxious thoughts over to a sovereign God believing he will never give me more than I can handle and by that I mean what doesn't kill me makes me stronger....... Before the birth of our son all Chil...

So, I usually do all of Case's updates on his facebook page. If you don't follow him on facebook, click here. I'm going to TRY hard to update the best I can on here too for those of you that don't have a facebook account but for now, please pray for the important things going on at the end of this month.:) On April 28th (Monday) I'll be admitted to Children's for a procedure Tuesday morning. They will place a catheter into my brain to measure ... the pressures in my head. I will stay in the PICU (Pediatric Intensive Care Unit) while they do this. On Thursday, they will take the catheter out, do an another MRI (I just had my 3rd in December) and decide if I need a Cranio Vault Repair (an invasive and intense surgery where they will completely reconstruct my scull-*and my forehead, etc.) It's all a bit overwhelming but we know that God has great plans! We will be fine either way....If Case gets the surgery, it could really increase his quality of life an...

Rise Above Your Circumstances.  I've heard that phrase 100 times and never gave it a second thought... Until last night. Rise ABOVE your circumstances.  It's been a long month (I think I say that every month) with "normal" SN issues, 3 long days full of appointments, blood work and tests at Children's, long car rides, and you know, raising four children.... I'm not telling you all this to complain, I'm telling you this because it was last night, while I was tossing and Turing that I heard it "Rise above your circumstances." Rise above the issues, the system, the chaos, the pain, the fears that this will never be easier and BE AT PEACE. That's what's crazy about peace, we can have it admist the war. Tucked deep, down in our heart. We can feel it in the PICU and when our son's case workers won't won't call us back. We can feel it when we're tired, sad and happy.....  You see, life is not going to get easier. T...

Don't give up....Let go.... Sometimes I want to give up. I'm so tired, not strong enough, brave enough or organized enough to be the mom of a miracle. It's a privilege and a challenge wrapped in paper work, headaches and messes.....Beautiful messes.  Then I hear it....a soft, sweet voice... "Don't give up. Let it go." "Just let go.....Know your children are mine. I've lent them to you.....To parent not perfect. Perfection is a delusion." When it takes everything I have not to throw in the towel I remember, I don't have to white knuckle my problems (and trust me, it's problems I've got.....). I can let them go. Be broken and remade. "I don't want to be rescued....I want to be redeemed"......Scary thought, right? "I don't want to be RESCUED , I want to be REDEMED !" *"redeemed":  to make (something that is bad, unpleasant, etc.) better or more acceptable.  Being rescued would be...

Blessings are all around us but our vision is clouded by the trouble that is everywhere. Everyday something or 400 things go wrong, don't go as planned or turn into mini (or major) disasters. There is trouble in this world and I, have seen a lot of it first hand. Troubles come with the beautiful blessing of being the full time care taker of a special needs child. The troubles of insurance companies, sickness, un-ending paper work, hospital stays, sleepless nights, no light at the end of the tunnel.....and on and on.....It is so easy to have constant focus on our trouble to the point of creating troubles in our mind that DON'T exist. I can easily and with out even realizing it worry my way into scenarios that won't ever happen....It is at that point that I can be in charge of my thoughts. I can see how blessed this journey really is! I have to consciously change my train of thought to trust and thankfulness (a friend of mine calls it a stop thought: stop the toxic, wort...

  It's true, through the darkness and the trials. At the hospital and home, He will be with me always because I am loved and I am valued. In a world of medical. When it seems all I do is make phone calls, shuffle paper work and travel to specialists because my child is special, it's easy to lose myself. My mind frequently spins with the last medical info or the dread of the upcoming test/hospital stay/procedure.  It's a burden that is heavy and constantly reminds me that there is no end in sight....but then I remember, I am loved. I am valued and I matter. I remember when I carried my miracle who's insides and outsides were being formed intricately and uniquely He was whispering His promises into my heart. That this is a beautiful, blessed and different journey. That we'll always and forever be okay because even though our future is uncertain He will always have His arms wrapped tight around us. He's always close by to hand the ever looming anxiety and fear...