A Very Special Case.

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...

Beautiful YOU! Dear Case, Happy three years! What a wild ride it's been. Thank you for being YOU! Bright, bold, beautiful YOU. You're different from the rest. You're insides , your outsides, your heart and your soul, I wouldn't change one tiny thing about you. I've loved everything about these crazy 3 years. I've loved the good, I've loved the bad, the chaotic and the sad. I've loved it all because it's all part of who you are and what we've become. We are different. We love more, we yell less....all because of you. You are so beautiful. Case, I'm so thankful you were born just the way you are. I love your spirit, I love your smile, you'd crooked fingers and tiny toes. I can't believe all you've endured in 3 short years, all of the pokes, all of the tests, the surgeries, the nights at the hospital but through it all, you still smile so bright. You are my inspiration and I still remember the first time I saw you. I remembe...

I Love the Way you Hold Me.  Sometimes we just need held. Sometimes we just need to give up, look at the few steps in front of us and just trust. We need to TRUST that He will ALWAYS be near. When the world runs us ragged and we can't see the light at the end of the tunnel we need to stop letting the busy control us and just be held. We need to remember that there is always someone (many) with a harder battle and when we feel too tired to take one more step...... We need to stop and pray. Pray for those hurting. Pray for those breathing their last breaths. Pray that we will never, never take our breaths for granted. Pray that we can see the blessings in the busy., in the "not fair". That we will never be to busy, too selfish to appreciate God's grace in this crazy place. We are blessed. We are valued. We are loved. Above all else, HE will NEVER leave us or forsake us. Never.   "I love, I love, I love, I love the way you hold me I love, I lo...

The Best Job in the World.  I'm a special needs mom. I know what stomach juices drained right from the stomach smell like. I know how to change a feeding port right out of a belly. I've "slept" in firm backed chairs by hospital beds and told Dr.s they are wrong. I've witnessed the undeniable miracle of a baby that "won't" turning into a baby that does and does again. I've seen pain, I've planned goodbyes and thanked God they were only plans..... All of these things and many more are things I never imagined  I would do. Frankly, if you would have told me this is what life held 10 years ago....I would have run for the hills. There is no way to know until you experience it the unexplainable blessings and deep joy being a mom of a miracle can really bring.  This job is not for the faint of heart. Sometimes it feels like a deep, lonely pit. One that just goes deeper with no end in sight.....Honestly, even though we are approaching year numb...

Case is our fourth child. He has 3 sisters. At 22 weeks pregnant I had a routine ultrasound. The tech seemed calm, ordinary. She said we were having another girl. We named her Parker. "She" was healthy. Typical. Fine. A week or two after that "normal" ultrasound we got a call. There was a spot on our "baby girl's" heart and one on "her" kidney. Not a big deal. At about 25 weeks of pregnancy, we had a second level sonogram about an hour away from our home.  I was told our baby would be different. Very different. It's limbs were way behind in growth. It had heart problems, kidney problems, deformities and was small. Very small. The doctor strongly suspected Down syndrome or Trisomy. He did an amnio. I cried. He told me this was not my fault. I was doing everything I could. The baby was just made different and we needed to see how bad all of this really was.... Two and a half weeks later, I got a call. I was there, in that hotel. On ...