A Very Special Case.

  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 ...

  You are good enough.  Hey, you....Yeah you, the mom with regret written all over your face.  You are good enough. You are strong enough. You are pretty enough. You are doing a good job. At the end of the day, when you're laying in bed and through your brain is running all the things you've done wrong. You're thinking about your unorganized sock drawers and dirty toilets. You're thinking about the home work you forgot to sign last week resulting in your daughter getting a "warning" (in other words, her mom sucks and she suffers)...About all the things you could have and should have done but didn't have the time, the energy, the brain space or the strength....  At that moment remember how loved you are. How forgiven you are. How you, yeah you were made in Christ's image and you are a child of the one true King. Don't listen to the voice that tells you otherwise. With all that you are and all that you have, believe that you indeed ARE good...

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” —Matthew 6:34    Dear worry, I'm over you. You exhaust me. I'm tired of your constant need for attention. You started to push your presence hard into by being over three years ago when I heard words like, "Prepare yourself to bury your son" and "I just don't know what to tell you....your child was just made wrong...". It was then you started whispering no, shouting, "NOTHING IS EVER GOING TO BE OKAY. Don't you see, the Dr.s don't even think your baby has a chance!" Well worry, you were wrong. My baby is a fighter and my God is sovereign. He doesn't make my life perfect because perfect is boring and perfect requires no dependence on Him. You, worry, are getting old and I'm breaking up with you. Don't tag along when the Drs give my son his 30th diagnosis. I don't need you when I open hospital bi...

  Being the mom to a special needs, medically fragile miracle is like walking through the woods with a blind fold on. Most of his doctors are right beside you...blindfolds on too. Helping you find your way and making this place a safe home for your child. Other doctors ran away when they were handed a blindfold..."It's just too much. Too complicated.....too scary" they'll say. "Good luck!" They'll say and run away... Then there are the other miracle momma's walking behind you. Some have special angles and have been forced to do what you fear most, bury their miracle. Still, behind you they'll stay because together you are a community. You need each other and aren't afraid of a little blindfold... Sometimes you'll feel lost, bruised and broken...but you'll keep walking...As you walk through the dark, scary woods, you'll hold tight the hand of your child and in your other hand is a machete, cutting down the obstacles in your wa...

Dear beautiful child without a voice, I will be your voice. I will not back down, I will not give up, until my last breath...I will fight for you. I will not let a man in a suit, behind a desk tell me what is "medically necessary" for you. He has not cried for you, slept in a chair in the hospital for you or fought for you. He does not know your pain nor has he seen your strength and with all due respect, I don't think he'd care to but I have...and I will continue to because i love you with every fiber of my being. For the rest of my life I will fight for your needs to be met because the sad reality is that children as special as you don't always get treated as the kings and queens that they are. It's true, dear boy and that's why they were given mommies like yours. To be their voice, to fight for meds and treatments and beds....Don't worry sweet prince, I will do all that I can for as long as I can so that your sweet, soft voice can be heard. Ev...

One of Case's fans asked a few days ago about what my biggest fear for Case's future is. Honestly, I don't think about it much. I've tried since pre-birth to take one day at a time but I know what it is. My biggest fear for my medically complex, special needs son is that he will feel left out, "defective". I will always be beside him, cheering him on...Telling him that different isn't defective. Different is beautiful!!  Dear beautiful baby, After you were born, God broke the mold. No, really. There is no one else like you, anywhere. You were made different. Yeah, different but that's a GOOD thing. You are not weird or odd.  In fact, your differences make you even more beautiful than I ever could have imagined. Not only on the outside but on the inside too. When God put you together he placed your parts with great care and made them super special, kind of like Spider-Man's web shooting wrists and Superman's extra strong arms...You ...

Almost 3 years ago my life changed. I stepped into a world that was no longer comfortable. A world that can't be fixed by a prayer. Where asking for healing doesn't always mean the pain or the sickness goes away....It was in September, 2010 when I saw a perfectly beautiful unborn baby full of deformities and disease before he even took his first breath. I was told over and over and over again that my perfect baby was made wrong. That the child inside of me was deformed and incomparable with life...(I hate those words "incompatible with life", they make my stomach turn...I don't think they should be formed into a sentence....If a child is born alive then that alone is a child "compatible" with life.....Right?!) During the days leading up to the birth of Case I belonged to a "high risk pregnancy" board online. I read a post of a young mother who aborted her daughter because the Dr.s told her of the horrible things this girl was up against.....

Yesterday I needed to get my picture taken for my drivers licensee and when I looked down at my old license, I saw a young girl who decided she would hold onto her organs when she went on to heaven....... 4 years ago I was living in a different world. A would where The Children's hospital was just another hospital I've heard of and backpacks were for books. 4 years ago I had 3 healthy babies and terminal sickness was something I rarely thought about. 4 years ago when I got my last drivers license picture, I opted out of organ donation because I didn't want my organs "eyed up" and I didn't know I'd ever be living in a world that children die waiting for the gift of life. 4 years ago, I never dreamed I'd love a short, one kidneyed, webbed toes little man with all of my heart and someday, when I do pass I will leave my organs behind and I encourage you to too. Because, some day in 4 years or 14 it could be your loved one dying for the gift of life. ...

*Warning: This post starts out whiny. So, beware. This 28 year old woman is about to throw a small tantrum... For the first time in awhile I felt fearful. I was really hoping for a break. For all of the chaos to stop and things to just be "normal" for awhile. I've been told it gets easier, that things slow down in this special needs, medically complex world but so far I've seen none of the sort. When we got Case's CAT scan results Monday, I saw real concern on the surgeon 's face. It is a face I will not forget and is burned in my brain with the other faces of fear and sorrow from his previous Dr.s. You see, in this world you learn that Dr.s don't always have answers and their hearts are as big as their brains. They really care for my boy and are doing everything in their power to help him, to make him better but their power only reaches so far. It's when things get tough that I hear God the loudest...He doesn't promise painlessness or pe...

"Well I tried to be everything I need But a broken heart was all that I achieved Still I don't understand Why it's taken me so long to know You never change Your love remains Oh God I'm holding onto you" When nothing stays the same. When tomorrow is always different than I've planed, I'm holding on to you. Oh God, it's out of control. I never know what Case's Dr.s are going to say or what his insurance is going to deny next but I know you are near. You've picked me for a very special job and everyday I find myself needing to let go...remembering that You know better than me. I never could have planed all this. I never would have planned all this but it's because I never knew how full my heart would be once I became this mommy you've called (more like drug me) to be. I  am thankful. I am humble. I will fail more than I succeed. To You be all the glory. Without you, I'd be nothing. Thank You for being by my side for ...

It's just..well..what I do.  When I go to the dentist or to my Dr. I naturally get asked what I do. I tell them I stay home with four kids, one has special needs. The next question is, "What all is wrong with him?" I don't usually have all day so I give them he short list...the really short list. I usually get blank stares and "I'm sorrys". It's those moments that reality slaps me in the face. That I remember that 2 1/2 year olds are usually starting to get independent. It's about this time that they sleep through the night and you can just put a diaper in your purse and leave the big, bulky bag at home. I remember that beach trips and outings were less trouble when the girls were 2 1/2. Less preparation...less work. I watch as my Dr looks concerned at me and says, "How do you do it?". I never know how to answer that. I don't have super powers. I've never been very patient and I'm grumpy on too little sleep. I just do it...

With the birth of a medically complex, disabled, special needs child comes an extra does of love. Not for that child (you love him as much as your other children) but FROM that child. From deep inside his soul.  Love covers you. Love gives you the strength to fight the long fight and year, after year, love stays. You feel love for the homeless-looking man that stops to admire your special gift. You feel love for the countless Dr.s, specialists, therapists and nurses that save and enhance your special child's life. You love the children that lost their battles and the momma's that morn their loss. You love the children in the mist of their battles.You love those you never met that love, encourage and support you on this rocky road. You're in a whole new world. A world that use to terrify you. You continually remind yourself that worry and frustration kill, steal and destroy but love covers a multitude of sins. You will be wronged. Lied to. Sinned against. Not e...