Cloudy with the Chance of Sun........

     A.'s diagnosis has caused a traffic jam of sorts. We are grateful for a name, an answer, validation to everything we have said over the last 6 years. But, as you can imagine, I have been on the phone and internet researching all I can about A.'s diagnosis and what it means long term for her, short term for our family and long term for the other girls. My head is spinning with questions that I still have, new questions, test names, doctors names and numbers and all the paperwork that goes along with this journey. Then there is Obamacare that is gonna play a part in this all, though I am still unclear how big or small. *sigh*

     It's a lot for this mama to take in while trying to get the every day stuff done and growing a baby! So, I'm trying to get more sleep, and remember to eat well something when I get hungry. I am not stressing about the things that aren't getting done and I'm trying to make the important things a priority around here (food, Scripture, Prayer, some school and minimal cleaning).

     I don't have anything profound to share, except that us Mama's gotta do what we gotta do- even when it's not the ideal whether ideal for us or someone else. I don't have it all together, we aren't doing Art every day nor are we checking off every box on our weekly plan. Our baseboards are dirty and I can't remember the last time I dusted.  We're just getting thru life, the best we can..... together, for His glory. We are taking this diagnosis and trying to create a new normal where it doesn't define us, but has it's own place. We are learning life skills- the skills to keep going even when we have a ton of questions and not many answers on the horizon. We are pursuing endurance to continue on and give Him the Glory even when we don't have clarity. We are remembering gratitude for all the blessings He has given us, even in the midst of the clouds of uncertainty.
 
      I named this blog Faith in the Shade, because in this journey He has called me to I have found the most faith, the most assurances, the most comfort in those times of shade; whether that shade be a storm of illness or a cloudy day of unknowns. He has been faithful to call me to Him and provide rest and for that I am most grateful. But in these storms of life that we never plan for ourselves or expect, we have a choice. Sit and cry it out (tears are welcome, a tantrum is not), or shed a tear or two and just get thru...... on His strength, which is made perfect in our weakness (2 Corinthians 12:9).

     There is a sunny day to come Mama's, we just can't always see how bright those days are until we experience some cloudy ones. We sure do appreciate those sunny days more when we've been thru the storm. So fight for for your faith, even in the shade. Seek Him. And, just remember that you don't have to have it 'all together' to come to Him for refuge......

A Diagnosis....

 Dear Reader,

         When our second daughter was born, we knew something was wrong. We searched and searched for a doctor to take us seriously, to really examine all her symptoms (from multiple systems) and someone who wanted to help. She was hurting and we didn't have any course of action that really relieved any of it. It has been a long 6 years. In this journey we have seen 29 doctors from a variety of fields, have tried every type of cream/lotion out there, and have tried multiple diets. It has been a long 6 years.

     In the past 3 months one of our doctors suggested we get some further blood work done, just to see. We went to our pediatrician and asked for the testing. He consulted with a geneticist and she wanted to see A. Long story short, we went and saw her (she was fabulous!), and she suggested we do go ahead with blood work but also see one more dermatologist to answer some questions she had (and to get a skin biopsy that we have been asking for for 3+ years). We were hesitant, but we went to the Dermatologist. He was great as well! He really looked A. over, listened to all we have tried and understood we were not coming to him for another steroid cream. He sat back, thought for a moment and went on to explain that he was fairly certain he knew what A. had. He agreed we needed to do a skin biopsy (that would confirm his suspected diagnosis), and did one right there in the office. The results came back in 2 weeks and he was correct. We had a diagnosis. 

  

            She has a genetic skin disease called Icthyosis Vulgaris. It is not curable, nor will she outgrow it.

     But, we have a name. In a matter of a 30 minute office visit, and one test later we have an answer that 28 other doctors couldn't (and wouldn't look for in some cases) find. We praise God for His mercy in allowing us to have a clear answer, yet pray that He graces us with the strength, and grace to carry on in this next segment of our journey. 

    We go back to the Dermatologist in 10 days  for the followup where we can ask all the questions we have, but we wanted to share with you where we were at. We are also waiting for more blood work to come back. We will be sending a letter to every doctor we saw with this diagnosis and A.'s picture. We hope that thru this letter, they (the doctors) will take more time with their patients (and their parents) and listen to what the parents' concerns are. Parents are the experts of their children.

   

 We would appreciate your prayers for A. and us as we navigate this new journey. We don't have a clear picture of what all it will entail. Although, please know that I have done my research on this and have a list a mile long of questions for the doctor. In saying that, please refrain from sharing suggestions or rebukes on what we should do or should have done. This is where we are, and we are praying for the Lord for guidance. We do just want the best for our sweet A.