A Rare Skin Disorder?

I should be sleeping right now.  I have been going 24/7 since before the holidays began and am now fighting a cold. Tomorrow Gabby will have her well visit check up. Not looking forward to my little one getting shots nor the early morning. I am still awake tonight because my sweet soon to be 11 year old daughter has a family tree project that is due tomorrow and we were up 'til 11:30 together. The way my life works is you do what ya gotta do....so I needed to polish a little bit of her project, put a load of laundry in, and then pump for my little Gabby. As I sat pumping I came across an announcement for Rare Disease Day that is coming up
 28th. I am ashamed that I never knew of such a day. Never knew of Epilepsy Awareness month either until my oldest daughter was diagnosed in 2008.

"It's a rare skin disorder. Only 1 in such-in-such huge number (my interpretation) ever get this condition." That is what my husband and I were told over and over again after Gabriella came into this world. Rare. Why? How? Seriously? We have 6 other children and she is hit with a rare skin condition. Really? Incredibly hard to believe. I didn't want to believe & until about 3 weeks of having her home, 5 weeks after she was born, did I accept the fact that this is a life long condition. Yup, I was standing over her at her changing table where I spent many hours applying aquaphor-caring for her skin the best I could. Learning every day what would work and praying for something to work. We began to see what we thought was a cycle. Gabby's skin would seem to get worse every end of the month. So, when I was gently painting aquaphor on her that night my hand unknowingly went over a blister which broke. My heart sank and I then realized she isn't going to get better. This isn't some freak infection. It is the real deal, a "rare" deal, that Gabby has been given.

As February 28th approaches I will remember those who are suffering even more so than our Gabby with this awful skin disorder. There are many rare diseases that people all around us are living with. Let's take time to care.

 I now need to dry the load that was washed and get to bed! Its 2:30am!

Happy First Birthday Sweet One!

                      

Dearest Gabby on your First Birthday! 

Happy Birthday our sweet Gabriella Grace. It is amazing that this day is approaching. You came into this world on the 9th of January, a day which should have been a day of celebration. Instead (God's plan threw us on our knees) your Dad & I with heads low were praying non stop for you. The details of your birth day have been etched out and you know by now the pain you suffered lying in the NICU bandaged from head to toe. Although I am reminded that you will have no memory of the pain you felt. I will never ever forget the torment I knew you were dealing with only hours old. You definitely developed a strong set of lungs! Those very first moments of seeing you (I loved you way before I saw you and haven't wanted you out of my sight since) I knew something wasn't right. Honestly, in my gut I knew something wasn't right before I saw you. Life is funny-God only lets us understand His purpose when the time is right- I mean, even though I had a strong feeling that something was not right, there was absolutely nothing I could do about it but give my fears and concerns to God. Literally- that is it. After hours which turned into days which turned into weeks of worry, disbelief, fear, and yes, even anger we were able to take you home. We set you up in our room-our little NICU place for you. You were not leaving my sight! You slept beside me this entire year. If it wasn't so dangerous you would have been in my bed with me. That is one thing I could not do with you for a long period of time because you became too hot & uncomfortable. Early on was very tricky. A delicate balance of just the right touch but not too much. We learned as we went & looked for others who had gone down this road  with a newborn whose skin was "broke". (You are not defined by your skin, Gabby, you will always be MORE than that.) I prayed for wisdom and asked God to give me answers to all the questions we were drowning in. Thank you, Lord, for my nursing background. Without the nursing education the dressing changes would have been much more difficult. God gave us what we needed when we needed it. Whether it was peace, friendship, support, or a day without blisters. God gave us you. One of my best gifts ever! You have been the sweetest most precious gift I could ever have asked for. I know as you grow I will be growing right along with you. Despite all of your discomfort (much more than I have ever had myself) you have been a delight to watch this past year. A true delight for all of us-all your siblings are ga-ga over you. You brighten up our days, Gabby. God has something so special planned for you-He had a plan for you before you were even born. He formed you in my womb perfectly in His image. Perfect for His plan. You are perfect. No matter what my human self wishes for you deep down-No matter what- You were created perfectly to carry out the plan of the most High. We all are. And I think that is one thing I am learning from your short little life so far. No matter are short comings or what the other person has or doesn't have, we were all created to give Him glory. We are all perfect images made by the great creator for His purpose. That is all we need to understand the importance of our existence. So, see my little one. You (God through you) are already carrying out His plan. I know it is only your first birthday but my prayer for you always as you have many more birthdays is that you understand that you are not broken in His eyes. That your outlook on life always be a positive one. That you use what others see as a disability for His glory. You are not defined by your skin you are much more than that my little Gabby! I love you dearly and look forward to celebrating your first birthday with you in my arms! 

Thank you, Lord, for your patience with me. For your forgiveness when at times I questioned your design. May Gabby grow in grace and confidence. Confidence in her almighty Creator. Amen.

I love you My Gabby.
Love, Hugs & Kisses,
Mommy