As we start the new year, I have so many beautiful stories to tell, each one so very special to me. As I get to know so many new families, I am always so humbled by the lessons that I learn; lessons of love, gratitude, faith and hope.
This is Blake, a bright and cheery little guy who is full of personality! Blake was born on March 7, 2011 and was diagnosed with EB Simplex Dowling Meara. EBS-DM one of the most severe types of EB Simplex, and as I have learned each and every case can be and is usually different. Often those with Simplex are “forgotten” because they do not appear as severe as some of the other types of EB, however despite the fact that Simplex is a milder form of EB, it is still very difficult to live with and presents numerous obstacles.
According to www.eb-nurse.org:
“Infants often are born with widespread blisters on the face, body and limbs. Congenital localized absence of skin (also known as aplasia cutis congenita and, historically, as Bart’s syndrome) may be present at birth and usually affects the arms and/or legs. Often, with severely affected infants, parents report the occurrence of as many as 200 blisters per day. The widespread blistering of EBS-DM may lead to serious infection, along with feeding problems and the development of failure to thrive. Death rarely has been reported during infancy.
Blisters occur more frequently the weather is hot and humid. Increased physical and emotional stress also have been reported to cause an increase in blistering. Interestingly, some individuals with EBS-DM have reported an improvement in blistering when they have a fever. Blisters tend to decrease in number and severity for most patients as they grow older..”
Unfortunately, Blake’s blistering is wide spread and requires hours of daily wound care; an incredibly painful process for him. His blistering has not only affected the outside, but it has cause numerous feeding issues. He has been in feeding therapy, but continues to have issues.
In addition to feeding issues, . his feet are severely blistered and yet he walks enduring pain that most of us cannot even imagine without complaining. Blake faces multiple challenges daily as a result of his EB, and despite this, he still enjoys being a little boy and doing the things that a little boy should. He loves to play and laugh…not to mention bugging his little sister and doing everything that she does. It was such an honor to meet him and his family this summer after “meeting” online months earlier. I remember the first time that I saw his big eyes this little pout. There were people everywhere and he was no doubt overwhelmed. He clung to his daddy where he felt safe and loved. However, it did not take him long to find a new little friend and let that little personality shine. I could have watched him and his new little friend Eleanor play for hours, both of them so excited and full of this exuberance! You could tell by watching Blake and how he interacted that he had a very loving little heart and that despite the fact that he suffered the pain of EB he was loved deeply. Tammy, like so many EB moms that I have gotten to know, is truly amazing. You can see the love that she has for Blake in everything that she does and just the way she glows when she holds him. Her connection with him is so apparent and it is truly something that inspires me and the way I parent my own children. When I see the abundant joy of this family I am just in awe. I often find myself taking for granted how easy I really have it. This past holiday season everyone was sick and I remember feeling so defeated and just exhausted. I was frustrated and overwhelmed and relieved that my kids were in bed. Then I sat to write this post and I broke down in tears as I looked at the smiles on Tammy and Josh’s faces. For in their smiles I see the gratitude that they have and the unconditional love that flows freely from them despite the many struggles that they must endure each day. Through this family I am reminded to appreciate the many blessings that I have been given and to love every moment regardless of the situation. Tammy and Josh…it is truly an honor to know you…thank you for allowing me to share Blake with others and for teaching me tremendous lessons in love!
As we enter into this new year, I hope that we can all resolve to love a little more an worry a lot less. That we can be compassionate and caring not only towards those we love, but those we may struggle to love. May we be reminded of the countless blessings that have been bestowed upon us and embrace them, looking beyond our struggles to see the joy.