LivEBrave

I am proud to share with you the documentary that our son, Andrew, produced for his senior college project.  Please take the time to watch the video and then share it with others.  We want to spread the word about EB and encourage others to, "Trust God and Don't be Afraid".  Congratulations to Andrew on the awards won, you did a wonderful job portraying AJ's life.

LivEBrave

Hopefully I can give you a full family update in the coming weeks.

Barbara

There Is No Pain In Heaven

We just returned home from the hospital and we are so thankful to be home. AJ developed another serious infection on his foot (He had the same infection a month ago; different foot this time).  He was in so much pain that his body shook and he kept screaming.  He had a temp, had not walked in 24 hours and I knew the wound was not going to heal without help.  The clinic was busy so the ER was our only choice. Thankfully it was not a long wait before they got him in.

AJ was a real trooper even when the nurse (that acted like she knew all about EB) tore the skin off his foot. You can imagine how much pain he was in.  He is feeling better now with some good pain meds.  The antibiotic should do its job in 24 hours, otherwise we are inpatient.  AJ was so sweet when we left, he told the nurse that he wanted to go to heaven; he told her there is no pain there.  The nurse looked pretty uncomfortable with that statement.  We asked him to stick around a while more and that he would be feeling better soon.

I'm so glad heaven is real and AJ knows that someday Jesus will take him there.  We may be home but it's only our temporary home.  Heaven is our real home and it's good to remember that.

We appreciate your prayers for AJ, that this infection would clear quickly.

Barbara and AJ

Happy Birthday AJ!

Today we celebrated AJ's sixth birthday.  Oh how blessed we are; that God has given us these years with AJ.  We pray that God will give AJ many more years but we know that life with EB is full of unknowns (hey we know life without EB is filled with enough unknowns).  Today was hard for AJ in that he had much more pain than usual.  I'm not sure why it's worse today but it just is.  AJ did enjoy his Angry Bird cake and his friend, Briella, and her parents celebrated with us.

As I thank God for AJ's life tonight, I also cry for a friend, Steve Stearns.  Steve and his wife Tammi were friends that we met through our EB family.  Tammy passed away this past year, suddenly and without warning.  She left behind her preschool daughter, Chloe, and baby Liam, that was born with EB.  Tonight little Liam passed away. Steve and Chloe are left behind with Mom and baby brother in heaven.  My heart breaks for them.  You can read more about Liam and his family here: Liam's Lambs

Life is unpredictable but God is our sure and solid rock.  How thankful I am that we have Him to cling to. Please pray for Steve and his daughter Chloe as they mourn the loss of their little Liam.

Barbara

I'll Take It!

There are some things in life that you wait a long time for.  Today I had a glimpse of the work God is doing in my daughter’s life. 

When children have suffered abuse and neglect they don’t see new adoptive parents as the blessing they have been waiting for.  Instead they visualize you as another enemy that needs to be neutralized.  That may seem like tough words to describe my kids but it’s fair to say, some of my kids have been really tough.

You give and give and give…then you give some more; all the time receiving nothing in return.  Actually you do receive something.  You are on the receiving end of swearing, hitting, tantrums and full blown attempts to push you into a state of emotional collapse.  Add to that, false allegations of abuse that your child makes to child protective services (their attempt at neutralizing you).  Then add their suicidal and homicidal attempts that make the professionals in their lives wonder what you did to cause their distress.  Top it off with prosecutors, judges, jails and locked prison cells; achievements mothers don’t dream of. Instead you hold onto the knowledge that God has a plan and a purpose even when the journey seems like a walk into darkness.

It wasn’t always that way.  I remember with fondness the day my daughter joined our family.  Spitfire would be an understatement of her personality.  I was warned with subtle comments from the social worker.  “She is quite the Diva and I’m so glad your husband is good at home repairs!”   Her first bedtime consisted of her destroying her room that I had so carefully decorated and listening to her scream, “You will never be my mother!”  I, wise woman that I was, banged my head on the door frame asking God, “What have we done?” 

Years passed.  My little one moved on.  On to residential facilities, failed treatment homes, hospitals, respite homes, group homes, the list goes on.  Born an addict, to an addict, her first four years consisted of living in twelve foster homes, many of those abusive.  I was able to actively be her Mom for the next seven years.   I say actively because those were the only years she was able to live at home where we could show her she was loved; precious to God and to us. 

Today's letter to my daughter,

      Honey, five years have passed and there have been many, many more placements for you.  Today was a day that I will remember as fondly as the day you arrived in our home.  Today you sit in a jail cell: it’s not a surprise that you are there.  We had a phone conversation and I was surprised by your tone of voice.  I have not heard you speak in a calm tone for years.  Your words were measured and filled with tears; you asked me to be your Mom today.  You acknowledged the pain and anger you brought into our home. You thanked me for never giving up on you.  You asked me to be your Mom today.  Did I say that already? Yes!  You also said, "I love you"

     Wow, I know God has walked with you when we could not.  We have prayed for you and will continue to pray that God will complete His perfect work in you.  Today is a day to rejoice.  I know tomorrow will have its challenges but for today, “I’ll take it”  I’ll take your invitation to be your Mom and with God’s help I’ll be just the Mom you need. 

I Love You too Honey,

Mom

Galatians 6:9-10

And let us not grow weary of doing good, for in due season we will reap, if we do not give up.  So then, as we have opportunity, let us do good to everyone, and especially to those who are of the household of faith. 

To my readers; Don’t give up…God is at work…even in the darkness.

Barbara

All Saints Day

We live in a day where the lives of the rich and famous are followed in most every newspaper and tabloid.  Today, being All Saints Day, let’s focus on something of greater value; remembering the saints that have gone before us and encouraging those living among us.

 

A Saint is defined as someone who professes faith in Jesus Christ and strives to live as Christ did.  I am thankful for the examples of the Saints that have gone before me and I encourage the Saints living today to remember the words of Hebrews 12:1-2;

“Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.”

Carpe diem,

Barbara

A Final Letter to my Father in Law

Yesterday we said goodbye, but I never really felt we had the chance to say hello. For years I listened to the stories of your life, you touched the hearts of many.

I never knew you during the days of the Resurrection House; the days your charismatic personality and love for God reached out to the hurting and the lost.  You were deeply loved by many.

Time changed things; you changed, everyone changed, some for the better and some for the worse.  It’s all just a part of history now.

We met not long after you had begun a new journey in your life.  You did not want your son to marry me.  There was nothing I could have said or done to meet your approval.  I want to believe that your love for your son and your own personal pain would not allow you to accept me for who I was.

 

You preached surrender to God but you didn't share with me the joy or the love that described you in the past.  I wanted so badly to meet that man, if even for just a day.

You continued to give of your time and money, to strangers.  Your family missed you.  You missed our wedding, the birth and adoption of your grandchildren, the holidays and the birthdays.  You missed knowing the man that your son became.   What a tremendous loss for you.

For the words and actions that hurt so deeply, I forgive you.  I hold no bitterness or anger toward you.

Today I grieve your passing; the passing of my husband’s father.  I grieve the loss that my children never really met you; their grandfather.  I grieve and have hope because even amidst the mistakes and suffering, you knew that you needed a savior.  You knew that it was not by anything you did that you could enter heaven.  You knew that by grace we can become the children of God.  We did not share much but the most important thing we shared was Jesus.

Rest in peace Bun; we will meet again and it will be new and good.  I look forward to saying Hello. 

With love,

Barbara, your Daughter-in Law

National EB Awareness Week

In 2006, the U.S. Senate and Congress declared that the last week of October would become the National Epidermolysis Bullosa Awareness Week.  The purpose in setting this week aside was to:

• Support the goals and ideals of EB awareness week 
• Raise public awareness and understanding of EB.
• Recognize the need for a cure
• Encourage people to support the week through ceremonies and activities to promote awareness
• Foster an understanding of the impact the disorder has on patients and their families

To help you better understand the impact of EB, I would like to share the following video with you.  In it you will see many of AJ's friends that battle EB and those that have not survived the disorder.

We are also excited to share the first children's book, that was recently published, about EB.  In honor of EB we will be donating the book to AJ's elementary school.

Thank you again for the support you provide us.  We are thankful that God has brought AJ into our family and that He has shown us, as the song describes,  

Blessings in Disguise.

I'll close with a picture of our little (Big) blessing.  Maybe someday he will be the doctor instead of the patient.  

Barbara