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

Changing Leaves

The leaves here in MN have changed to a dusky brown with a few yellows left.  The seasons are changing and we can feel winter in the air.  This reminds me of how our lives are filled with change.  Often I feel like I am on a ride where I might prefer to slow down for just a bit.  Just as the wind is whipping the leaves into a cyclone; life can sometimes feel the same.  How good it is that God is constant; He does not change.  We can be assured of his love and provision. God's word is a treasure that I hold fast to.  I can rest in the knowing that God is able to keep what I have committed and I rejoice in knowing that the day of my full redemption is coming.  I am persuaded of that!

I Timothy 1:12 states,

I know whom I have believed and am persuaded that He is able to keep what I have committed to Him until that Day.

While I wait...I'm not so good at waiting...but while I wait, much is happening.  Here are some of the highlights of this past six months;

• AJ graduated from preschool.  It was an exciting day for everyone.
  
  

• Katie graduated from Bethlehem College & Seminary.  We had a great time of celebration at her commencement and we are excitedly watching God's plans unfold in her life.

• We were able to do some traveling this summer, including to our favorite vacation spot in Grand Marais.
  

• We had a Shaw family reunion at our home this summer.  It was so great to be able to visit with each person that came.  
  
  
  
  

• Sadly my father suffered a stroke this summer.  We are thankful for the partial recovery that God has brought and we continue to pray for He and my Mom; daily life is harder for both of them.  Our dependence on God deepens during these experiences that push us beyond what we thought we could bear and God provides the grace to keep moving forward.

• AJ has had an entire 12 months free of hospitalizations.  This is a first for AJ and we are so thankful for God's mercy over him.  He is in the 75% on the growth charts; an uncommon threshold for a child with EB.
  

• AJ began Kindergarten and is loving every minute. He is surrounded by friends and knows he is loved by many
  

• We have a new Granddaughter, Nora Bea Fischer.  She is beautiful and we are so thankful for her.

We have many reasons to celebrate life and along with the changing of the seasons, we sometimes experience sorrow. Scott's father is very close to leaving this earth and meeting his heavenly father.  It is with sorrow and rejoicing that we prepare for this change.  We are so thankful that God is with us every step of the way.

We are excited about the good news we hear from California regarding Arianna.  We are told that the process is again moving along and it is possible that she will be here by Christmas.  I would like to share a story that helps shed some light into her life the past four years.

• It is rare that Arianna has any opportunity to take part in activities outside of the hospital care center where she lives.  Last month, she had the special opportunity to visit a zoo.  It was in the evening that they visited, as she does not handle the heat well.  Her nurse was directing her to look at a zoo animal but Arianna continued to look off in another direction.  Her nurse told her to look in the direction of the animal but Arianna responded by saying, "No, look at this!  It is the moon!  I have never seen the moon before!"

How incredible and how sad.  A little six year old girl having never seen the moon.  We can't wait to show her the many, many things that God has for her; the adventures to experience and the love of a family. Please continue to pray for us, that we will soon be united together.  We do have a financial need regarding Arianna's placement.  Due to the delays in her adoption, we recently needed to update our adoption/foster care home study.  This was an unexpected $900 cost and if anyone would like to contribute, we welcome the assistance to Arianna's adoption fund.  Donations can be mailed to: Scott and Barbara Fischer, 902 Beachwood Court NE, Stewartville, MN  55976

I encourage you to keep looking for the beauty that God provides during the changing of seasons in our lives. Last evening I walked around my neighborhood while the wind was blowing and a light rain was coming down.  The weather matched my mood to a certain extent.  I shared my sorrow with the Lord and then turned around to see the most beautiful tree.  It was a vibrant red against the backdrop of an emerging darkness.  I thought the beautiful colors of the season were gone but I was wrong.  Here stood this beautiful tree; a reminder of God's beauty even in the darkness.  

A Time for Everything       Ecclesiastes 3  (English Standard Version ESV)

 For everything there is a season, and a time for every matter under heaven: 

a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
 a time to kill, and a time to heal;
a time to break down, and a time to build up;
 a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
 a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
 a time to seek, and a time to lose;
a time to keep, and a time to cast away;
 a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
 a time to love, and a time to hate;
a time for war, and a time for peace.

What gain has the worker from his toil?  I have seen the business that God has given to the children of man to be busy with.  He has made everything beautiful in its time. Also, he has put eternity into man's heart, yet so that he cannot find out what God has done from the beginning to the end.  I perceived that there is nothing better for them than to be joyful and to do good as long as they live; also that everyone should eat and drink and take pleasure in all his toil—this is God's gift to man.

Thanks again for reading about our journey,

Barbara

Arianna

Hello Everyone,

So many times I have been meaning to post but life has been busy.  AJ has not been hospitalized since last fall and we are so thankful for his good health.  He has had one dilatation of his throat but he is already in need of another.  We keep plugging away day by day.

I have lots of good updates to share but today I have something more important.  We have spent much of the last eight months preparing for the adoption of our new daughter, Arianna.  She is a sweet treasure that lives with Spinal Muscular Atrophy, type 2.  She is ventilator dependent but is still quite the chatterbox.

Arianna's room is ready and waiting for her and so is her family.  As final preparations were being made for her arrival, Arianna's social worker quit his job and the county of San Diego notified us that they were no longer planning to place Arianna in any adoptive home.

Every child deserves a family and we will advocate for Arianna the best we can.  The support of the SMA community has been overwhelming.  Thanks to them, they started a petition to bring Arianna home.

First, I would like to share with you the video San Diego child services made when they were searching for a family for Arianna.  This was before she had a tracheotomy and placed on a ventilator.   Arianna's video

Second, I would like to share the petition at Change.org.  Please consider signing the petition to allow Arianna a home.  All you have to do is click on this link and follow the simple directions:  Petition to allow Arianna a family

Thank you so much for you support.  We believe God has a plan for Arianna and we will continue to advocate for her.

Many thanks,

Scott and Barbara

Go Twins!

Thanks to HopeKids, we were able to attend a Twins game last night.  It was AJ's first game and he loved it. The Twins lost but AJ really got into the cheering.  At the end of the game he yelled, "Way to go Orange (Miami Marlins), You Lose Blue (Twins).  He loved the opportunity to play with the other children that were so accepting of his bandages.  We were thrilled about the warmth that the suite provided - still too cold for us to sit out in the Minnesota weather and watch a ball game.  AJ stuffed himself with his favorite food; cotton candy.  He ate almost an entire bag and never got sick.  We didn't arrive home until 1:30 am but it was so worth it!

Thank you HopeKids

From all the Fischers

It's Good to Remember

Today is a good day.  

It’s a good day to remember.

Rachel, you would be 28 this year 

if you were still with us. 

I wonder what you are doing today? I wonder what you would be doing if you were still here?

I am wise enough to understand that you are in a lot better place.  

I wouldn't wish for you to come back. 

I want you to know that I still remember you. 

I really don’t cry anymore. 

I hope that doesn't bother you.

Jesus really has turned my sorrow into joy.  

I wish you could have met your

 sisters and brothers. 

I wish we could have spent more time together. 

Nine months of a pregnancy was not enough. 

I remember what it was like losing you. 

I remember being numb and seeing all the other beautiful babies that were still alive; 

It was a sad reminder that I couldn't have my firstborn daughter. 

Since your birth and death, I have heard of other babies that have died from your syndrome. 

Potter’s Syndrome is still fatal in every case. 

Some families suffer the loss of more than one child from this disorder.  I can’t imagine that. 

It was so difficult to lose you.

I wish I could visit the cemetery today

but it is too far away.

I remember the sadness 

but today my heart is filled with hope. 

On your tombstone are two Bible verses.  They read;

1 Thessalonians 4:16-17  

For the Lord himself shall descend from heaven with a shout, with the voice of the archangel, and with the trump of God: and the dead in Christ shall rise first: Then we which are alive and remain shall be caught up together with them in the clouds, to meet the Lord in the air: and so shall we ever be with the Lord.

Rachel, these verses are why I can still live; 

without you.  

God has filled my heart with hope

 and our day is coming.  

A day where we will not have to say goodbye again.  A day where we can share our lives together.  

We have eternity Rachel and some days I can’t wait for our lives together, to begin again. 

I love you Rachel.  

I don’t know if you celebrate birthdays in heaven but I am remembering.  

Remembering your short life, remembering losing you and remembering that we have a promise from our Heavenly Father.

I'm listening for the trumpet Rachel.  

We will meet the Lord, together.  

I love you Honey.  

I'm crying now.

They are peaceful tears, 

filled with love.

Happy Birthday!

Mom

A Tribute to God's Great Design for Families

This blog post was written by our daughter Katie in honor of the 40th anniversary of Roe vs Wade.  I hope it blesses you as much as it did us.

Barbara

Katie's post

How do I feel about my parents adopting, particularly in light of the 40^th anniversary of Roe vs. Wade?

In the most simplest of terms: It over joys me! It relentlessly paints a picture before my eyes day after day that God delights in life of every kind. 

Perusing twitter this morning I continually came across the following question: “How pro-life are you?” One simple look at my family and this question quickly seems to be rhetorical – its answer staring one in the face as 13 children glance back at you from the rows of my ethnically, culturally, and racially diverse family.  Not only did my parents choose life for their own four children that God opened my mother’s womb for but they chose life for nine other children, selflessly opening their homes, hearts, and lives to care for children that our society deems ‘unwanted’ and ‘dispensable’.

In 1 Corinthians 12 Paul tells us “On the contrary, the parts of the body that seem to be weaker are indispensable, and on those parts of the body that we think less honorable we bestow the greater honor…”  

That child with FASD: valuable to God! That young girl struggling with bipolar: indispensable to God’s economy!  The little boy in a wheel chair: he’s bestowed with honor!  Each and every one of them is valuable, imaging our Creator.

Years ago, before the likes of me, my parents saw these realities and delighted their hearts in the reality that God is the giver of life. He alone gives life to everything. They chose to honor God as Creator and build a family through both natural birth and adoption.  Through this they declare day after day that life is valuable and that God is good.  More importantly, it reminds me of a life-giving reality – the reality that I too have been adopted into the most glorious family.  That I am a daughter of all sovereign ruler of the universe and that he is my Father. I have been adopted into the family of God and there my identity is rooted and my hope is steadfast.

So thank-you Mom and Dad. Thank-you for choosing life. Not only for me but for all of your children.  You have imaged well for me what it means to value life and what it means to love the Lord with all your heart, mind, soul, and strength. I see and know that it isn’t always easy to choose life but God has been faithful to you through it all.

And today seemed like a really good day to say that.  In light of those 50 million children who have not been given life in the past 40 years, the reality that I (and my 12 siblings) have been given life – delights me beyond words.

Praise God for parents who understand the value of life!

Praying for Evan

Please pray for Evan, his Mom and sisters.  Evan has Junctional EB, a different form than AJ and also very serious.

Here is a picture of him this morning.

Evan had symptoms of an airway that was scarring shut from EB. He went into the hospital today to have it checked. Evan's Mom was struggling with the decision to do an elective tracheotomy.  She shared with me yesterday that she was concerned about the loss of his speech if he had a trach. She shared that Even loves to sing and talk. If his upper airway closed and he had a tracheotomy  he would have no way to get air over his vocal cords and he would lose the ability to speak or sing.

I am so thankful that Evan is still here with his family. Before the doctors even got started into the procedure today, his airway closed completely and they did an emergency tracheotomy to save his life. His airway could have closed before they arrived at the hospital. Instead it happened in the operating room.

Evan needs our prayers.  Prayers to handle the many changes he will need to adjust to.  I can't imagine waking up with the inability to speak; especially if you are only four years old.  Pray for peace, healing and an that an alternative form of communication be found for him quickly.

Thank you so much for following our blog and for praying for these little ones with EB.

Barbara

Dad, Do you Pray Everyday?

AJ:  (In all seriousness) Dad, do you pray everyday?

Dad:  Yes, AJ.

AJ:  (adamantly) You should stop!

Dad:  (concerned) But I want to pray

AJ:  (Sad) If you pray you are going to get really small.

Dad...confused

Mom:  (laughing)  AJ did you learn the song about reading the bible everyday and you will grow, grow, grow?

AJ:  (adamant again) No Mom, if you read your bible and pray everyday you will shrink, shrink, shrink!

Mom tells Dad the words of an old song
(he must have learned it in church last Sunday):

Read your Bible, pray everyday 

and you'll grow, grow, grow.

Don't read your Bible or pray everyday 

and you'll shrink, shrink, shrink,

I think AJ thought the song went:

Don't read your Bible, pray everyday

 or you'll shrink, shrink, shrink.

I just love this kid!

Barbara

A Riddle to start the New Year

AJ shared a riddle with me today.

Here is AJ's Riddle

I have a little ball in my brain. 

 It falls out of my brain into my mouth.  

When I eat something the little ball gets stuck.

When I eat ice cream, 

the ball freezes and goes back into my brain.

  I like to eat ice cream;  

It makes the ball go back in my brain.

What is he talking about?

The answer to the riddle?

My guess?

A stricture in his esophagus.  

Before he told me the riddle, he said that I need to call the doctor so that we could visit her and she can check him out. After he shared his riddle I told him that I think it is a stricture in his Esophagus.  He did not want to hear my answer. He quickly said that the ball is gone and he is fine now.  I asked him if he was afraid and if that is why the ball is gone. He said, "Yes, a little bit."  I told him that they can look for the little ball by drinking some medicine while they take pictures. He wasn't too happy about that either.

I hope to go longer before we actually do another dilatation   I am aware that he usually doesn't make it a year without one but I would like to go at least a year, if possible.  If my memory is correct, it was last February that he went in.  I know the doctor wants to do the dilatation without the test first.  She feels since he will always need dilatations; why bother to put him through an extra test?  I'm unsure about this plan because I don't want to put him through the procedure until it is absolutely necessary.  Maybe, in time, I will become more confident as AJ continues to share his riddles.

Happy New Year!

Barbara