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