This world is not our home...

Today our friend Amber left this world.  As her Mom stated, "Amber's life has finally begun."  Amber was 11 years old and had RDEB.  We met her at the EB conference last year.  Amber knew the Lord and her family has the assurance that she is with Jesus.  Please pray for them as they adjust to life without her.

Philippians 3:20-21 (Today's New International Version, 2005)

But our citizenship is in heaven.  And we eagerly await a Savior from there, the Lord Jesus Christ, who by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be 

like his glorious body.

Goodbye Amber, but only for a time; we will meet again.

Barbara

Whom do we honor?

Mother's Day always brings many mixed feelings at our home.  Some of our children have had many mothers and it get confusing for them.  Exactly whom do we honor?  I personally choose to honor all of them.

• Birth Mothers;  Were it not for them I would not have had the opportunity to experience the joys and sorrows of parenting my adopted children.    I know their birth mothers all lost a treasured child. Some may have not realized just how treasured their children were until they were gone. 
• Foster Mothers;  They provided a safe home where my children could stay until a permanent home could be found.  
• Adoptive Mothers;  They traveled to foreign lands to reach out and help an orphaned child.  Their hope was for a, "happy ever after" ending and it just didn't work out that way.  Today I choose to remember their loss as it ultimately became my blessing.  

Today is a day I especially pray for AJ's birth mother.  She holds a very dear place in my heart.  She went against what most of society would do in a very difficult situation.  She chose to continue with an unplanned pregnancy.  She did not blame her unborn child for the wrong that had been done instead she allowed AJ to live.  I know she suffered in silence; keeping her pregnancy a secret that is still hidden from all that know her.  She expected to feel a sense of relief after his birth but instead was faced with AJ's diagnosis of EB and the knowledge that she was a carrier of the disorder.  She is in our prayers that she would experience the fullness of the gospel in her life.

When people ask to pray for AJ, I often ask them instead to pray for his birth mother because:

Life with EB is possible with Christ.  

Life without Christ is simply unbearable.

So thank you to all of the mothers in my children's lives.  Your sacrifices made it possible for me to celebrate mothers day today.

I Samuel 1:27-28 (English Standard Version)

For this child I prayed and the Lord has granted me 

my petition that I made to him.  Therefore I have lent him to

the Lord.  As long as he lives, he is lent to the Lord.  

May we recognize that our children are gifts that belong to the Lord.  May we willingly place them into his care.

Happy Mother's Day,

Barbara

David vs Goliath

It seems that just as I finish one thing; another need arises. That has been the story of the month.  I did get good news today.  Last fall our daughter had major cuts to her disability services.  This winter we had a judicial hearing to appeal those losses as we believed that the law had not been followed in assessing her need for services.  We finally got word today that we won and services will be reinstated.  We will now have two months of services and guess what - time to have her assessed again.   We are very thankful for a decision in her favor.  Then this afternoon we were threatened with with loss of services for another child.  In typical government fashion, I was told, "You can always appeal".  Easier said than done.


Some days I just want to enjoy my kids without always having to spend my energy fighting to keep their services in place.  It may be school, insurance, county or state programs.  I don't know what happened to the word, "service"  It seems like many of the organizations that we work with make it their goal to reduce their clients services rather than work to meet the needs of the child.  I understand money is short but cutting services that will result in higher costs down the road just doesn't make sense.  Sometimes AJ's insurance gets the idea that they should limit his bandages to fifteen total a month.  We use more than that in one day.  I appeal and we remind them that a hospitalization resulting from an infection will cost more than the monthly bandages.


Since I have many people read this blog, in all fairness I have to state that AJ's school setting has gone beyond what is expected.  I have been so impressed with their planning and provision.


For those of you with children with disabilities, you understand the constant battle to keep services in place for our kids.  We always have to be on alert for threats to their well being.  I'm not asking for extras; just enough to keep us going.  


With that said I remind myself, rest in God, rest in God.  They really are his battles and I need to go out there like David and fight Goliath but I am not responsible for bringing Goliath down, that's God's responsibility.  It's hard to remember when situations get heated but it's the basis for our struggle.

1 Samuel 17:47 (English Standard Version)

That all this assembly may know that the LORD saves not with sword and spear. For the battle is the LORD’s, and he will give you into our hand.

I encourage you (as I repeat this to myself), if you are deep in the battle; stop, rest and pray. Get direction and remember that the battle is the Lords.  We just need our marching orders.  Like in the battle of Jericho; God's instruction brought about the victory.

Barbara

Easter with Family

It was a beautiful day to celebrate the resurrection!  

We started out the day with a sunrise church service

 and then enjoyed the afternoon with family

We had an Easter Egg hunt and it seems J always ends up in a tree??

RJ and Scott enjoyed the sunshine

AJ offered help while waiting on the trampoline

Grandpa gave AJ some tips on finding his eggs.

The girls enjoyed dressing up.

It was good to have some of our kids (from out of town) here for the day.

AS and E are here visiting this week.  Tonight we celebrated April Birthdays and are relaxing with some down time; something I don't do often.

What a great day!

Barbara 

Happy Easter

Happy Easter Everyone. What a privilege to celebrate the resurrection of Jesus.  He is our hope and our Risen Savior.

I Peter 1:3-4

Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead,  and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you.

Barbara

Praying for Andria and her family

Please pray for our friend Andria.  She was AJ's night nurse for the first two years of his life. She faithfully sat up night after night, rocking him, administrating medication and keeping his oxygen stats where they needed to be.

It is with deep sadness that I share the news of the death of Andria's husband Karl.  They were married less than nine months ago and he passed away suddenly at the age of 25.  We are so saddened by Karl's passing and the loss of Andria's husband and father to her three children.  Please pray for Andria, and her children.

II Corinthians 1:3

Praise be to the God and Father of our Lord Jesus Christ, 

the Father of compassion and the God of all comfort.

Praying their hearts will be comforted.

Barbara

Death, Life and the Resurrection; Do we live like we believe it?

Time flies - I've had health issues that took first priority over blogging but things are settling in to more of a "normal" routine.  The kids have been off school this week for spring break and Monday they head back. AW got his college acceptance letter and I celebrated my 49th birthday.  My kids made sure to let me know that I am old!  I told them that I am only one day closer to heaven.

I've been busy planning our summer.  We have made lots of camping reservations.  I love to camp and so does everyone else.  We sold our pop up camper and have purchased an expandable trailer with a bathroom and tub.  Here is our camper:

We knew we could not continue camping and bathing AJ in a tub on the picnic table.  Not only is it not the cleanest way to help his wounds but it was quite the sight for the neighboring campers.  AJ and I will appreciate the privacy.

Thanks for praying for Melanie.  She is no longer in critical condition but still has a long way to go.  You can keep up with her progress by checking  http://www.caringbridge.org/visit/melanie

I've asked myself a lot of questions when thinking about Melanie and how I would deal with AJ in a similar situation.  I want to think I would handle it as my faith directs me but it's hard to imagine since I have not walked in those shoes.

If you have a child with a serious or terminal illness, have you wondered if you will know when to "let them go"?  I would love to hear your thoughts if you feel like commenting. I know that this life does not have a strong hold on me and I look forward to life beyond.  I wonder how AJ will feel?  I know I want to raise him with the confidence that this life is not what we live for - instead we are living for eternity with our savior.

That brings up a difficult question.  How far do we push medical science to keep our bodies alive?  As a parent, how far do we push to keep our children alive when they live in daily suffering?  I definitely don't believe in hastening their death and I know that I would always provide food and hydration but what else?  When do we say no more and allow ourselves or our family members to move into the fullness of what God has prepared for us?

I Corinthians 2:9 (New International Version)

However, as it is written;

"What no eye has seen,

what no ear has heard,

and what no human mind has conceived"

the things God has prepared for those who love him.

I know I want AJ and all of my children to know about heaven and have anticipation for living there.  Not that he will not be encouraged to live to the fullest here on earth but if our faith is real, shouldn't we focus on what is ahead?  Do we want to take the notion that the world has - this life is it and we need to squeeze everything out of it that we can get because there is nothing more?

I know life is precious and I also know that God has set the number of days that we will live here.

Job 14:5 (New International Version)

A person's day are determined;

you have decreed the number of his months

and have set limits he cannot exceed.  

I believe that suffering and blessing has a place in our lives.  I want my life and my death to bring glory to the God I serve.  I also want the same for AJ.  I pray that I can be a mother that directs him to the cross and the hope in  the resurrection.  What a great thing to think about as Easter approaches.  It's not about death, it's about His (Jesus) resurrection.  He is risen and that makes all the difference for us. Now to live like that - not clinging to this world but instead with one foot already in the door of heaven.

John 11:25-26 (New International Version)

Jesus said to her, "I am the resurrection and the life. 

The one who believes in me will live, 

even though they die; and whoever lives by believing in me

will never die.  Do you believe this?"

Barbara