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

Please pray for Melanie

Please pray for Melanie and her family.  She is very, very sick and she and her family need our prayers.  Melanie is a friend of AJ's from our church.  She has suffered from a serious physical disability since birth but through it all she has loved Jesus with a sweet and gentle heart.  Right now she is in the PICU and and you can read about her journey here Melanie 

Barbara

I've been singing this song and praying for her this morning.  

I Know Whom I Have Believed

I know not why God's wondrous grace

to me He hath made known,

Nor why, unworthy, Christ in love redeemed me for His own.

I know not how this saving faith to me He did impart,

nor how believing in His Word wrought peace within my heart.

I know not how the Spirit moves, convincing men of sin,

Revealing Jesus thro' the Word, creating faith in Him.

I know not when my Lord may come, at night or noonday fair,

Nor if I'll walk the vale with Him, or meet Him in the air.

Chorus:

But 'I know whom I have believed, 

And am persuaded that He is able

To keep that which I've committed

Unto Him against that day.'

Happy Birthday Rachael!

This week was Rachel's birthday.  I really enjoyed thinking about her and I tried to spread the enjoyment to the whole week and not just March 2nd, the day of her birth.  Rachael was our firstborn and would be twenty six years old this week.  She died shortly before she was born as the result of a serious kidney disorder.  We learned earlier in her pregnancy that she would not live long past her birth.  I can now look back at her short life with pleasure and peace.  At the time she was born it seemed like I would never see the situation through the eyes of anything but pain.  Each day that has passed I have treasured the words of scripture that hold so true.  I can't wait to see her and have time with her again.

I Thessalonians 4:13-18 (New International Version 1984)

Brothers, we do not want you to be ignorant about those who fall asleep, or to grieve like the rest of men, who have not hope.  We believe that Jesus died and rose again and so we believe that God will bring with Jesus those who have fallen asleep in him.  According to the Lord's own word, we tell you that we who are still alive, who are left till the coming of the Lord, will certainly not precede those who have fallen asleep.  For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first.  After that we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air.  And so we will be with the Lord forever.  Therefore encourage each other with these words.

What joy to look back on her life and into the future, "through the eyes of Jesus".

Be encouraged,

Barbara

He's Growing Up

Aj learned a new skill - crib jumping!  It's been easier to just keep him in a crib all this time as he has been connected to an airway monitor and a feeding pump - at least until - he learned to jump over the side while still connected to his pump.  I really don't want an emergency trip to repair a hole in his stomach or to have the tube replaced so it was time to find him a bed.

Some of you know that I am a Craigslist shopper.  We went in search of a bed and found a fire truck toddler bed.

I didn't even know they made cute beds like this.  Now to take down the zoo theme on the walls!  Anyone in need of a nursery zoo theme?

A special thanks to KJ who picked up the bed for us.   It gave us a good excuse to travel to the Twin Cities for a visit.  The girls, AJ and I made it a day trip and took KJ along to the Mall of America.  We had lots of fun as we spent most of the time on rides.  (For those of you that don't know me - I hate shopping more than anything).

I found AJ his summer shoes.  We knew that many kids with EB wear Crocs.  Since AJ's feet were getting too hot in slippers I ordered a pair online.  He loves them.  I did have to stretch them out some - I used a hair dryer to heat the material and then stretched it.  Considering he has his feet pretty heavily wrapped, I'm so glad they fit.

They look cuter on his feet than in this picture. He adjusted to them quickly but does seem to trip some so it will take some getting used to.  I don't think it's that they are too big but instead they seem to stick to the kitchen floor (yes, my floor is clean).

Thanks to all of those that called or emailed about RR.  We are working on finding a permanent placement for him. Right now a longer term hospital setting is being considered - just to get him better stabilized.  At this point we just keep moving forward, waiting for his care team to make a decision.

2 Peter 1:3 (New International Reader's Version)

God's power has given us everything we need to lead a godly life.  All of that has come to us because we know the One who chose us.  He chose us because of his own glory and goodness. 

Have a blessed week.  I'm hoping for Sunshine.

Barbara