Hold your family close

 

I have to start with these cute pictures from last night.   Wednesday night I took pictures of Jon holding Sarah and Sam coming up and wanting up.  Well last night Jon was holding Sam and you can see who came up to get some Daddy time:)

 

 

There is often a little jealousy in our home:)

 

 

Today has been a "Family Fun Friday"  Jon is off on Fridays so he took the boys to the Y early this morning, came home and they worked on the church lawn with a guy from our church.  I cooked a big Southern lunch, everything made from scratch and then I took the boys to see Monster University while the littles napped/rested.  Selah is doing good and I'm feeling better,  Having gone through so much over the past year, days like today are such a blessing.  I do not take them for granted!

 

We got a letter today from our insurance carrier Blue Cross, saying that they have denied our appeal for Selah to have home health nursing.  We have several more steps to go in the appeal process and I am confident that she will be reinstated for nursing.  In the meanwhile she does have nursing care through Medicaid.  However, we pay our premiums and have for years and years.  Home Health nursing is part of the package deal and we will get it paid for through our insurance.  They approved her for nursing and unfortunately she is no better than when she came home from the hospital.  It's such a pain to have to take the time to do all the paperwork but I've been told by several families this often happens right around the 6 month mark home.  Some families don't fight or some go through Medicaid.  Well we will fight.....   We do not want her as a Medicaid patient as Medicaid does not pay as much to the agency/nursing staff and we want the best nursing for her.  Right now we have experienced and very able nurses, that's how we want to keep it! 

 

To be honest I was NOT very nice when I talked to the Blue Cross agent on the phone....then I had to fax something in.  The fax didn't go through so she called me back and said all she got was a letterhead from Grace Church.....She was probably wondering about that LOL.  I actually apologized for losing my temper with her.  I was a bit ashamed but I did tell her, nothing gets me upset EXCEPT for someone messing with my family!!!   She said she understood and she was a mom.....she seemed apologetic BUT she is the one who signed her name to the denial.....I told her she had to take responsibility....I'd never work somewhere and sign my name to something I disagreed with. 

 

So we will work the appeal process, if that does not work, we will go to the media....this is CRAZY!    I tend to have to fight for my kids, but I usually get what I think they need.  The bad thing is that not all families get what they need for their kids because they don't fight or know how to....it shouldn't be like that!  I do get tired of the fight but I don't stop if I think my kids need something.  It's terrible how so much of your energy as a special needs mom is tied up in fighting for your kids!

Thankfully I've never really had to fight for anything for Steve or Shad, with them things are very different.  I've never even had to get involved in anything at their school, or even meet with the principal or teachers about any real need or problem.  Over the years, if there were issues, I'd just tell them to either obey their teacher or work out their problems with their friends/bullies or whatever.   They really have never had much of a problem over the years...except one time, Steve was in high school and there was another high schooler who was just a total bully and jerk.  Steve is so even keeled always but one day, the boy just got on Steve's last nerve and Steve decked him!  I go to pick them up after school and he tells me about it.  OMGosh....I thought he would be in so much trouble...I ran inside and went to the principal, scared that Steve would be kicked out of the school.  The principal was like "yeah-that boy had it coming, Steve sat him straight"  I waited till I got in the car to laugh....YIKES!  The boy ended up getting kicked out and everyone was glad.  Over the years, that story has grown to mammoth proportions at Steve's school and he has never had an issue with another bully.  LOL   

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If you are following Teresa's story, she is doing ok, for the situation she is in.  She still needs much prayer as she will be on the ECHO until Monday and then another major surgery to see if they can fix the veins to the heart/lungs.  Her kidneys are not doing good. 

 

http://www.facebook.com/l.php?u=http%3A%2F%2Fourplacecalledhome.blogspot.com%2F&h=yAQHX0Uoc 

 

that is their blog link

 

and here is a story about her

 

http://foxbaltimore.com/news/features/top-stories/stories/teresa-bartlinski-struggles-new-heart-after-transplant-20596.shtml#.UcTDdIbiFdQ

 

Just looking at the photo of her and her mom right before surgery tears at my heart.  I know how hard it has been to give Sam over for EYE surgery much less heart surgery!!! 

 

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You never know what a day will hold, LOVE your family....you can't get back one day.  As we go through the summer, my mind goes back DAILY to last summer and how happy and whole our family was.  I feel like we are speeding towards the one year anniversary of the accident and it breaks my heart.  On our way up to NY we stopped first at "Mayberry"  NC  Andy Griffin's home town.  I relive that day over and over....   Then a friend on FB mentioned they were in Berkley WV and I remember stopping there for the night and  eating at a Outback....the manager saw our family and gifted us the meal and gave us some gift cards.  He had a brother with a disability.   Then the next morning we stopped at the Dam overlook and walked the trail.  I had no idea what was ahead for us in just a couple of days.   As we drove into Rochester NY, coming off the toll road, making the circle onto the interstate we saw this HUGE rainbow.... as we were driving up to the RMH we crossed the Erie Canal and someone started singing the Veggie Tale song "Erie Canal" that is now outlawed in my house.  We were so happy, racing towards the worst thing that has ever happened to us.  Looking back, I am shocked I didn't feel a sense of dread....  but no there was nothing in those last few days to warn me of what lay ahead. 

 

Over the summer, several friends of friends had some accidents and I did get afraid something would happen to one of my kids.  I actually talked Steve out of going out of town with a youth group because I did have a weird worried feeling but I didn't' have it on the trip.  In fact, it was all happiness and laughter.  We had a great trip up. 

 

I've never told but a few people this but on the day of the accident, as I was waiting for Jon, I was reading the newspaper.  There was a funeral notice for a cute little boy who had drown just the weekend before.  I prayed for his family sitting in the kitchen of the Ronald McDonald House.  Little did I know MY family was already in the water (looking back and comparing the time)  I literally got up from the table and started talking to the staff about WHY all the ambulances were down the street......unreal....

 

 

So much I do not understand....all I can do is pray for Selah.  Pray that God delivers us from this nightmare!  And it is a nightmare....some mornings I wake up and it still hits me like a punch to my stomach....all the memories come rushing back.   Just going to the movies today, reminded me of taking the kids last summer and how Selah watched Madagascar 3 and ate popcorn.  There was a Russian speaking lion in it and we all loved him.  He kept saying "Nyet" and we'd cheer:)  Oh if we could only go back to last summer.....

 

So today was a happy day, yet waves of sadness still wash over me....

Please pray for Selah and Teresa. 

 

Hold your family close...

 

 

 

Thank You!

 

 

 

Just to follow up with everyone....today I finally mailed off the money for the Orphan fund for last month!  The grand total was $1010 to help the Burmans bring their three kids home!  Thank you all every penny came from readers on my blog!!!!  Including my sweet reader from PA that sent in what we needed to put it over the $1000 mark!!!!!!!    Grace Haven also has a matching grant for them going on right now so if you give just a dollar, it will be matched!!!    BTW, I ran into the post office in a Florida thunderstorm that knocked out their computer system.  I then had to run back to the van to find enough change to buy a stamp since I couldn't buy a book!  But I got choked up when I put it in the mail to think of all of us who have come together to help them!

 

http://gracehavenhome.com/  is the link to give!

 

 

 

So far this month, I was focusing on Selah's sister for fund raising.  The family is close to travel, and not sure yet on the finances....  If the money is not needed, I know other children/families who can be helped by anything that comes in this month. 

 

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Last night was really special as the little ones were just really wanting to cuddle.  Sarah has started lying her head on our chests when we hold her, it is precious.  It is so wonderful to see her trusting us.  When you think of all the neglect she has endured, coupled with her mental delays and blindness, it amazes me how she can love.  Everyone that has ever met Sarah is blown away by her sweet spirit and smile. 

 

 

 

 

he is telling Sarah how much we love her:)  she thought it was funny

 

 

 

 

Sam got jealous!

 

then came Shad LOL

 

 

then mommy wanted to hold them ....

 

 

In spite of all we have gone through, I feel blessed. 

 

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We joined the YMCA again today.  So many "normal" parts of our lives changed last summer.  Our membership ran out and we didn't renew it until now.  So I think this is a good thing that we feel like we will be able to go back to the Y on a regular basis.  I'm looking forward to going to the Yoga classes.  In the past, I've enjoyed them and really felt like the classes helped my stiffness.  This time I'm starting in the senior citizen's class, they will probably kick my butt:)  Steve did the youth triathlon class and some triathlons so we want him to get back to that too!  It will be a good thing to get back to doing more exercise.

 

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Please keep praying for Teresa

 

https://www.facebook.com/groups/prayforteresab/?fref=ts

 

things are going better but she has a long way to go.  In the adoption community, we have lost several children lately.  We don't want to lose another child.  It's hard when families adopt children with life threatening illness or disorders....they go into a battle willingly but they LOVE their kids so much, they are willing to risk great heart ache to give the child the CHANCE to survive long term!   So please pray for Teresa and her sweet family!

 

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My friend's husband came through open heart surgery well!  Please keep praying for George that he will recover complexly and quickly!!!

 

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Thank you so much for everything you all do.  You guys are such a blessing in so many ways!!!!  Thanks for giving, thanks for praying...thank you for encouraging..

 

 

 

 

 

Lots of prayer requests!

Just to let you know, Teresa is a tiny bit better, she was allowed to wake up for a short time today and she was responsive, thank God!  All signs seem to indicate that there was no brain damage from the episode yesterday when they had to perform CPR for 30 minutes.  She still is very very serious and needs prayers! 

https://www.facebook.com/groups/prayforteresab/?fref=ts

Also a childhood friend of mine's husband is having open heart surgery tomorrow morning.  I was able to visit with the family today and felt their strength in God and love for each other.  Please pray for George that God will guide the surgeon's hands and that there will be no complications at all.  He was in this area for a minister's conference when this happened so they are far from home.  Thankfully they have family that were also here and lots of friends.  They pastor a church in north Florida.  But this is scary and he needs a touch from God! 

Well....I had a little scare yesterday....  I've had some pain in my right side for 4 years.  It has never gone away but some days have been better than others.  I've gone to the doctors over it and always tell my doctor that it is still there....   Recently I started having lower tummy/pelvic pain and pressure too.  I finally got in to see the doctor on Monday and she sent me for an ultrasound on Tuesday.  They told me the results, that I had an enlarged right kidney....yikes I looked it up and coupled with my other symptoms it scared me.  Since I wasn't going to be able to see the urologist for a couple of weeks, and the pain seems worse, I went to the ER last night.

One of my BFFs Kandi, went with me.  We first tried Tampa General since it is such a good hospital (evidently everyone else in the Bay area thinks the same!)...I waited 3 hours and they said they really couldn't tell me how much longer it would be.  One of the workers whispered to us that the wait could be like 5 more hours!    The funniest thing to us, was they had already drawn blood and put in an IV tube.  Evidently they do that to everyone as soon as they come in cause we were all sitting out in the waiting room like that.  I thought that it could just stay in since we were going to another hospital.   The  lady at the front desk went bonkers as we were leaving, she said if I left with the IV  in she'd call the police!!   For some reason, that just struck us as hilarious!   We decided to leave and go to a smaller new hospital nearer home.  Man, they got me in so quick and had all the tests done in 3 hours!  Based on everything, they did bloodwork and a CAT scan as well as an exam.  Nothing was out of the ordinary and the doctor is thinking I may have something called IC  Interstital Cystitis.  Thankfully I don't have an infection.  Some of the worse things have been ruled out but I'm sure I will end up having to have my bladder scoped.....NOT looking forward to that but I want to rule out anything serious and that is the only way.  I see the Urologist in a couple of weeks.  Please pray that there is nothing wrong in my bladder, or anywhere else!  As far as the CAT scan went, everything looked normal on the outside but it doesn't see into the bladder itself.   I still have some concerns as I'm dealing with the pain but having the CAT scan helped me a lot. 

When I think of all the REAL problems people have, I feel guilty to focus such fear for myself.  I'm not saying I shouldn't go to the doctor, I know I should and I always do all the yearly things....Pap, mammogram, and for me a colonoscopy every 5 years.  It's being responsible to do all of those things, especially when you have kids!  But I don't want to play up things either.   I have a lot of fears now, the older I get and the more things I've gone through or seen others go through..... Really I think I feel very vulnerable right now and everything is just enhanced.   I've lived with pain for over 4 years now and it does get scary when no one can give me an answer.  I'm almost thinking I have a form of fibromyalgia although I do not have all the symptoms.   My upper back has been sore to the touch for years as well as my side.  I can live with the pain, it's more the psychological pain of not knowing WHAT is going on that is worse!  I want to totally trust God with this issue and not be consumed with it.  There are so many people who are going through much worse, much more serious things than this!!

Thank you for all your prayers!!

 

Here is me and my hospital buddy celebrating at Waffle House at 2am last night!!!!   Everything is funny at 2 am!  Believe me we had some funny things to laugh at....  I had the funniest doctor who kept calling me "Miss"  and let's just say he didn't do good on bedside manners....not that he was rude, he just had a certain way of saying things that was hilarious.  There is something he said, that I'd love to repeat but it might just be a little too personal about me!  LOL!!  Let's just say he answered my questions very clinically..... 

 

Today I took the kids to see my friend whose husband is having surgery tomorrow.  First we stopped at Pizza Hut (no not the healthiest but so good!)

 

 

Then we saw these ducks!  We were laughing and said it was a good thing that the Duck Dynasty guys were not around.......it was raining too much for the ducks to fly!

 

Truly, I enjoy being with my family.  It's lots of work to take the little ones out and go everywhere with them but I love for all of us to be together even if it's just going to the store.  I realize my time with Steve is limited, soon he will graduate from high school and go to work full time or to college.  I treasure the time together with him and all of the kids. 

 

 

Selah has had a good day, no issues.  She did get some really soft hand splints, just something to keep her wrists straight.  Most of the time she holds her hands/wrists straight but sometimes-usually when she is sick- she turns her wrists a odd way that is not good.  So now we have really good soft splints, that give her just enough pressure to keep her wrists straight.  She doesn't seem to mind them at all.   They also are going to be working on her leg braces, there was a small red spot on the back of one foot last week.  She may just need a little bit more padding on the brace. 

 

 

Selah has some head control.  We are hoping she will improve and strengthen it. 

 

 

As you know I've really looked into Stem Cell Research for Selah.  There are no real clinical trials going on in the USA that she would be eligible for.  I actually heard back from the doctor in Germany but they also are only in clinical trials with children who had their cord blood banked.  That is all the US is doing also.  There are some clinics in the US and abroad that are using the child's blood marrow cells to inject into the vein in the head but some of what I've read is a bit shady.   Of course you have China and Mexico that use "embryonic cells" BUT I've been to China and Mexico....I don't want them injecting anything into my child!  Who knows what is being given....and the kids don't have huge changes either....  It's not like they are waking up and getting out of their wheelchairs!  The real success seem to be with the lucky few who have their cord blood banked so they could use it.   I'd advise any expectant parent to back their child's cord blood.  It's not cheap BUT it could save or change their child's life.  It was just starting when we had Sam and I had planned on doing it with him but then he came early and everything was so crazy we didn't do it....  You have to have everything in place before the child is born and since he came early......we didn't have the kit.  Of course with Selah being adopted, we certainly don't have her cord blood.   Please pray that if there is any REAL study in the USA that we can find it and enroll Selah into it.  I did find a little info about a study using a child's tooth to get stem cells.  That is not so far fetched....  Sam's doctor in Miami, grew a cornea from a lady's tooth....and used it on the lady and she regained her sight!    I could see the teeth being used! 

 

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Here are some of my tomatoes.  Since I grow organically I do have lots of bugs.  I have to pick them and let them turn red inside.  Sometimes I do have to fry up some "Fried Green Tomatoes"  Yes we LOVE them in the south.  Of course we love everything fried, I've said if there was a way to fry poop, we'd probably eat it LOL  But if you've never had Fried Green Tomatoes or Fried Pickles....you just have not lived!!!!

 

 

Again thank you for your thoughts and prayers, not just for me but for the needs I bring forward......

 

Pray for Teresa B

https://www.facebook.com/groups/prayforteresab/489575127778235/?comment_id=489619621107119&notif_t=group_comment_reply

 

 

 

 

 

 

This is from her mom Ann

 

 

ECMO
This morning Teresa came out of surgery with her right ventricle struggling but not too bad. A few hours later she went into full cardiac arrest and had cpr performed for over thirty minutes. She was put on life support (ECMO).' Her left and right ventricle are not functioning at all. At this point the Doctors are unsure of what is the cause. The best case scenario would be the heart was shocked from the transplant and needs time to adjust. But it has no function at all ( not good). If this does not improve she would have to be relisted while staying on ECMO. (not good)

Things could not get get much worse.

... Life is so fragile and could be gone in a second. We are trying to hold on to the little bits of hope. She is urinating and her body is warm . She has had several blood transfusions and is bleeding from her nose from the blood thinners for ECMO(not good).

I am reminded of Mary and Martha , when they called upon Jesus to come and help Lazarus because he was sick. Jesus did not come right away . Lazarus died.

I believe Jesus did not come right away because He did not want to cure a sick man , He wanted to raise a dead man , a much bigger miracle.

We are holding onto hope that this is what Jesus wants for Teresa. Not to cure a sick child but to perform a HUGE MIRACLE and miraculously have Teresa's heart start beating again in full function. Please pray for this miracle it is huge . She needs her left and right ventricle to start beating. The longer she is on ECMO the more problems her body will face...bleeding,stroke, blood clots, organ failure, brain damage.

Thank you all for continuing to pray and offer loving support. Please ask everyone you know, Pray for Teresa. All things are possible with God

 

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Please pray for this precious little girl!!!  Things are so critical for her right now. 

 

http://ourplacecalledhome.blogspot.com/Teresa's

 

 

How Close do you want to live to God?

How close do you want to live to God?  I heard a song today that really spoke to my heart.  It spoke about walking with God through the sunshine and the rain of our lives.  I can't even remember the words now but it made me think.  One line said "temptation is great, but God's love is greater"   How true! 

You can live your life, go your own way and yet at the end of your life, you can still come to Jesus but WHY?  WHY? would you want to live without God in your life? 

Being raised in church, as teens, we would often have long discussion about "how far can you go" and still not do too much sin ....  we were mostly talking about how far could you go sexually without "being in sin"  Lord, I laugh and shudder now about some of those conversations!   Evidently we didn't really have the concept of not living on the edge....  

You know, I don't want to live on the edge spiritually.  I don't want to see how close I can get to sin and still "be saved".  Oh I've lived there in the past, that is why I don't want to live there now.  I have friends, who want the world and they want God.  The world is "fun" to them and God is a comfort to them but they don't want to let go of the things of this world and hold onto just God.  It's sad to watch. 

There is nothing, NOTHING, that is sweeter than Jesus. There is nothing like having a clean heart before God.  There is nothing like knowing that God is with you, with you in your worst moments of life. 

I'm not sinless, I definitely know my weaknesses....and I stay away from those things.

"Sin will take you further than you ever wanted to go, keep you longer than you ever wanted to stay and cost you more than you ever wanted to pay"   I heard that old saying a long time ago and it is so very true.

Being a pastor's wife all these years, I've had the chance to see how SIN (not just an act of sin but living in sin, being away from God) destroys lives and families, marriages and jobs.....  The sad stories we have heard over the years.  I know it true in my life also.

After we lost our twins, many years ago, I thought "I've had enough of God, He didn't work a miracle for us, I'm tired of serving Him"  So I did not play...I was DONE!  Completely utterly done with God.  We were serving in the inner city of NYC at the time.  There were a lot of changes in the ministry we were working in and it was a good time for us to move home.  We left and came home, I went back to work and I was done....  My focus was not on God, my husband, ministry ...it was on me and my anger.  It was NOT a good time in my life.  Our oldest son was young, our marriage was holding on by a thread, our schedule kept us from seeing each other much and that was fine with me.  We worked things so one of us was with our son most of the time and he didn't have to be in day care much.  My old friends didn't know what to think and I basically told them to mind their own business.  I tried going out and drinking but I don't like alcohol LOL .  I'm just not a party animal .....    Every once in a while, I would have to go to church.  At this point in our lives Jon was a chaplain only, not pastoring so it was easier for me to not have to go to church.  It was NOT a good time in my life....  This valley was a valley that went on for a few years....years I wasted! 

But through it all, God would draw my heart back to Him.  I remember going in service late one Sunday night and the pastor was giving a word from God.  He spoke so directly to me, it was almost scary.  God kept wooing my heart.....and when the sin got old and empty, and my anger was gone....  God was still there for me.  I repented and turned back to Him.   There were some struggles inside me for awhile but God helped me through.... 

Then just when things were good....we had Sam!  Oh MY!  At that point, I decided "God I am going to live close to Your side and let You walk with me through this"  I'd done the anger and the bitterness...I wasn't going to do that again!  There was nothing there, nothing and no one to hold on to.  But walking with Jesus gave me the peace and strength I needed. 

That was a decade ago that I decided, come what may, I'm going to trust God and live close to Him.  I'd been raised in Church, prayed often as a child, a teen and young adult.  Wanted nothing more than to be in ministry....I loved God but I had a warped expectancy that serving God meant Life was going to be perfect.  The Bible does not promise us that.  In fact the bible and Church history shows us that most followers of Christ suffered much hardship.  So I was like the parable of Jesus of the sower...

The Parable of the Sower

13 That same day Jesus went out of the house and sat by the lake. ² Such large crowds gathered around him that he got into a boat and sat in it, while all the people stood on the shore. ³ Then he told them many things in parables, saying: “A farmer went out to sow his seed. ⁴ As he was scattering the seed, some fell along the path, and the birds came and ate it up. ⁵ Some fell on rocky places, where it did not have much soil. It sprang up quickly, because the soil was shallow. ⁶ But when the sun came up, the plants were scorched, and they withered because they had no root. ⁷ Other seed fell among thorns, which grew up and choked the plants. ⁸ Still other seed fell on good soil, where it produced a crop—a hundred, sixty or thirty times what was sown. ⁹ Whoever has ears, let them hear.”

¹⁰ The disciples came to him and asked, “Why do you speak to the people in parables?”
¹¹ He replied, “Because the knowledge of the secrets of the kingdom of heaven has been given to you, but not to them. ¹² Whoever has will be given more, and they will have an abundance. Whoever does not have, even what they have will be taken from them. ¹³ This is why I speak to them in parables:

“Though seeing, they do not see;
    though hearing, they do not hear or understand.

¹⁴ In them is fulfilled the prophecy of Isaiah:

“‘You will be ever hearing but never understanding;
    you will be ever seeing but never perceiving.
¹⁵ For this people’s heart has become calloused;
    they hardly hear with their ears,
    and they have closed their eyes.
Otherwise they might see with their eyes,
    hear with their ears,
    understand with their hearts
and turn, and I would heal them.’^[a]

¹⁶ But blessed are your eyes because they see, and your ears because they hear. ¹⁷ For truly I tell you, many prophets and righteous people longed to see what you see but did not see it, and to hear what you hear but did not hear it.

¹⁸ “Listen then to what the parable of the sower means: ¹⁹ When anyone hears the message about the kingdom and does not understand it, the evil one comes and snatches away what was sown in their heart. This is the seed sown along the path. ²⁰ The seed falling on rocky ground refers to someone who hears the word and at once receives it with joy. ²¹ But since they have no root, they last only a short time. When trouble or persecution comes because of the word, they quickly fall away. ²² The seed falling among the thorns refers to someone who hears the word, but the worries of this life and the deceitfulness of wealth choke the word, making it unfruitful. ²³ But the seed falling on good soil refers to someone who hears the word and understands it. This is the one who produces a crop, yielding a hundred, sixty or thirty times what was sown.”

Although I had been raised in church, and had prayed, studied the bible, I was like seed falling on rocky ground, I heard the word with joy but had no roots, when trouble came, I fell away.

I'm being pretty open and honest tonight....maybe God wants me to be like this for YOUR sake...

The ONLY thing holding you back from God is yourself...He is willing that ALL should come to repentance.  If you haven't turned to Him and asked for forgiveness for your sin, do so, He is waiting for you.  If you are a Christian, and you are living far from Him, you need to turn back to Him also.  He is waiting for YOU!   I don't believe just praying once and then not living for God will get you into heaven....and even if I'm wrong, I know it sure won't get you peace.   You've got to give it all up to Him. 

There is nothing else in this world that will satisfy your soul like God.   I try and not use "Christian slang" but there if you are looking for PEACE, you will only find that peace at the foot of the Cross. Give it a try, throw yourself on God, give Him your mistakes and failures.    THEN you've got to walk with Him everyday.  It's not a one time prayer, it's walking it our daily. 

WOW...I'm not too preachy on here usually but this was just stirring up inside of me tonight....

But maybe someone needed to hear this.....



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These pictures are from last night.  Jon was watching a church service on DVD and you can see how attentive Sam is.  When the DVD finished, he fussed till Jon put a new one on!  I have never seen anything like him. 

 

 

 

 

 

 

Sam is the funniest little boy!  He is so drawn to God.  He likes little videos, Sesame Street or whatever but if you put on a preaching video, you have his complete attention.  He sat through TWO hour long DVDs last night, we don't make him LOL!  Unfortunately you won't see my other boys in there watching the preaching DVDs but Sam will be right there.  He won't sit for anything else ....it's really special.  He sits right through church every week, right on the front row....

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Today Selah got her stander.  It is a contraption that stand her upright.  It's supposed to help her not lose muscle mass, keep her bones strong, help her lungs etc....  She did not seem to mind it.  Me?  I bawled...I think I shocked our nurse.  I just hate how it looks. 

 

 

 

 

 

 

 

There are days when my heart just aches within me....The last couple of days, it's been like that for me.  This stander was just the "straw that broke the camel's back" It's good for her to have the stander, it's not like it changes anything but, it hurts.   Today I'm clinging close......

 

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Please as you pray for Selah, please pray for me.  I've had some medical issues for years that have been unresolved.  They've gotten worse lately along with some new issues.  On top of the whole stiffness/pain throughout my neck, shoulders and back.  I went to the doctor today and have some testing set up.  To be honest, I always expect the worst....so....I'm a bit freaked out! 

 

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Teresa was adopted from China.  She was featured on The Shepherd's Crook's website just like Shad was....  Tonight after 3 years of waiting....she is getting a new heart as I write.  "Oh God be with her, be with the doctors.... be with her family and please be with the family who so unselfishly gave the gift of life to another child today."    I have to say that family who gave their child's heart for transplant after the child's death, is an amazing family.  If I were in their situation, I hope I'd do the same but it must be so very hard.  God be with them.....

 

Read her story on the link below. 

 

http://ourplacecalledhome.blogspot.com/2013/06/teresa-has-heart.html

 

 

 

I do not know this family personally but I have friends who do....I love their blog and their love for their children. 

 

 

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Thank you all for your prayers and kind comments!

Happy Father's Day

I wrote this for a cupcake contest...I didn't win but ....I wanted to share it. 

What is special about my hubby
Jon is the dad of 5 kids, 3 of them, very handicapped. Two are biological and three are adopted from various parts of the world....He works full time as a chaplain and a pastor of a small church. He always has time to give to the kids, nothing comes before them. Right now, he is outside sitting on the swing singing to our son Sam who is blind and non verbal. In a few hours, he is taking the big boys to the movies....this morning he prayed and wept over our daughter Selah who is greatly handicapped because of a near drowning. He gave our other daughter breakfast.... Jon is a giver in every sense of the word! He is amazing and I'm glad he is my husband. I never had a father, but I think having him for a husband and seeing how a father loves has also healed me.......

Jon is a great dad.  Today after church he and a friend took the boys back to the river to kayak.  It was a wonderful way to spend Father's Day with his boys and I know they will never forget it.  I'm blessed to have an unselfish husband who puts his kids needs before his, that is how it has always been.  I'm glad my kids have what I didn't have in a father.....

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We didn't take any pictures as they were all in a rush to go after church.  I was going to post some from last year but I just feel too sad to do that.  We take so many pictures and looking through them,  I'd forgotten some and they are so sweet they make my heart ache.   Today is not a good day for that for me. 

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Selah seems to be doing ok, she just keeps have a few low oxygen numbers.  We are hoping it is just the machine or how she is sitting.   Otherwise she has done great.

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Hope everyone has a great day!

Prayer Cloth

Last night, got up with Selah, took care of her.  It wasn't hard but got my sleep out of whack...  Got up this morning, dozens of little things going wrong, house a mess, mower not working right, had to stop and find the warranty and call and set up for them to come and work on it.... went ahead and cleaned the filing cabinet at the church since I had to pull everything out looking for the warrenty....mess everywhere....just feeling annoyed.....


THEN....got the mail.... and in it...was a letter from my friend Inger in Finland...

 

She had felt to go to a meeting and have prayer for Selah.  She sent us a prayer cloth that had been prayed over ....we put it on Selah's head and prayed for her.  All the little annoyances of the morning, just faded as we cried out to God, putting our prayers with the prayers of others,, far away, who cared enough about Selah to bring her name to the throne of God. 



Selah was very calm when we prayed for her, then I wanted to take a picture with it on her, and she wasn't so sure about that:)

This just really touched Jon & me so very much.  If you don't understand what a prayer cloth is, it is based on Acts 19 where people sent pieces of  Paul's clothes to sick people and they were healed.  My friend felt prompted by God to go to a service at her church.  She wanted to take Selah with her, but of course we are far away.  So she had this done and had many people lay hands on this cloth, and prayed for Selah.    This was just precious, it will be something we keep.  Thank you my friend!  I tried to send you an email but couldn't find your exact email address.  Thank you so much~you have have idea how touched we were by your obedience to the prompting of the spirit of God. 

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