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Sunday, January 27, 2013

Time and Time Again


Intense times when Dominic plays cards, full-on, focused, and fierce.


Sorrowful times, like when Daddy was in Belize.


And a time for celebration when he returned!


There are also times to try new things, like a very first hair-do for Miss E.  It was a bit of a challenge getting her to endure the process, but she looks fabulous.


And there is always a time for these girls to Zumba.


And time for this guy to get into his Mock Trial work.


But Mr. Drama never thinks there is a time for math.


And Gabriel is extremely disciplined with his time.


And as the baby Ari thinks life is just about having a good time....

But while God changes the times and seasons, He never changes.  This comforts me so much when I can barely wrap my head around what is happening around and within me.  He knows....pretty much everything....and that is enough.  Just in the last couple weeks Antonio has had a bunch o'seizures, we found out we are going to Disney World next week for Esther's Make-a-Wish trip, we have four kids with hospital appointments this week, and everything is lining up for Esther's surgery Feb. 12th.  I am blown away by the community of awesomeness that is the body of Christ here.  The timing of the outpouring of love to our family could not have been better. Meals, rides, help of all kinds....I'm overwhelmed.  My God does supply all my needs, and it's even more obvious when I'm at my neediest.  

The very One who took such time and care to knit us into existence is not hurried or worried by where we are in our journey toward Christ-likeness.  The Eternal One sees differently than we do, and the moments we judge as "not our best" may very well be the ones that are producing the most spiritual fruit.  Harvest time is coming, sowing does lead to reaping, and times of refreshment are always available for the heavy-laden.  For such a time as this we can say "thank you" even if we don't understand it all.  One day He will flip over the tapestry of our lives and show us the beautiful 
behind-the-scenes design He was weaving. The threads of His mercy and grace will be more beautiful than any color we have seen yet and time will be no more.  Until then, we can trust our lives with the Ancient of Days.    
Monday, December 17, 2012

Rest


Long time no bloggy I know.  Ever since I got back from Uganda sleep has been challenging for me.  (although it obviously comes easy for my Dad and Ari)  Esther doesn't sleep all night and I already have a Princess and the Pea complex....so without going into all the details let's just say long periods of no sleep affect me in a very negative way.


With some good meds and some significant lifestyle changes though I am back on track. (dramatically falling on your butt can be just the thing God uses to provoke a change in our lives!  Sometimes I hear the still small voice....but sometimes I need what C.S. Lewis called the "megaphone" of pain) 

We are gearing up for a hospital marathon next year for Miss Esther.  We got clarity on what path to take for the very large AVM that is right on her brain stem.  We will be doing a series of embolizations followed by radiation after we were told that her risk of death right now outweighed the risk of complications from the procedures.  Thanks to Blessing I already have the perfect anesthesiologist picked out!  


Today we went to court and did our re-adopt.  Esther is now officially a Groothuis!!!  (although the last name the orphanage gave her "Kukiriza" which means "Faith" was pretty cool too)  She has a middle name now as well "Favor" which is all over her life.  Thank you again to all the people who prayed and advocated for her over the years.  The judge was moved today by her story.  I am still moved by her.  Then again, I marvel at the miracle of every life.  I still sneak in at night and watch my teenagers sleep in heavenly peace.  And it's not because I'm jealous of their ability to do it so easily....it's because each one of them is a unique miracle and I am in awe of the One who never runs out of ideas. 

Thursday, November 8, 2012

Strength and Weakness


Gabriel turned 15!  He is a prophet, evangelist, and truth seeker and speaker.  When he was 4 years old he told me I was making an idol out of a book we had lost when I was tearing up the house looking for it.  He said, "Remember where your heart is, there is your treasure Mom.  Don't make finding this book an idol in your life."  He is passionate about living his God-given life to the fullest and he uses his strength to help the weak.
  

Esther is still not real particular where she naps.  Her sleep cycle could be described as "erratic."


I was supernaturally provided with the opportunity to attend a retreat.  Being led beside some still waters always restores my soul!


Homeschooling looks a lot like legos for the little boys most days.  


Bath beards are part of Esther's curriculum.....


We went to the most beautiful, God-infused wedding last weekend.  Dominic assured me he only went to weddings for the cake and I should not take this as a sign that he himself would ever get married.


Antonio, and all the siblings, continue to keep Esther vertical and moving.  Physical therapists have nothing on these guys!


Our overflow bed continues to have nighttime visitors....


And our daytime snacks continue to draw a crowd.


It was no small miracle to get neurology, cardiology, and ENT to coordinate their tests under the same sedation for Miss Esther.  Her hearing test came back good, but her MRI revealed a surprise.  Esther has a mass of arteries and veins right by her brain stem that are connected and communicating abnormally (an AVM in a really poor location, really deep within the brain and right by a  very"touchy" area) and she is at a high risk of a massive hemorrhage at any time.  Where blood should be going to her brain it is being shunted back to her heart (hence the heart murmur they thought they were hearing).  The neurologist (who had never seen anything quite this extensive) thought consulting with neurosurgery would be lunacy as the area of the brain this is located in would be too risky for surgery.  She had us consult with interventional radiology and their recommendation was to do multiple procedures to try to sever these connections in increments.  However the risks of stroke, aneurysm, and death from the procedures are nearly as great as doing nothing.  Soooooo....this whole "is the treatment worse than the problem" question is very familiar, i.e. Miss Blessing, who nearly lost her life while undergoing all her invasive interventions.  

I am so thankful that God is bigger, more powerful,  and wiser than I can fathom.  Brad and I prayed about our decisions regarding the treatments for our kiddos with health issues, and even when things would appear to go south for a season, we never played that "coulda-woulda-shoulda" losing game.  So we are waiting for peace about the next step for Miss Esther.  Right now weeks on end in the hospital, difficult recoveries, for a less-than certain outcome doesn't seem super appealing.  We are leaning toward a second opinion and more prayer at this point.  

Peace is always available because Jesus never leaves us alone.  We can make our joy conditional on circumstances....but why?  There is a different Kingdom, far above the kingdoms of this world, which is characterized by righteousness, peace, and joy in the Holy Spirit.  Where King Jesus reigns and His love is the currency.  That's where my citizenship is and that's where my hope is.  

Saturday, September 29, 2012

Diagnosis


Well all that glue in her hair and a 24 hour EEG gave us a diagnosis....of Lennox-Gastaut Syndrome, which to quote is a rare and "devastating" form of childhood epilepsy with a poor prognosis that leads to regression, mental retardation, multiple types of difficult to treat seizures, behavioral disturbances....and the list goes on. When we got home from the hospital Adriana came up to me and said, "You know what song is stuck in my head?  'Do not worry about tomorrow....tomorrow will worry about itself!"  What a timely reminder that all we have is right now and we can choose to believe the best and use our will to rejoice, give thanks, and be at peace with the fact that we don't have to understand everything.

God is bigger than any diagnosis, label, or circumstance after all.  And Esther is more than her multiple seizures and constant care.  She has already taught us so much....how to slow down, be extremely flexible with "our plans," and how to appreciate little things like big hugs, little grunts of delight, and a greater appreciation for all LIFE.  I can't go anywhere these days without seeing kiddos with Down Syndrome, Cerebral Palsy, etc.  In a world where intelligence and beauty are the measure of worth, it takes a different lens to see Jesus in a grunting child covered with drool...but Christ said it's in "the least of these" where He often hides Himself.  I love His hide and seek games because He always lets me find Him!  He has diagnosed us as His "beloved" which is my favorite label of all.  Let your Beloved-ness in Christ trump every other name that may have been slapped on you through the years.  Your Great Physician is also your Bridegroom King and He is an incurable romantic!
Thursday, September 27, 2012

Powerful


This quilt came in the mail right after we got the phone call that Antonio had had 2 back to back seizures up in Minnesota where he was visiting his cousin and we had to come get him right away.  He had been seizure free until we left for Uganda this summer, but since we brought Esther home he has had seizures more frequently than ever before.  This quilt was made by one of the prayer warriors who had prayed for years for Esther to find a family and each square represents a different family who had prayed for her as well.  What a sweet kiss from Jesus to remind me of how He takes what was meant for evil and flips it around for good.  Were it not for what Antonio has been through we would never have considered Esther.


So Brad and I had a hot date driving 10 hours in one day, (and God's great provision is that the couple who watched our children while we were in Uganda "just so happened" to be back from Arizona and were able to hold down the fort) which we had just done the week before when we went on vacation to northern Minnesota with my family.  Brad was the rock star who packed out the van for all of us.  There were no laundry facilities available so when we returned 6 days later there was a mountain of campfire-scented laundry that threatened to take over the house, but we conquered that beast eventually!


These girls lined up at each bathroom stop in order of who took the longest to get their potty business done.


And sleeping in log cabins is just sheer fun.


Antonio is supposed to go down to neurology at the Children's Hospital here, which is quite convenient since Esther has her 24 hour EEG with them today.  Antonio is the kid who is always up before anyone else in the house, praying and reading his Bible.  He is the first to pray for any situation and has an intense hunger and thirst for righteousness.


I asked Gabriel to strike a "boss" pose, and I like the look that says, "I will not be intimidated."  Gabriel  looks out for his younger siblings and can have us all laughing hysterically one minute and then throw out a comment that reminds us how deep this young man of God is.  


Little man Ari has been through it this last month as well, from a nasty staph infection to a virus that caused such painful sores inside his mouth he wouldn't even swallow his spit.  He has been a feverish, limp little thing for a while now, but he's turning the corner.


And then there's little Miss Esther who is making great strides.  She can't communicate to me that she needs to go, but I take her to the potty enough that we are having much success in this area.  She also has had these laughing spells recently that crack us up.  They've been after her physical and occupational therapy sessions, so I don't know if the vestibular system is linked to the limbic system, but all that spinning and rocking and twirling seems to unlock something in her emotional center.  We haven't had any major meltdowns lately, but she still wakes up funky after her long afternoon naps so I am curious if the EEG will show seizure activity during her sleep.


Each one of the children adds something so unique to the family.  I have lost any definition of "normal" a long time ago and continually ask God for His perspective on each child.   He knows the number of hairs on each one of their sweet heads and He alone knows what goes on inside each one.


Dominic was practicing his "pitiful face" because he said it helps him sell more Boy Scout popcorn.  Sometimes I ask the kids, "Do you want to be pitiful or do you want to be powerful?"  I had a dream the other night that someone had broken into our house and had trashed the place.  I thought, "This was a terrorist," because the only purpose was to instill fear.  Nothing was actually stolen. Then I read Mark 3:27 in the NLT: "Let me illustrate this further.  Who is powerful enough to enter the house of a strong man like Satan and plunder his goods?  Only someone even stronger---someone who could tie him up and then plunder his house."  Yeah, that's right!  Jesus kicked satan's rear on the Cross and it's His Kingdom that is advancing and taking over.  We can't be intimidated when we know the strength of our Defender and Protector, the power of our Healer, the intimacy of our Friend, and the joy of our Bridegroom King. We are safe in His hand that is tattooed with our names! 




Thursday, August 30, 2012

Beyond Circumstances


My children often remind me of what's really important.  Like giving thanks and breaking bread.  Here with their impromptu hamburger bun communion on the porch.


Yesterday Esther had a seizure.


Then today Antonio had the worst one of his life and ended up in the hospital.  (and contrary to what some people in Uganda believe, I promise seizures are NOT contagious!  I think this was just a stupid enemy trick that will no doubt be used against him.)


And I am thankful Esther's seizure happened in a bed surrounded by family and not in an orphanage crib all alone.


And while I really appreciated God providing a friend to act as an "ambulance" driver for Esther in Uganda, it was nice to have paramedics here who have oxygen and IVs and what not.


And God had my back as the big boys were home from work today and were able to hold down the fort until Grandpa came.  Gabriel knows how to remain calm in medical situations, probably from delivering so many goat babies at his friend's farm, or maybe from an early childhood experience when his big brother got pinned under a fence and he told Gabriel, "There is no need to get upset.  If I die I will just go to heaven and you will get all my legos."  


And Princess was the one who discovered both Esther and Antonio having their seizures first, which she said scared her initially but then when she saw that we weren't afraid she realized she didn't need to be either.  She has taken Esther under her wing and I can totally see her working with special needs children in the future.  


One of my favorite children that had some special needs died in Uganda this week.  JoJo was a precious little boy who may have been a "least of these" in the eyes of the world but was very significant in the Kingdom.  A friend in Texas had her children do a fundraiser to purchase a special needs stroller like Esther's for Ekisa.  


To me he is the face of Project Hopeful, who advocates for children with HIV and Down Syndrome (JoJo had both) and other special needs who need families.  After getting home from the hospital I took the little girls to the splash pad and I was admiring this beautiful mom's tattoos when she came up to me and said, "I'm not a stalker or anything...." (LOVE that intro!) "but I think I know you.  I work for Project Hopeful..."  She was from New Jersey! And she knew all about Esther.  And just so happened to be at a park a few blocks from our house in Iowa.  I think it was a kiss from Jesus to me to remind me that He had called me to this place, this time, I am in His will...and His peace destroys all chaos.


Blessing got to attend one of her favorite nurse's wedding.  She was so happy to see her hospital friends NOT in pajamas or hooked up to anything and her nurses in formal wear.  Blessing reminds us to be grateful for food and the ability to swallow and digest it.  And for God's ability to make all things new.


Esther's homeschool looks likes a lot of swinging and spinning at this point.  The next couple months are appointment packed and then I think we will back off some, content with being the "good enough" parent and letting God fill in the gaps.  There can be a fine line between trying to find the best resources for our children and striving to "fix" them and the difference feels like peace versus stress.  


Solomon is our man of peace.  He refuses to let "real life interfere with my imagination."  Faith requires us to see beyond "real" life to the unseen spiritual realities going on all around us. It takes the imaginative mind of Christ to see possibilities instead of just problems.  It's never just about cleaning up after people (what so many moms think their life consists of) or seizures or the mundane/insane circumstances we encounter each day.  There is a bigger story, Christ being formed in us, Christ in the eyes of the least of these we encounter each day, Christ filling all things in all ways.  


So we can be at peace and at rest.


And let His love destroy every shred of fear.  (Esther used to be terrified of water, she now splashes and plays in the bathtub!)


More than a preconceived idea of how my life should look, I want to know Him.  The power of His resurrection, the fellowship of His suffering.  I want to be love like He is, and I typically get stuck right at "love is patient, love is kind." (I obviously needed extra practice so God gave me more than the average number of children)  Praying you will see Him, broken and poured out, then risen and victorious.  His patient, loving-kindness is yours! 

I will not cause pain without allowing something new to be born, says the Lord  Isaiah 66:9 NCV



Wednesday, August 22, 2012

Walk this way


We have a new homeschool rhythm this year.  It involves a lot of outdoor play in the mornings because the weather has been gorgeous (notice the two big boys are missing because they decided to turn into men and get jobs and take college classes).....


And the kids know what I really value and will make provocative statements like, "We should really just work on our relationships and play games today."  


And because little Miss E and Ari take such great power naps in the afternoon, we can use that down time to be a bit more school-ish.


And potty-training counts as a subject right?!


Physical therapy hooked Esther up with a contraption to help her build her stamina and strength.


And I am not sure why this is, but Esther laughs and smiles a ton when she is laying down.  I don't know if it's because she doesn't have to work so hard or she can see or focus better or what, but I love thinking about how when I lay down and rest on the inside I can better focus on the face of my King Jesus and smiling flows freely.  


Because trying to figure out how to homeschool 15 kids of various ages and stages and abilities never really makes sense on paper.  But somehow there is always a strategy that works for the current season.  It's really important in this season that I have shiny nails to look at because listening to 7 little kids sound out phonics readers really stretches my inner ADHD girl.  


But thankfully we mix it up with lots of celebrations.  Like birthdays occur quite frequently.  (one of my kiddos actually called a family with 8 children "smaller-ish")


And proof positive that God uses the weak things of this world...as we headed off to the park today I suddenly realized I had forgotten Solana at home.  She kind of takes after her mom and was sort of flitting around the house in her own little world...


But we finally all made it and through much encouragement Esther walked longer than we had ever seen her go before falling.  She ditched her walker (and her shoes) and gave us a great visual aid of persevering in the course set before us.  We don't have to take someone else's path or try to keep someone else's pace, but as we keep our eyes fixed on Jesus He can guide us, keep us focused, and enable us to hear the Spirit say, "This is the way, walk in it."