About These Last Six Months

The last six months have been the hardest six months of my life thus far.  It wasn't any one thing, but there were definitely some things that have been harder than others, but even small trials seem harder to bear when there are big trials challenging you every day.

If you only want to read about the happy stuff in my life, scroll down....way down....

On the other hand, the article Your Painful Story Brings God Glory, by Laura Story, is what pushed me in the direction of sharing my struggles here.  I hope that reading what I have and am going through will help someone in some way, even if this post isn't an "I've made it through this trial" kind of post.  This is an "I'm in the middle of trials, but I know that God is here with me" kind of post.

In my last "real" blog post, I shared with you that Jessica and Jon had received a diagnosis that their little baby had Trisomy 18, or Edwards Syndrome.  Walking this road with them has been the hardest trial in my life thus far.  I watched as my precious daughter purposed to love Matthew and appreciate every day they had with him, never knowing when his last day might be.  I was privileged to go with them on several of their trips to Seattle to see specialists at both the University of Washington Maternal Fetal clinic and the fetal echo-cardiograms at Seattle Children's Hospital.  

Due to the generosity of a friend, they planned outings to make memories with Matthew on each trip!  I was able to go to the Woodland Park Zoo and walk around Green Lake.  We had lots of fun as we tried different ways of including a tiny little pajama outfit in photos to show that they were making memories of their journey with Matthew.  Jessica and I were busy knitting and crocheting everywhere we went.  She made the most beautiful little sweater set and blanket and I was working on some cocoons. There were highs and there were lows, good days and bad days.  Sometimes I grieved for myself and the grandson that I had hoped for, other times I grieved as I watched my daughter walk through this valley.  

Just over a week before they were scheduled to be induced, Jessica couldn't find Matthews heartbeat.  They had a borrowed doppler so she could listen for his heartbeat each day, especially if he was not moving.  They heard his heartbeat that morning, but after a nap they listened again and it was gone.  They headed to the local ER to confirm and found that Matthew had passed away.  Then they packed up and headed to Seattle to be induced.  I joined them the following morning after a sleepless night.  The induction lasted from Sunday night until just after midnight on Tuesday.  She was laboring most of the time, but the labor had times of intensity as well as times of rest. 

As her mother, it was so hard to see her labor in grief.  As a grandmother, it was hard to know that my first grandson would be born sleeping.  The silence of a labor room without a fetal monitor was profound.  More profound even was the moment of his birth.  As he was laid on Jessica's chest, I kept waiting for him to move, to cry, to live.  But that moment never came.  The intensity of this hour was nearly more than I could handle, I cried out to God to comfort them,  I grieved so intensely that physically I was falling apart.  I came very close to fainting, so I left the room.  I did not want to draw attention to myself. Their moments and memories of Matthews time with them needed to be about them, not me.  I figured that the nurses could scrape me off the floor in the hallway if needed.  I was able to make my way to a bathroom far from their room and cried my heart out in wrenching sobs. I have rarely cried this hard in my life. After a time I was able to go back to their room and marvel over Mathew's beauty.  His perfect little facial features, his tiny little hands.  Watching them lovingly and carefully dress him and wrap him up in a soft white blanket.  I stayed with them for a few hours, taking photos and listening to them and I even got to hold him for a while.

 So precious, so loved, so tiny, so still. 

Jessica has blogged about Matthew's birth in detail, if you want to read it go to her blog, Matthew's Life.
My sister, Lisa, lovingly made this photo collage for Jessica and Jon

Daryl came down to Seattle and arrived mid morning, and we were to drive our separate cars home, but together as I had not slept since Sunday morning and it was now Tuesday. I made plans with Sam, my daughter-in-law, and Cindy, a dear friend, to go to Jessica's apartment and do some cleaning there. In the weeks before Matthew's birth, Jessica had been sick with a fever for over a week.  I wanted them to come home to a clean apartment and have dinner waiting for them there.  The plan was for me to take a nap and then do the cleaning....but I was still unable to sleep and, by then, unable to stop crying.  I made a call to my doctor's office and requested sleep aids, which they did prescribe for me and have been invaluable to me since then, but I only use them occasionally.  I just could not make my brain shut down and when I tried to sleep, all I could think of was Jessica, Jon and Matthew and then I'd start crying again.  Working was therapeutic and I was so thankful for the presence of Sam and Cindy. Talking with them was so good for me. I stuck around until Jon and Jessica arrived, then ran a few errands for them, including buying Jessica a pretty, comfy nightie to wear as well as some pajamas for me - I had found rayon pajamas on a clearance rack!  It was such a blessing to me and to her as well.  Then I headed home and was finally able to get some sleep.  Over the next few weeks, I helped Jessica as best I could as she recovered.  She had a difficult recovery due to the long, difficult labor.  It was good for me to do this as it also helped me to begin to grieve as well as gave me some time away from home to rest and recover as well.  

Matthew's graveside service was held soon, and he was buried just inches from where our daughter, Johanna Marie, was buried.  There was something very special about God orchestrating this.  That day was also very hard.  To watch my daughter walk next to her husband as he carried the tiny white casket to the hole in the ground, and then later to watch as Jon and Daryl lowered the casket by hand into that deep, dark hole tore my heart. 

During those months of Jessica's pregnancy, Matthew's death and birth, I struggled in many ways. 

Physically I was challenged through sleep deprivation.  Christy had been put on oxygen at night to support her heart and lungs as she still has sleep apnea, and the echo-cardiogram had revealed that she has an un-repaired ASD.  She did not, and still does not, like wearing a nasal cannula.  She would fuss and cry.  Esther is very sensitive to her crying and it upset her.  If I was not in the room and Christy was fussing, Esther would first go to her crib and try to comfort her, saying over and over, "it's OK, it's OK."  Then she would come to my door and knock until I came out and cared for Christy.  This led to my staying in their room each night until Christy fell asleep...which was invariably after 11 pm.  Starting back in January, when I had been with Christy at Children's Hospital for her sedated dental work and MRI, I had aggravated my knee injury and did something to my back.  After a few weeks on crutches, my knee found a new happy place, however my back did not.  I mostly ignored my back pain until I couldn't stand it, then I'd go to the chiropractor and get adjusted.  I was dealing with back spasms every night, I just didn't know it.  I had also been struggling with what we though was an ulcer (since my ER trip the previous December), but just couldn't/wouldn't find the time to get a proper diagnosis.  Add to all that the daily stresses of caring for a large family and Christy's ongoing medical challenges.  Matthew's birth/death caused me to reach a physical crisis.  My stomach was raw, my back was causing nearly constant pain, and I was definitely dealing with adrenal fatigue as well.

Emotionally I was into uncharted territory for me.  I was a mess.  On top of grief and daily stress, I was dealing with imbalanced hormones.  I felt fragile.  I was definitely falling into depression.  I was having moments of something like panic attacks.  I was coming unglued so to speak.  I felt like if some new trial came, I would just break. I forgot to mention that this past summer, in August, I learned that a friend, Diane, with whom I had been extremely close for many years (but had drifted apart from her over the last 10 years or so), had committed suicide.  This was definitely also an emotional stress as I was grieving the loss of a friend and had many regrets of having allowed our friendship to dissolve.  We had been in contact occasionally, but hadn't connected as friends in many years.  As my emotional state began to deteriorate, I began having dreams about her, and this was adding fresh grief to my already unstable emotions.

Spiritually I am also a mess.  I allowed Matthew's diagnosis to derail me spiritually.  It's hard to describe, but it was like I had the spiritual reaction of how a child would react to getting a shot.  I recoiled.  I curled into a ball and refused to come out.  It is so hard to describe.  It's almost like I held tight to my grief, yet ignored it.  I hurt to badly I couldn't face it.  It felt as though God had hurt me.  I know this is not true, but that is the best way that I can describe where I was.  After Matthew's death and birth, it got worse.  My pain was so raw, my strength so low, that I just couldn't go there.  My quiet times were few and far between, and my prayers were too.  I knew I needed to reach out to God, but something inside me was not ready to let go.  I think it was the beginning of November that I knew something had to be done.  I made an appointment with my pastor.  I shared with him my ongoing struggle to get sleep as well as my spiritual situation as best I could.  I knew I needed to dwell on who I believed God to be, to remember His promises to me as His child.  When I got home I looked through my bookshelves to a devotional that Pastor Mark had recommended and that I knew I had.  I was unable to find it but I did come across a book that I had no idea that I even owned!  Some time, I have no idea when, this book came into my possession, but I had "shelved" it.  It is a book by Kay Arthur, "God, How Can I Live."  I knew that God had meant for me to find this book at this exact moment.  That in and of itself was more comforting that I can tell.  Since then Pastor Mark has also given me another book that also has been very helpful, it is called "New Morning Mercies" by Paul David Tripp.

Here are some quotes from "God, How Can I Live" that have been particularly helpful:

"Thus (after quoting James 1:13) when adversity comes into your life, precious one, you can rest in the fact that first it had to be filtered through His sovereign fingers. And those are fingers of love, for God is love...."I can't understand it. It doesn't seem fair!" Is that what you are thinking? Remember, God's ways are not your ways, His thoughts are not your thoughts. Faith submits, taking God at His word and resting in His Character."
And after talking about Job chapter 1:
"O precious child of God, are you in great travail of soul because of some adversity? Fear not! Your Father is filtering it all through His fingers of love....Trust in Him, and it will result in good."

Do you realize what peace would be yours if you would only believe what God has said and bow your knee in humble, trusting thanksgiving. Then you would cease replaying bitter memories of horrible days gone by - days that have been overruled by His promises and His sovereign rule. With a touch....they have been turned to good - your eternal good.....May God grant you the blessed ability to see all of life through the prism of His infallible word.

Our tragedies are permitted for two reasons: that we might become more like Jesus and that others might see the reality of our God and long to know Him as we know Him. 2 Cor. 4:11
The more trials we experience, the more we become like Jesus, if we appropriate His grace. Therefore, all of life, whatever it brings, prepared us for eternity.

I wanted to share my journey with you now, before I am on the "other side."  In the past I have always blogged about good times, fun memories and such.  But I think it is important for people to be transparent when they are going through trials.  Reading about Kay Arthur's trials and hearing of trials of others can be comforting, especially when you hear how God is comforting them in the midst of their difficulties.  Since that low point in November, I have been working to find the source of some of my difficulties.  I have found some things that have been helpful, but if my lowest point was a minus 10, and being strong and healthy is a positive 10, and being just OK is zero, I vary between a -8 and a -4 now.  It doesn't take much ( a few bad night's sleep for example) and I find myself crying whenever I am alone, again.  I have days where I can feel God's presence, but most days I still feel that I am in a spiritual battle ground and that I am losing the battle.  Since my low point, I had taken a fall (literally) and have aggravated my knee injury.  My back pain reached epic proportions and I ended up going to the urgent care clinic.  I have since been on 12 hour prescription pain meds, muscle relaxants and I am now going to physical therapy.  My chiropractor and my physical therapist have been able to get my back into alignment, but it goes back out easily.  My L5 disc is the source of my problems, and needs to heal.  I can't sit in church or in an upright chair for more than a few minutes without my back going into spasms.  Also, my stomach is still causing me pain, mostly at night but also when I am upset about anything (for example, my back pain often causes me to feel nauseated which leads to stomach pain...).  I had an endoscopy done and the preliminary result was erosive grastropathy...basically the lining of my stomach is eroding away.  I won't know the cause of this (it could be viral, bacterial or just the result of constant stress) until the biopsy results come in. But there is some comfort knowing that my stomach pain is not my imagination!  

For the first time in my life I am dealing with multiple physical ailments, two of which are the most debilitating I have ever had (my knee has been worse before).  Any of the three can cause me to not be able to sleep or function at a normal level during the day.  I am also dealing with anemia (could be caused by my stomach problem as it can inhibit absorption of nutrition) and low immunity/recurring infections (7 rounds of antibiotics in the last 8 months, two for a jaw infection after getting a tooth extracted, the rest for recurring sinus infections).  I take dozens of natural supplements to try to help with these ailments, but I don' seem to be making any headway (I am currently on antibiotics again...).  Emotionally I am still up and down....sleep deprivation plus grief as well as dealing with nearly constant pain can really get me down at times, especially at night.  

Wow, this is such a downer blog post!  Oh - and I forgot to mention that Dayton (11 years old) had his appendix burst and had emergency surgery on Thanksgiving Day, and spent four days in the hospital!  He is doing great though.  For that I am more than grateful!  Daryl was able to stay with him nearly the entire time, as I was still dealing with my latest sinus infection.  And, we have had two stomach bugs run through the family as well as two different colds in the last three weeks.  Currently all four little girls are sick with a bad cough, Carese is the worst at the moment, running a fever all day yesterday. Christy showed signs of coming down with this cold yesterday.

I hope to blog again regularly and keep you updated as to what God is doing in my life.  I keep reminding myself of what I believe about God:

God Loves Me, enough to send His Son to DIE for me!
God knows what is best for me
Every trial comes into my life after it is filtered through His loving hand and is for my good and His glory.
God has this - He is in control, nothing surprises Him. 
God has a plan for my life and my family - to prosper me and not to harm me

I know that my heart will follow where my mind is, so I know that if I dwell on the truth of God's love for me and His promises, I will eventually begin to feel it in my heart and soul once again.

***You MUST read my blog post, Into Darkness and out by Grace to get the whole story...all that you just read did not bring me out of the darkness and depression, it only gave me a short, partial relief...I went back under. But the story doesn't end there!  PLEASE READ!***

So - time to look at the bright side of my life! In the last 8 months, there have been some good times.  


In July I got to spend the day with Jonathan, riding in his big truck!  It was a fun day, and I was surprised how different things look from 10 feet off the ground!  It was also enlightening what truck drivers have to deal with and I am more considerate of semi-trucks on the road now!


Last July we had a work party here where friends came over and helped us put more of our land into lawn, paint and clean up the front of the house to prepare for a new appraisal in hopes of getting rid of our mortgage insurance.  It did pay off - our appraisal came in around $30,000 higher than the last time!  

While we weren't able to do exactly what we had hoped, we got to do something even better - refinance our mortgage, with a lower interest rate and cut out three years (went from 23 years left to a 20 year mortgage).  Our monthly payments will be lowered by roughly $400/month.  We close on our new mortgage in just over a week from now!

We started watching Once Upon A Time (OUAT) last summer, and found out that it is filmed just across the border from us!  I have been able to go to Steveston, B.C., AKA Storybrooke, and watch the filming three times now. 

The last time I got to meet Robert Carlyle (Rumple Stiltskin in OUAT, as well as a villain in a James Bond film!), get a photograph with him as well as getting his signature on a OUAT playing card that I bought in Steveston! 



 We had a party at the boys' apartment where we all chose a character and dressed up, then we streamed the season premiere!  

We had a great time, but Carese was a little freaked out at my "new look"!  Daryl still dislikes the photos of me dressed as Regina/The Evil Queen!  LOL!  Rebekah dressed as Zelena was the most accurate and mind boggling imitation!  Zelena is the Wicked Witch from Oz in OUAT.

Christy Update:

Christy celebrating her 5th birthday, August 5

Christy standing
all by herself!

Christy had some testing done in October.  Her echo showed the same as what we saw last spring, so that's OK.  Her hearing test showed that she has perfect hearing. Her MRI showed that her brain and its vessels are stable, and that was very good.  

Christy LOVED being in the pool this summer!
She also did great camping for an entire week!

We have now finished all the testing that needed to be done since she came home.  She will only need to go to Children's for periodic evaluations for neurology and cardiology and possibly dental work.  She had a dental exam this fall and her teeth looked great!  She even lost her first tooth about two weeks ago! I was not expecting that to happen already! She just doesn't seem old enough to lose teeth, but at nearly 5 1/2, she most certainly is!  

She continues to be a daddy's girl, but does snuggle with me on occasion!  She has recently began to put her left arm through her sleeve when she is getting dressed, and this is a huge milestone for her...she has always made getting dressed and undressed as difficult as possible.  

She now has a stander (she needs to be bearing weight to build bone mass and core strength. We found out this summer that her hip sockets are not fully formed so she is at risk for dislocation), a walker (on loan, but one has been ordered for her) and enjoys running around the house in it. 

 We also got an adaptive stroller for her since she has outgrown most strollers now - she grew 4 inches in the last year!  I also just sent in an application for handicapped parking permits and I am looking forward to being able to park closer to buildings when I have her with me!

Esther has had a very healthy summer and fall.  She has weathered a few colds.  She continues to communicate through sign language, but she knows hundreds of signs now.  She understands everything you say to her.  She loves to sing, especially songs in movies like Frozen!  She LOVES Once Upon A Time, especially the bloopers!  She will imitate every motion from those and it's hilarious!

Other milestones in our family:

Rebekah got her driver's license this summer, Rachel is working on getting hers.  Both girls are working a temporary job for the holidays, working for a former classmate of one of my siblings, at the Lights Of Christmas at Warm Beach.

Reuben has been working at Perry Pallet since early spring and will probably get his driver's license this week. 

Reuben and Rachel are gearing up for another great season of Bible Quizzing and both hope to be able to go to Nationals again this year!

Daniel is growing like a weed and has become my right hand man at home since Reuben is gone so much.

Dayton is doing better in school this year and loves to play with his Legos

Elizabeth is going weekly to a friends house and gets to ride horses!  She loves this!  She is a big helper for me, especially right now with the big girls gone on the weekends!  She got braces earlier this year, but has them off already and has a special retainer that is helping with her lower teeth.

Carese is growing and is such a big talker.  Some of the things she says are hilarious!  She is a climber and seems to always have a bruise or two from falling while balancing on something!  She is such a mommy's girl.  She loves to go places with me, but gets panicky if she thinks I am not at home.

We've had some good times in the midst of our hard times, and for this I am so thankful!  I have so many blessings to be thankful for.  It's hard for me to share hardships, and to share with others when I am hurting, especially when I am in the midst of things. I love to share how God has worked in my life in the past and how He has done wonderful things and shown Himself to be faithful.  It seems like I am so slow at growing in Christ when I can still be so slow to run to God.  I am re-reading Stepping Heavenward for the eighth time now, and find such wonderful truths there, as well as challenges to look to God and focus on living for Him each and every day.  I fail so often.  Elizabeth Prentiss, the author of Stepping Heavenward wrote the hymn, More Love to Thee.  Her little novel and all her written works prove that this was her goal in her life.  I want to make it mine, but I seem so often to forget that I even want to love Him more, and end up being self absorbed and throwing my own pity parties.  More often of late, especially when I can't sleep at night, I am crying out to God, and I know that this is His doing, His calling to find comfort in Him.  For He is the only true place of comfort.

So, if you think of me and my family in the weeks and months to come, please pray that we will all seek Christ, run to our Father, bend our wills to His, and above all to bring Him glory through it all.

Christy Has A New Toy!

I know, it's been forever since I blogged.  I promise I will resume soon, but the last 5 months have been some of the hardest months of my life.  I know the last time I blogged I posted that our daughter, Jessica, and her husband, Jon found out that their little one was diagnosed at 20 weeks gestation to have Trisomy 18.  Jessica began blogging about her experience, and I recommend that you check out her blog, Mathew's Life.  Matthew was born sleeping on Oct 6 and he was a beautiful, tiny little baby.

The reason for blogging today is to share with you (and her therapists) how well Christy is doing in her walker!  This walker is on loan from Peace Health Children's Therapy where she recieves Physical and Speech therapy on a regular basis! As you can see from the videos, she has grown taller in the last few months and has new knee braces that allow for bending but make it very hard for her to hyper-extent her knees.

This first video she has the wheels all locked so she can only go forward and has slight resistance and she can not turn:

This video shows her "free wheeling" where all wheels can turn/go forwards and backwards and no resistance

This last one is her going away from the camera with wheels locked as they are in the first video

A Wedding, Hospital Stays, MRIs, Pregnancy and more....

In the entire time of my blogging career, this has been the longest absence of posting.  I have missed it, but I also have been in a new place that left so little time for the computer.  A big part of the problem is I no longer has a laptop, it died, may it rest in peace.  We do have another laptop but it just doesn't feel like mine, and I like my new life without a laptop between me and my family.  I do have a little 7 inch tablet that can help me check emails, stay in touch through Facebook and do some business stuff including banking, and for now this seems to be a good place.  But I do miss blogging.

Why do I miss blogging?  I miss it because it is a way for me to review my life that is passing by so quickly that before I know it, 6 months has flown by!  And so many seemingly unimportant things may go by without notice.  I also love to blog because then I can share things with my family someday, and I like to go through my blog to remember when things happens and maybe to help me remember details that I have forgotten!

So, here I am, going to try to do a fly over of the last 6 months, and it's going to kill me be brief.  I so wanted to devote an entire blog post to Jessica's wedding, but it just isn't a reality for me right now.

For my readers who like the sweetened condensed version, here's my outline of the first 6 months of 2015:
January - Jessica and Jon's wedding, Christy's sedated MRI/dental work, Seahawks Mania!
February - Crutches, more Seahawks mania, finding a new normal (not very successfully), Jessica's Pregnant!
March - Both girls hospitalized, everyone sick in one way or another, results of the MRI (she has had a stroke, probably around the time of her heart surgery at 18 months), 30th wedding anniversary
April - I have no idea...other than I was so sick I was basically bedridden for 3 weeks and implementing new protocols for reducing Christy's risk of another stroke and Christy's sleep study and hip exrays, Reuben starts a part time job. Rachel and Reuben go to Pennsylvania for National Bible Competition.
May - Sick again, but not as long,  Rebekah get's her driver's licence, Christy get's a crawler, and a stander is ordered.
June -  Jessica's 20 week ultrasound (baby has problems), Reuben gets a second part time job and starts driver's ed,  Christy's cardiology and audiology reports, as well as a consult with an orthopedic doctor about her hip exrays, plus the sleep study results, Christy starting on oxygen at night.

So, here's some more detail about each month, but I'll still try to keep it to a minimum:

January

Jessica and Jon had their rehearsal and dinner on January 2nd, the night before their wedding.  We had spent a couple of days previously decorating the church sanctuary, gym and foyer.  It turned out beautifully!  It was so much work, but it was worth it.



The rehearsal went well, and we had a nice dinner, and then the children and I sang a song for Jessica.  I had written words to the music for "Broken Hallelujah" that talked about her life, and these new changes with her getting married.  She cried and everyone enjoyed it.  I was surprised, I thought it was more funny that poignant, but I'm so glad I was able to do it even though we had only practiced a few times!

Jessica's wedding day started off ahead of schedule.  We were ready to leave before it was time to read, so we sat down and played a few rounds of our favorite card game, Nerts (it's like speed+solitare).  Then it was off to the church and the mad dash of getting everyone and everything ready.

Jessica made the most beautiful bride - she looked like a princess!  The bridesmaid dresses that Jessica had made for everyone turned out amazing, as did the flower girl dresses.  I did the hand sewing for the dresses and made all the flower arrangements (with some help here and there).

When it was time for her to come down the isle, her wonderful husband to be was overcome with emotion, as were most of us!  They had worked so hard to have a courtship that honored God, and an engagement that drew them closer together yet saved even their first kiss for this special day.


The ceremony was beautiful, and the music was amazing.  The pianist was my dear friend, Ilsa, who also taught me to do the flower work!  She also made all the bouquets, even Jessica's, which was a work of art!

After the ceremony there was photographs, and a video of photographs of them growing up and their courtship and engagement.  They had their first dance, and we played some games, and then before we knew it, it was time to them to ride off into the sunset!  No regrets, a most beautiful day indeed.

And the best part for them - a honeymoon spending 10 days in Hawaii!  Oh my it was hard not to be jealous since I've never been there!

And then we were back home, without Jessica, trying to find a new normal.  I really have no idea what went on much back then, only that the girls had their therapy, Rebekah was still working on learning to drive and we were working to find a new way to function without the push of a wedding to put on.

Christy had an overnight stay at Children's to have  sedated dental work and a sedated MRI.  We got a call very quickly after the MRI as the result they said were very interesting and that they indicated that she had suffered a stroke sometime around when she had her open heart surgery.  They referred us to the neurology clinic, and set up appointments with a specialist there who works with children who have her type of stroke (vascular anomalies).  More on that later!

One thing that we did a lot of was going to the big boy's apartment to watch the Seahawks game - and they were playing so well in the playoffs!  I even had my nails done special as the Superbowl approached!

Here's a highlights video of Jon and Jessica's wedding - hope you can take the time to watch it!

Jon and Jessica Wedding Film @ Spring Creek Bible Church from Greg Thames on Vimeo.

February

Things began to fall into a routine,  except that my old knee injury started to flare up.  When bringing Christy from her hospital room to the car after her overnight stay, I had pushed her heavily ladened strolled while carrying my luggage.  The extra weight aggravated my knee and I ended up on crutches again for 3 weeks.  YUCK!  Thankfully, with lots of icing, rest, elevation and patience, it settled down and I was able to get off the crutches...next time, as the doctor said, I might end up needing surgery.

Jon and Jessica were back home and she was coming out to the house to work once or twice a week. We planned the best Superbowl party ever, at least for our family...oh yeah, it was the first time we had actually planned a Superbowl party!

It wasn't long before we found out that Jon and Jessica were expecting a honeymoon baby!  They were overjoyed as they were hoping to get pregnant right away!  What a blessing!  But the tiredness set in quickly, and she began to cut down on how often she was coming out to work, so Rebekah, Rachel and I were working together to make up for some of her lack of working by doing some of the shipping.

We also took Christy down to Seattle to meet with the neurologist, Dr La-Fond.  She was amazing.  She took a long time explaining to us what they saw in the MRI, and showed us the images.  We were shocked at the extent of damage - about 1/2 of her brain on the right side is just gone - nothing there.  She said that the type of stroke that Christy suffered was from a clot forming in the heart and going to the brain, causing a blockage and lack of oxygen.  She also explained that when the brain is damaged and the tissues are dead, your white blood cells come in and clean house - leaving nothing behind.  A vacancy.  This vacancy allowed her ventricals to dilate into the open space, but this was not concerning to her.  What does concern her is that the vessels going to the right brain are smaller than those going to her left.  This could be just the way it is, or it could be a degenerating situation.  Christy will be having another MRI in October to see if there are any changes.

The darker grey on the right side is where the
brain is gone.  The black part is the ventricals
that hold the cerebral fluid

But what did this mean for Christy?  It means that we now need to work to reduce her risks of having future strokes, as she is at a higher risk since she has had a stroke.  Her heart repair also puts her at higher risk.  So the things we work to avoid are dehydration, illnesses (especially chicken pox, which we have had her vaccinated for now) fevers, and low oxygen levels.  She also gets 1/2 a child's aspirin once a day to reduce her likelihood of forming a clot, as due to a heart defect/repair, the abnormal blood flow can lead to clot formation in her heart.

So we had to get serious about her getting her fluids.  This meant we really needed to go to night time feeds.  So we got a wedge, and I created a "sling" that holds her in the general position of staying on the wedge and we starting giving her 2 cans of formula at night.  We tried to give her the additional 400 mls of water, 1/3 after each meal, but it just was a hassle, so now we give that to her during her naps.  This has worked very well and has been the best solution for her getting her fluids consistently.

Oh - and that G-Tube?  It was going great, until I nearly pulled it out the night before Jessica's wedding, but it pulled hard enough to cause bleeding, and that later developed an infection.  But a round of antibiotics (oral and topical) did the trick.  The infection tried to come back, but I caught it quickly and it only required topical antibiotics the second time.  Then I heard that organic bamboo velour can be a life saver with G-Tubes and reducing the incidence of the development of granular tissue, so I made a bunch of G-Tube pads using that and we have had no problem since!  Much better to prevent the granular tissue than to have to deal with getting rid of it.  Although we did have great success at using Granulotion to get rid of granular tissue when we needed to.

March

Things seemed to be going along nicely and them WHAM!  Sickess hit.  And this was a bad one.  For the older members of the family it was a really bad cold with a cough and freaked me out.  I heard Daniel in the bathroom coughing and coughing and coughing and not able to clear his airway and I thought, "This could kill the girls!"  Elizabeth got it and she had that terrible, difficult to clear the airway mucous too!  And then Christy got it...and then Carese, and then Esther.

Christy ended up in the hospital, starting Saturday night, after about 4 days, with a double ear infection and pneumonia.  She tested positive for RSV.  I stayed with her the first full day, but during that night I became violently ill with an intestinal illness and had to go home.  Daryl and I passed in the night on the freeway as he took up the hospital vigil while I went home.  The next day I could barely walk to the bathroom I was so weak.  Tuesday was only slightly better, and then I became aware of how sick Carese and Esther were.  Wednesday Esther took a turn for the worst and by evening I took her in. They admitted her and she got to share a room with Christy.  Esther, however, was not as sick as we thought, and after a night of oxygen, she was fine all day without it.

 Christy was finally doing great, but still needed oxygen whenever she slept.  Thursday night was no difference for either girls.  Friday both were ready to go home, but Christy still needed oxygen, so they sent us home and had Norco bring out supplies for giving Christy oxygen at night (a first for our family).  It went well, and after a few nights she no longer needed it.  And that pretty much brought us to the end of March before we were all done with breathing treatments and antibiotics for the girls.

We were all just recovered enough for Daryl and I to get away for three days/two nights to Victoria B.C. to celebrate our 30th wedding anniversary!  I was such a sweet time of site seeing, movie going and even a little walking/hiking!  We had a great time and it was such a blessing to have that time together with me healthy, if even just for those few days!

April

April is pretty much loss for me.  I was down with a sinus infection that caused profound dizziness and incredible headaches.  After suffering for 10 days, I went to the doctor and got on antibiotics.  While they helped remarkably after about 3 days, as in my massive headaches were gone, I dealt with debilitating fatigue and dizziness so I was pretty much useless and spent most of my time in bed for the next 8 days or so.  So April was pretty much a write off for me.

I was healthy enough (barely) to bring Christy to Seattle for a slew of clinic appointments and a sleep study.  It all went well, and this time we did not get a call right away about her sleep study, so that was good news too.  We would have to wait until June to get the results...that is a very long wait!  While there we met with a rehabilitation therapist.  She went over Christy's history and evaluated her needs.  She gave me some great resources and ideas and also had us get her hips exrayed.  These exrays revealed that her hips are not properly developed and she is at a risk for dislocation.  This condition is very common in people who have Down Syndrome, so it wasn't a huge surprise.

The last week on April, Reuben and Rachel flew to Pennsylvania with their respective teams to participate in the Nations Bible Quizzing Competition. They had a great time and both did very well.  Reuben was awarded top quizzer and top memorizer for our counties teams, and Rachel was in the top 15 quizzers too!  Rachel memorized 211 verses and Reuben memorized over 400 verses.  It's a great way to get kids to hide God's word in their heart.  I've had at least once child doing Bible Quizzing (sponsored by Teens For Christ) for over 15 years now!

May

May 7, 2014

May 7, 2015

May 7 we celebrated Christy's "gotch day".  That was the day we brought her out of the group home.  March 17 marked one year since she came into our home.  She has grown so much and learned so many new things in the last year, it is truly amazing.  She is amazing!

Another huge milestone in the month of May was that Rebekah got her driver's license!  She had elected to wait to get her permit until after she turned 18.  She has had her permit for about 18 months, but due to logistics it took her a long time to get enought practice in, what with the adoption, hospitalizations, holidays and the wedding!  We are all happy to have another driver in the house again!  It is so helpful!!!!

Also, Reuben started working part time at Perry Pallets, where our son Jonathan drives as a commercial truck driver!

Just a little ways into May and suddenly all the symptoms of the sinus infection were back, but this time I only waited 2 days to go in.  After taking the stronger anti-biotics for 48 hours I was noticably better, and was back to nearly normal within the week.  The stronger antibiotics were hard on me though, and it took a few weeks of probiotics and antifungal stuff to get me recovered.  By the end of May I was no longer believing that I would never have energy again, and had moments of feeling healthy!  There was hope!  I realized that our intensely crazy, stressful blessed year had taken it's toll on my health and I needed to work to regain my immunity and health! So that's what I have done!

During May Christy had gotten new, better let bracing and had been doing some standing and some practice walking with lots of support.  Her physical therapist was able to loan us a "crawler" and Christy is beginning to figure it out.  It would help if I could get her in it more regularly....This therapist also has been working to get a special stand-to-sit type of stander for Christy so she can spend more time each day bearing weight so she can get stronger leg bones and build her leg and core strength to further prepare her for walking!  We are still waiting for this, but it should be arriving soon!

June



On June 4, Jessica and Jon went in for their 20 week ultrasound.  They had been planning a home birth, but had opted for an ultrasound to make sure that a home birth would be OK for their baby.  The ultrasound revealed several problems for their baby.  She called in tears.  So hard!  They said that they say cysts on the babies brain, a possible club foot and what they did see of the heart was not normal.   They said they suspected Trisomy 18.  She blogged about this day on her new blog, Matthew's Life

We all cried and cried as we tried to wrap our brains around this.  That first weekend was so difficult.  Saturday night after going to bed, I cried and cried - seemed like I would never stop.  That was my low point.  I continued to have times when I was weepy, but they came less and less.

They were referred to a specialist the following Tuesday.  I was able to go with them and see the ultrasound. They confirmed what the first ultrasound showed, and saw a better image of the heart.  Their baby had a VSD, an ASD and an AV Canal defect.  Even though they tried, they were unable to determine if the baby was a boy or a girl.  They decided to get a blood test to detect fetal DNA, but the test takes a week to get results.  This test would also tell them the sex of the baby.  Jon and Jessica now wanted to know so they could name their baby and begin to bond better, and to cherish this baby each day that they could. You can read her writing about this day on Matthew's Life too.


Life at home during this time continued to be busy, and we began our summer break from school (not that we had been doing school regularly, but I finally decided to stop beating myself up about our lack of schooling for a few months, next year will be better, right???)  Rebekah and Rachel had planted a garden and it was coming along  nicely.  Reuben is now working 2 days a week learning construction as well as three days a week at Perry Pallets.  He also started Driver's Ed on June 16, so he is either working or sleeping these days it seems!

The day after Jessica's appointment with the specialist, Daryl and I took Christy and Esther to Children's.  They both had hearing tests, and Christy had a cardiology appointment and a consultation with an orthopedic doctor to discuss her hips.  They both had overall good hearing tests, but there was some concern about Christy's right ear, so they are going to repeat some of the tests when she is sedated for her next MRI in October.  The audiologists recommended that Esther gets more speech therapy to enable her to communicate better.  Her signing is really growing, but her verbal speech has not improved much until just recently.  She can now say nearly all the letters of the alphabet when she's watching the Signing Time alphabet video!

Christy's Echocardiogram was much clearer this time compared to last year's.  It revealed that she has an unrepaired ASD (they repaired one) and that her AV Canal repaired valves are leaking a bit.  This doesn't mean she needs surgery, but in light of her sleep study (she is doing better, but not good) she is now getting oxygen at night.  She will have another echo during her sedation in October to see if some of the blood flow problems were related to her stressing about having the echo done.  But fo now, neither of the girls have any planned trips to Children's...yay!

On Wednesday Jessica and Jon got the results of the blood test (it's call a free cell test, or a Panorama test), and it showed that they are having a little boy and that he doess test positive for Trisomy 18.  While the test in and of itself is not conclusive, when compared with the ultrasound findings, it's a definitive diagnosis.  I'm sure Jessica will be blogging about this anyday now!

Also on Wednesday I was able to finally get the results of Christy's sleep study way back in April.  While her numbers have improved, she still has mild obstructive sleep apnea.  This combined with the new Echo information means that it would be best for her heart and lungs if she would get supplimental oxygen while she sleeps.  She reached as low as 84% oxygen saturation during the sleep study.  So this is now our new normal.  So far, she doesn't like it, and it takes longer for her to fall asleep and I need to check her after she falls asleep to make sure the nasal canula is in the right place, but I'm sure she will eventually get used to it...untill then, please forgive me if I fall asleep while talking, writing, or anything really!

Last week Daryl's spring project finally got use!  He has been working to build the ultimate swing set.  We got the tubing at a garage sale last summer, and after lots of planning and welding and lots of heavy lifting, it made it into the yard and we got some chain and go the swings in place.  We do plan to get proper attachments at the top and plan to have some swivels for using a proper tire swing and hammocks and other therapy type swings in the future!  Also last week Reuben started Driver's Ed!!!

On Father's Day we had Christy dedicated at church.  It was amazing.  Our pastor's prayer was such a blessing, and he shared a little of Christy's life and how God had worked in amazing ways to bring her our of Bulgaria and into our home.  Such a sweet Father's day!

On Monday, I went with Jon and Jessica to Seattle for their appointment with the OB at the University of Washington Fetal Maternal clinic to discuss the results of the blood test.  They had lots of questions and the doctor carefull answered every question.  She was gentle and compassionate and we all felt like she was a great person to work with.  They also met with a genetic councelor  who did an amazing job of explaining trisomies in general, and I even learned a few things!  The best part of the day though, was that we got to eat lunch with the Merry Family.  We had connected through a mutual friend and a Facebook group.  They have a little girl who is 9 months old and has full Trisomy 18.  We even got to hold her!  Todd and Molly are fellow believers, homeschoolers and they ministered to us all and answered so many questions from the perspective of having lived through the process of carrying a child with such a dire prognosis.  Todd and Molly even prayed with us, and what a blessing that was!  You can read about their journey with Vivien on their blog, Merry Musings

WOW!  No wonder I feel like I've been in a whirlwind for months now...The last 6 months have probably been the most intense, most stressful months in my life to date.  And that is saying a lot! And it doesn't seem to be letting up much in the near future.

There is still an entire week left in June, but this blog post is so overdue, that I am not going to hold it up over formalities!  Who knows, maybe I'll even blog again before the end of the month to fill in the things I forgot about today!

Let me end on this note.  Please pray for Jessica and Jon and our families as we walk this difficult road of planning for the possibility that their precious little Matthew will spend very little time in their arms, while hoping for a better outcome.  Pray that we will all experience God's grace and compassion like never before.  I've been through a lot with my children, even a 20 week pregnancy loss, but what they face seems from this view to be even harder.  But our God is a big God, and this is not  a Chance occurance, a random fluke, this isn't what LIFE has thrown our way.  This came to us filtered through the loving hand of our Heavenly Father, and He does all things well.  This is for our good and His Glory.  Jon and Jessica are praying that through Matthew's life, not matter how short or how long, will bring glory to God.

I can not say this loud enough, long enough, or often enough....

Every Child is a Blessing, no matter their abilities, no matter the length of their days, no matter their appearance.  

Every Child is a Blessing.  

We only fail to see that they are a blessing when we no longer see them as an eternal being created by the Hand of God Almighty. 

 If we see them as a burden, then they will seem to be a burden.

If we look through the Father's eyes, and into eternity, then we will see the beauty in every child and the blessing that they truly are.