Ry Guy

My Ry Guy turned two today!  These past two years have flown by, yet I also feel as if I've lived several lifetimes since he has been born.  Every once in a while, I like to do a post all about one of my boys--their milestones, personality, etc.  This seemed like a good time to write about Mr. Ryan!

Ryan is a joy.  He is such a happy little guy and has so  much personality.  He loves to giggle, always has a smile ready, and is so smart.  He communicates very well, it just so happens that hardly any of his communication is verbal.  He knows a lot of signs (more, please, stop, all done, potty, poop, break, hurt, water, milk, eat, help, sorry, scared, cold, please, thank you, and I'm sure there are a few more).  He uses all of the signs appropriately, which is so helpful!  He is such a smart little boy and knows how to get his point across with or without words!  He does have a few words that he uses on a regular basis--Mama, Dada, Noah (Doooh!), Pop-pop (for the bunny), Pa, Papa, Thank you, go, ow, Mommy, hot.  He also can tell you lots of sounds for animals, cars, and people (If you ask him what Anna from Frozen says he will click his tongue like she does in the movie).

He has such a funny sense of humor.  If you ask for a "mooch"  (a smooch), he usually won't do it, but if you say "Don't you kiss Mommy!" he puckers right up!  He also likes to toot and blame it on other people.  Such a stinker (in so many ways!).

Ryan loves:

eggs
to hop like the bunny
to wrestle his brothers
the movie Cars
popcorn
potato chips
clementines
doggies
to kiss Carolyn
giggling
playing guitar with Daddy
teasing
The Pout Pout fish books
being sung to, especially Jesus Loves Me and He's Got the Whole World in His Hands
going down slides
Choo-choos
Chipotle

My sweet Birthday Boy today!

 He barrels through life, and this picture cracks me up!  No fear at all from this guy!

Third Mom

"A child born to another woman calls me mom.  The depth of the tragedy and the magnitude of the privilege are not lost on me."  Jody Landers

This quote has been on my mind this morning.  The foster care journey we have been on has meant that I've had seven children call me Mommy over the past year and a half that I never gave birth to.  What a joy and a tragedy all at the same time.  The two little girls that lived with us for almost a year, of course, called me Mommy.  Little Miss T still calls me that when I see her.  Oftentimes, her mom is with us.  She calls her birth mom "Mom" and me "Mommy."  A little confusing at times, for sure!

We had the pleasure of doing respite care for a sweet 8 year old girl for several days this summer while her foster mom was sick.  She was old enough to process, to some extent, everything happening to her.   She began to call me "Third Mommy."  Her birth mom was Mom #1, her foster mom was Mommy-Tammy and I was Third Mommy.  Even though she was only in our home for a few days, the bond grew quickly.  I cared for her, cooked for her, tucked her in, washed her clothes, reminded her to brush her teeth, comforted her when she fell, instructed her, laughed with her, listened to her, and much more.  I was her "third mommy" for that brief time.

We have two little girls staying with us now for ten days.  I have watched them about once a week for the past two months.  They are really sweet.  I've always been Ms. Sarah to them.  But something happens when you tuck a child in at night, and greet them the next morning.  After only 24 hours in our home, I began to be "Mommy."  Right now it's a mix of Ms. Sarah and Mommy.  I always refer to myself as Ms. Sarah, never Mommy.  I would never presume to take that title on for myself.  But yet, I won't correct them if they do call me Mommy.  They need to feel the comfort and love that comes from using that word and having someone respond.  I feel so privileged that they do.  But yet again, they have their birth mom, who they got to spend a few hours with yesterday; their foster mom, who they call Mommy as well; and then now they add me into the mix.  The third mom.

I've never had to experience life without access to my mom.  She is always there, always ready to listen, and has never NOT been there.  I do understand the prospect of having two moms, because of my wonderful Mother-in-law.  I have experienced the joy of knowing there are two women who love me, care for me, and are always available.  The tragedy that these children experience of not having access to their  "#1 mom" is incomprehensible to me.

Grant and I have decided to take a step back from full-time foster care for the time being.  Grant has one last year of grad school (woohoo for his SECOND Master's almost being done!) and that comes with an internship.  We are taking time to breathe, rest, restore and build the bond between our three boys for at least this coming school year.  We are, however, planning to do respite care.  We will step in and fill in for foster families when they need a break, take a trip, get sick, etc.  In essence, being a third mommy and daddy for these kiddos.  So far, it has been the best of both worlds.  We get to care for the kids, keep a hand in foster care, help out the families that are stressed and living in the trenches of foster care day in and day out.  We know how hard that is.  But yet, we can choose the schedule and that allows for lots of family time.  I am looking forward to this year and seeing what it brings.  I don't like the fact that so many children need, or have, third mommies, but I'm willing to be  one when necessary, whatever that looks like.

Stress Test, Preschool and a Violin

My sweet Noah-Boy has been having a busy week--and it's only Tuesday!  Yesterday, he got to go to the "heart doctor."  I say "got to go" because it has been a countdown for the past several weeks.  He hasn't been feeling the greatest lately, and has been asking to see the heart doctor.  Dr. Jefferies was, as always, wonderful and listened very closely to what Noah wasn't saying (he didn't say a word and was very withdrawn and very un-Noah-like) and closely to what I was saying.  Noah's stamina has decreased:  he's napping more (even asking to nap), choosing sedentary activities more frequently, needs to stop and rest during family evening walks, etc.  He also has been having a lot of chest pain, and is cold most of the time.  Dr. Jefferies asked if he CAN'T do physical activity or if he WON'T do physical activity, because those are very different things in the heart world.  My answer was that I think Noah doesn't WANT to do physical activity because he knows he won't feel good if he does.  I think he's a smart little guy who is self-modifying his behavior.  Unfortunately, he's only four.  He can't really verbalize a lot of how he is feeling.  So, we came up with a plan for some testing.  Hopefully, in the next few weeks, Noah will have a stress test (he'll be one of the youngest patients to do it, as normally the age cut-off is six) and a heart cath for them to check the pressures in the four chambers of his heart to see what's really going on in there.  He had a cath back when he was first diagnosed three years ago.  His pressures weren't great then, so I'm anxious to see what they are now. Noah also wore a holter monitor for 24 hours after the appointment.  Noah seemed happier and calmer after the appointment.  I think he felt heard and cared for.  I just hope we can figure out what is going on and come up with a plan of action to make him feel better on a day to day basis.

We woke up this morning and got to take his heart monitor off.  Last year, it was a scream fest trying to take off the electrodes.  This year, he just let me do it without so much as a whimper.  He was so brave!  (I think he liked that he got to help take my monitor off too!)  And then it was off to his first day of preschool!!  He had a great day at school.  He said he really liked Mrs. Kane and had a fun time.  I watched him gas up his tricycle on the playground several times while I was waiting to pick him up :)


On the way home from preschool, Noah asked to stop by the violin shop that is on the corner of our neighborhood.  I figured, well, why not, let's go look around.  We got to go to the warehouse across the street, and the owner brought out the tiniest violin I've ever seen for Noah to try out.  The smile on his face was just precious.  He looked so calm, so happy and so proud of himself.  When I asked him what he thought, he said "I want it."  Before I knew it, we were filling out rental papers and driving home with a tiny violin! (For only $17 a month, I couldn't resist!)  Noah will never be able to play sports, and we've talked about him choosing another instrument for awhile now.  I didn't expect to do it today, but here we are!  In the car on the way home, I asked Noah if he'd been thinking about this for awhile.  He said "Yep!" very confidently.  He keeps so much inside, and I just knew he had been by the way he lit up when he got the violin in his hands.

We had to call Daddy, put him on speaker phone and Noah played the violin and made Daddy guess what it was.  Daddy got it on the first try, even though he was very surprised!  (Thankfully Daddy wasn't upset with Mommy for my impulsive purchase.... :) )  The violin has been a big hit so far.  Noah has learned how to open the case and take it in and out, and has practiced that many times today!  He loves to try and play, and Daddy has already shown him some things and started looking for a violin teacher.


It is hard, as a mom, to walk your child through chronic illness with it's ups and downs, limitations, pain and anxiety.  It is helpful, crazily, that I have the same condition.  I can tell him what helps my heart to feel better.  I can sympathize with not being able to do everything.  He knows that our hearts are the same and I am glad that he has that and that he won't feel alone on this journey.

I am grateful today for compassionate doctors, violins to make my boy smile, impulsive adventures with my boy, medical technology and the amazing environment at 3Cs Nursery School.

Twenty years

Twenty years ago, my life almost ended, and then began anew.  Twenty years ago, I lost my innocence and normalcy.  It has been a long journey, and the journey still continues.  6 surgeries, 5 sets of leads, 4 defibrillators, 3 doctors, 2 diagnoses and 1 sudden cardiac arrest.   

I could rehash the whole story, but you know, I don't think I will.  I don't like being a heart patient, yet I also take great pride in it.  I don't like having a defibrillator, yet I won't live without one.  I sometimes feel scared, vulnerable and unsure when it comes to my heart, yet I also feel strong, confident and able to help others who are newly diagnosed.  

Somedays I feel like a heart patient.  I have palpitations, I won't climb the stairs if I don't absolutely have to, I need to nap partway through the day, my chest hurts, and so on and so forth.  And other days, I feel normal.  I have energy, I dance, I wakeboard, I feel strong and capable.  

Life is funny.  It contradicts itself in so many ways.  August 6th has always been a weird day for my family.  A day of thankfulness, reflection, sadness, and...I don't know what.  This day definitely changed my family, and 20 years ago we wouldn't even have imagined the many ways it WOULD change it.  We couldn't have imagined that my dad would have the same disease and device, but that we wouldn't know that for 18 years.  That my second son would have the disease and my third son would have a variation of it.  That I would even LIVE long enough to have three sons, much less carry them to term and deliver them without much issue.  

My thoughts are scrambled tonight, so I'll let the pictures do the talking.  

Here is one of my EKGs.  Nice deep Q waves, eh? 

And here is my current device.  The Medtronic Evera.  

Post surgery, January 2014  (And Happy World Breastfeeding week!)

Oh, and thank you Dad, once again, for saving my life.  

 

My Grandpa

This post has been percolating in my mind and heart for the past several months.  It's been hard to bring myself to write it, but I feel it's important to set things down and for me to process.  My grandfather passed away a few months ago.   I had the privilege of being with him as he passed.  He had been declining for days, weeks, months, years--however you want to look at it.  It was not a surprise for our family, and the days and weeks leading up to his death were a special time for us.

The last time I saw him when he was awake and conscious was several days beforehand.   He was not feeling well, and my three boys and two foster girls were being loud and overwhelming.  He was sitting slumped in his wheelchair with his head in his hand.  When we were leaving, he looked up and told me, very clearly, "I love you."  He had always been a pretty intentional man, and he made sure to always tell us that he loved us.  The special effort he made that day, stuck with me, and I cried as I walked out, pretty sure that it may have been the last time I would hear those words from him.  It turns out, I was right.  He began to sleep more and more and even though he would occasionally try and tell us, or at least move an eyebrow when we would tell him that we loved him, I never did hear him tell me clearly again.

Hospice came in to help care for my grandpa.  All of the ladies were wonderful and it was such a comfort to have someone skilled, competent and knowledgeable there at every moment.  It was invaluable.  That last week, my family spent a lot of time there with grandpa and with each other.  There were a lot of tears, a lot of laughs and a lot of sweet moments.  I ended up there late one night after getting all my kiddos in bed.  My cousins, David and Michael showed up as well.  We sat around my sleeping grandpa, in his mostly dark bedroom, talking and telling stories.  They asked me to share my memories of my grandma, and more importantly, of my grandma and grandpa together, since they were so young when she passed away.  We talked for a long time, and shared lots of memories.  Grandpa laid there still and quiet, until I told a story about his great love for her.  When my grandma was going through chemo, she would get really cold.  My grandpa found her an electric blanket that plugged into the car lighter.  There was one really hot summer day when he had to drive her to treatment.  She sat in the car with the heat on high, electric blanket on and was still shivering.  My grandpa was sweating buckets.  But they both got the giggles and just laughed at the ridiculousness.  He loved her so much.  At the end of that story, he moaned and tried to open his eyes.  He just loved her, and it touched my heart to see him try to react to the story.  I'll never forget that sweet moment with my cousins.

A day or so later, my parents and Aunt and Uncle got the call in the middle of the night that it was getting close.  They ran down to his bedside.  They called all of us cousins in the morning.  Thankfully, it was a Saturday.  We spent the day taking turns sitting with him, comforting each other, making each other laugh, typical "Steel" things.  My sweet boys came down several times to see their great-grandpa.  They just couldn't stay away.  I am so thankful that they got to know him.  They loved to go visit "Pop" and talk about World War II and B-17s.  He spent the day struggling to breathe.  His breathing was really loud, and then he would have periods of taking long breaks between breaths.  Even though he was mostly unresponsive, he had this one eyebrow that would move when one of us would talk to him or tell him we loved him.  By the end of the day, my parents and Aunt and Uncle were exhausted.  They had been up since the middle of the night.  I couldn't bear to think of my grandpa there all alone with just the hospice nurse.  My wonderful husband was so understanding and took care of all the kids so that I could stay.  My Aunt and Uncle stayed until around 10:00 and then they headed home for some rest as well.

I was nervous to be alone with Grandpa.  I had never seen anyone pass before, and there is something inherently frightening and nerve-wracking about that--not to mention sad.  But I had a very strong gut feeling that I needed to be there.  My brother, who lives in New Hampshire, was there for me the whole night.  He called, texted and face-timed with me whenever I needed him.  My sister-in-law told me I was on holy ground.  She prayed for me and really encouraged me to embrace the time I had.  I am so glad that I did. I sat beside him, in his darkened bedroom and prayed for him, held his hand, and read the gospel of John out loud to him.  It is something I will never forget.

A little after 2am, Grant called and told me that Ryan was awake and needed me.  I reluctantly left my grandpa and drove the few miles home to nurse Ryan back to sleep.  It was a really odd feeling, having a pull towards my baby who needed me to sustain and nourish his life and a pull towards my grandfather whose life was dwindling.  Two people on opposite sides of life, both that I loved dearly.   I was gone for only about 45 minutes all together.  When I got back, I spent some time in his living room having a snack and then I felt I had to rest for just a few minutes.  I had been asleep no longer than 10 minutes when the hospice nurse woke me up and told me it was time.  I ran into his room to hold his hand.  I called my parents to come as the nurse called my uncle.  Then I face-timed my brother.  My brother and I were able to comfort him and talk to him while we waited.  My parents and Aunt and Uncle got there within a few minutes (praise the Lord for zero traffic in the middle of the night!) He passed very peacefully a few short minutes later.

After fighting for breath all day, it was such a relief to see him not struggle anymore, and to know that he had arrived in heaven and was reunited with my grandma.

The week of his funeral brought even more sweet moments, but I don't have it in me at this point to review all of those.  Suffice it to say that my brother, cousins, aunts, uncles, parents and I enjoyed each others' company and renewed our commitment to our family and each other.  We went out to Montgomery Inn for a special dinner out and toasted to Pop with a round of his favorite drink, Manhattans on the rocks.

My grandpa was not a perfect man, but he was a man that loved to laugh, loved his family, and said "I love you."  He left behind a legacy of a family that can laugh through tears, shows up and is present for each other and isn't afraid to say "I love you."

Christmas is coming!

Christmas seemed so far away, and now it is so very close!  I just sent out our Christmas cards, and I always include a link to our blog.  Our card this year includes pictures of our foster daughters, and there just isn't room enough on the card to explain the family situation.  So for all of you  checking in to get the scoop--here it is! :)

We received our official foster care license from the state of Ohio on Ryan's due date last January, the 16th, to be exact.  (He was already 16 days old at that point.)  We received our first foster care placement on June 13th.  Little Miss T is four years old.  She is spunky, energetic and very nurturing to her baby sister.  Little Miss D is the same age as Ryan.  We essentially have twins for this moment in time.  Miss D is the sweetest, happiest baby ever.  She loves to dance and could probably be walking by now if she wasn't so busy dancing and bouncing!  While we would love to adopt these girls, their mom is working hard to get them back.  They will most likely reunify with mom sometime after the new year.

If you're keeping track, that means that right now we have a 5 year old, 4 year old, 3 year old and 2 11 month olds.  Life is BUSY!!

 Alex is five and a half and started kindergarten this year.  He is learning and growing so much.  It is so fun to watch him learn to read.  He surprises me almost everyday with something new that he knows.  I always ask "How do you know that?!" and he replies "I just learned it!"  He loves his role as the biggest brother.  He is very helpful with the babies, especially Ry-guy.  He loves to have some "Ryan time" in his room at bedtime and play and wrestle with him.

Noah is three and a half.  He is growing so fast!  He is much taller than Alex was at this age.  He started preschool this year and is doing great.  He recently learned how to write his name.  For a while, he would write NOH and then ask me to write his A for him.  :)  He is my independent guy.  He will go into new situations, usually, without any hesitation.  He recently went on his first plane ride.  He ran through the airport, onto the plane, sat in his seat while I went on to my seat in a different row, and waited patiently for Ma to join him.  He is so brave.

Ryan will be one on January first!  He is such a happy guy.  We call him Ry-Ry or Ry-guy most of the time.  He is a busy guy and loves to play with all of the kids.  He started walking this month.  He toddles everywhere now.  He also loves to clap and play peek a boo.  While he is definitely a Mama's boy and loves to cuddle with me, he also lights up when his Daddy walks in the room.  One of his favorite things is a squeeze hug between the two of us.   He also has his four front teeth and looks like a little chipmunk.

We have, thankfully, had a very quiet year with our heart issues.  Noah has remained healthy and active despite his hypertrophic cardiomyopathy.  We keep a close eye on him, but he is doing great.  Ryan tested negative and does not have the gene!  We are so blessed.  I came through this third pregnancy without any changes to the structure of my heart and am feeling great.  I am due for a new defibrillator sometime after the first of the year.  I will also have my leads extracted and start fresh with a whole new "system."  The doctor who normally does my lead extractions up at OSU is leaving for NYU, so I am on the search for a new doctor.  (Lead extractions are tricky, and only performed at certain hospitals with experienced doctors.)

We traveled to Minneapolis last week to visit Medtronic.  I was invited to speak at their quarterly Cardiac Rhythm meeting.  I was able to share our family's story and share with them how much their work impacts us.  It was a great trip.  I met the engineers and product designers that have created my last three devices.  Over lunch, they shared lots of information and even showed me the next device I will get and the "guts" of it.  They are simply wonderful, giving, kind people.  My amazing doctors, Dr. Knilans and Dr. Jefferies made the trip as well.  They support me so much and it meant so much to me to see them in audience as I spoke.  There were about 400 employees at the meeting and they live-streamed it to several thousand more around the world.  It was such a great trip.

Life is full, life is crazy, and life is good.  We are blessed every day by God's provision and direction. We pray that you are blessed as well!

What a day

I want to write this post, not to remember how all of this happened, but because so many people were praying for us today, I believe you should know how everything played out.  First of all, THANK YOU for your prayers.  It has been a whirlwind of a day.  I reached out to a few people, and I've had love, prayers, scripture and offers to help flooding in all day.  God has truly surrounded us with such an amazing support system.

Last night, around bedtime, Noah started complaining of chest pain.  We snuggled with him, calmed him down and Grant slept with him all night.  The first words out of his mouth this morning were "My chest hurts."  Never what you want to hear from your child with cardiomyopathy.  He ran around and played this morning, and didn't seem too far off of normal, except for stopping every once in awhile to grab his chest and complain.  He ran up to the bus stop and threw snow balls with Alex the whole way.  But once we were loaded in the car to drive to his preschool he said he wanted to just stay home with me.  This is my social, on the move, loves his preschool and his friends, little boy.  Something was clearly not right.  We turned around to go home, and I called the pediatrician.

Dr. Dine has been treating patients for 30+ years.  I know this because he was one of my doctors for my whole childhood.  He is regarded as a great diagnostician.  He evaluated Noah and determined that his liver was enlarged.  He called down to Children's Cardiology to get their opinion because, apparently, an enlarged liver can point to heart failure.  Cue my anxiety.  Our wonderful cardiologist wanted us to come down at 1:00.  That afforded me just enough time to coordinate all of the bus pick-ups, lunch, etc. and still make it down to Children's.  My husband, immediately left work and came home to go with us (there's nothing quite sweeter than watching your husband love your kids so dearly).  My mom also left work and came to my house to watch the other kiddos.  Off we went.

Upon examination at the hospital, it was determined that his liver was NOT, in fact, enlarged.  The cardiologists believe he has costochondritis, an inflammation where the ribs connect to the sternum.  A few days of ibuprofen and he should be good to go.  It's not dangerous, it just hurts.  His EKG was normal, well, ok, "normal" for him.

So, okay, there are a number of ways in which to interpret all of this.  #1--the pediatrician got it wrong, or jumped the gun.  He mistook something else for an enlarged liver.  Knowing him and his reputation and experience, I don't really buy it. #2, the cardiologists blew us off or missed the enlargement of the liver.  Again, knowing these cardiologists and the fact that they evaluate heart failure patients all day long, I don't buy it.  So what happened in the 2 hours between the 2 appointments to Noah's liver?  My explanation--God healed him.  Is it a cut and dry healing?  No.  Could either of the doctors have been wrong?  Absolutely.  But I choose to believe in the power of prayer and that God was at work today.  So thank you, all, for your prayers.

There were many moments today when my mind would race and I would envision tests and hospital stays and a new "normal" for our life with our little guy's life having a different tone to it.  I envisioned us starting  down the path of "full time heart patient" rather than a kid that just happens to have a heart condition.  But tonight, my sweet Noah ran, jumped, played with his siblings and I got to tuck his sweet sleeping body into his own bed in our house.  What a blessing.