A Thanks Giving Post

Thanksgiving is tomorrow.  Every year, people are brought around a table of food, prepared with love, to remember all the blessings we are given in this life....both spiritual and physical.  There are too many blessings in my life to really name them all.  But there are the obvious ones. 
Mateo's continued health is something our whole family is very grateful for.  I know so many heart families are spending their Thanksgiving either in a hospital room with their little loved one or at the Ronald McDonald house, eating a meal so graciously donated by someone else.  Either way, they are away from family.  From one heart family to all the other heart parents, we know what you're going through and we pray for swift recoveries and that you'll all be home soon.

Our family is always thankful for all the support and love from our brothers and sisters in Christ at our local congregation.  God knew exactly where we needed to be, and when we needed to be there.  We stumbled on our local church one day, shortly after arriving in Florida.  We were out looking for a house on a listing we recieved from our realtor.  We never found that house, but we found the church home where we belonged.  We have had an over-abundance of care, concern, kindness and generosity since we set foot in the church in Brandon.  We know we are loved and while we're away from blood family year after year, we always have a spiritual family that we know we can count on.  They have been with us through every up and down since Mateo was born.  The waiting room was filled with concerned friends, laden with coffee and sweets, at every surgery Mateo had.  We recieved phone calls, cards, emails, facebook messages....all too many to count.  Our brothers and sisters went to God in prayer numerous times on our behalf...holding special prayer services for Mateo and our wonderful "drive-thru" prayer meetings.  We have been lifted up in prayer so many times by those in Christ, and God has heard. 

We've also had an abundance of support from friends in the community.  They also have prayed for us many, many times and are always quick with a text to see how we're doing.  The boys and I have had several invitations to Thanksgiving meals...everyone wanting to make sure we're not alone for the holiday.  Nearly two weeks ago, we participated in the annual Tampa Bay Heart Walk.  This is the 4th year we have participated and I think the event gets bigger every year.  There was an estimated 30,000 at the event this year!  Our little community team is such a big encouragment to me.  There are businesses that have hundreds, or maybe thousands, of participants for their company and raise tens of thousands of dollars.  Our individual team of 20 or so raised over $2500 in support of the American Heart Association.  I'm so proud of our team and feel so blessed to have so many people care about us as much as they do.  Our team doesn't consist of just those who came out to walk, but also includes all those that donated and helped spread the word.  They showed their support for us and an organization that will one day help cure, prevent or permanently repair CHDs.  I feel like my heart fills my chest with gratitude when I think of all our friends that have helped us out year after year.  I love you all so much.

I am thankful for my family in Wisconsin.  They are so far away but so close in heart.  My mom and I could chat on the phone for over an hour almost every day...we never run out of things to talk about.  She's the first one I want to call when ANYthing happens in life, good or bad.  My dad, while not much of a phone talker, is always with me in thought.  I am the way that I am because of much of what he taught me growing up.  Many of my decisions are based on some principle he taught me, which I know are also based in God.  Something I will always be grateful to my parents for is making sure that we were taught the truth.  They have definitely "trained up a child" with me and while I am trying to do the work to know God, they are the ones that set me in that direction.  

I love my sisters...and while they are going through their own trials now, I hope and pray they find their solution in Christ.  They are beautiful girls with so much to offer and during my visit last summer, I enjoyed every moment I got to spend with them.  My brother, who I don't get to talk to nearly enough, is funny and gives the best (and sometimes painful LOL) bear hugs.  He works hard for his family and also is trying to bring up his boys to know the LORD.

I have gotten to know my sister-in-law much better over the years that her and my brother have been married and I'm thankful for our relationship.  I hope that we can be closer as the years go on.  She has been a help to me by giving me great advice when I wanted it and encouragment when I desperately needed it.  She has inspired me by her diligence to grow in grace and knowledge of the Lord and has been a good example of what a Christian wife, mother and friend should look like.  One of the smartest things my brother has ever done was marry that girl!  I am really looking forward to being with them all for the upcoming holiday season.  I'm hopeful that when our family moves closer next year, we'll be able to see one another much more often and develop deeper relationships.

 I am also thankful for our most recent addition to our family...a healthy little boy we named Mason.  He is a red-headed spit-fire.  He is determined and stubborn.  He is also sweet and cuddly.  He is in to everything and can't wait to be just like his big brother.

He has such a personality.  He laughs at everything Mateo does and follows him around like a lost little puppy.  He mimics everything Mateo does too.  They have screaming matches on a daily basis...mostly just because screaming is fun.  They laugh together and play together.  So I'm also thankful for their relationship.  Mateo is SO GOOD with Mason.  There are not enough words to describe how good he is with Mason.  For a 4 year old, he is so patient and gentle, it amazes me every day.  I never knew a 4 year old and a "less than 1" year old could play so well together. And Mason ADORES Mateo.  The adoration in his eyes when he looks at Mateo is evident.  He watches him constantly and has to be near him all the time.  Its so sweet and melts my heart.

I also thank God for my husband.  Our marriage and relationship has been put through the ringer several times and we always come out of it stronger and healthier than when the trial started.  We love each other, we respect each other, and we support each other.  Mel balances out our relationship so well.  When I tend to be over-cautious, frenzied and impatient, he is thoughtful, calm and VERY patient.  We are a team and Mel has been there to keep our family afloat during some seriously scary times.  He is our rock and God has blessed me with one of the best out there.  I am blessed to be with a man that wants to know God more closely and wants to lead our family in that direction as well.  He is an amazing father who has an amazing love for his children.  
I know this list could go on and on but I'm going to end it here.  We have been given a wonderful life.  We've had our moments of trial, but even that is a blessing in disguise.  Through our trials we are able to really appreciate the good times.  Through our trials, we can bless others and comfort those who are going through something we've been through ourselves.  God tells us in James that our trials are to strengthen our faith.  Give us more endurance.  Make us complete and mature in Him.  He also tells us in 2 Corinthians that he comforts us in our trials so that we may know how to comfort others when they are enduring what we've already endured.  What a blessing.  Happy Thanksgiving!

Joy Comes With The Morning

"I hate heart disease.  I hate CHDs.  I hate HLHS.  Hate.  Hate.  Hate."  That's what was swimming around in my head this evening on the way home from dinner.  We had been having a great time together as a family, and the smallest of things completely stole my joy and left me with a bitter, twisted disgust in the pit of my stomach.  Mel has been home for a few weeks now from Korea.  We've been enjoying every second together, being able to be a whole and complete family again.  We had a fantastic dinner out with the kids and were headed home.  We had the radio on and Mateo's favorite song came on and he asked me to turn it up.  So I did and we all started singing along.  I LOVE listening to Mateo sing.  He has the sweetest little voice and he gets all the words wrong and it makes my heart smile so big, it shines.  And in the middle of that moment...feeling all shiny and happy.....I looked at Mateo's happy, sweet face and felt a stab to my heart.  Fear suddenly trickled out of my veins and into every cell of my body.  Sadness rushed in and I silently pleaded with God to let Mateo have several thousand more nights like tonight.  To just be happy.  To just sing and be happy.  To be innocent.  To be in the car with his family, singing and feeling safe and secure.  To not know another hospital bed anytime too soon.  And just as swiftly as the fear had come in, it was replaced with anger and hate.  And all I could think was "I HATE HLHS".  That it could so quickly come out of nowhere and rob me of that sweet innocent moment, watching my son just enjoy life, and leave me feeling sick to my stomach.  But its the reality of our situation.  We enjoy every second we have with our kids because we don't know if it will be our last.  If tomorrow is the day the other shoe drops.  We try not to live in fear.  We try to just enjoy the moment.  But it does catch up with us every now and then....at the most inconvenient of times. 

I have blogged about this many times before....only because it is so very real.  It is scary.  To know that Mateo is growing up.  That he won't be my little boy forever.  That the bigger he grows, the harder it is on his heart.  And all we can do is hope and pray that his heart is strong, stays strong and holds out until......until what?  We really don't know.  Until they find a cure?  Until they find a permanent fix?  I don't know.  Just.....until.  It is hard not to fear the unknown.  Its a big, bottomless pit.  As heart parents, we just want to know that our children will be alright.  That even if the Lord does call them home too soon, that it will be swift, painless and not mean days, weeks, or months of fighting for each breath, suffering and enduring pain in a sterile white hospital room.  Its hard knowing that your child is NOT alright.  Yes, Mateo is fine and healthy and doing so wonderfully well right now.  But that is right now.  After all he's been through, he still only has half of his heart.  And its doing all the work of a whole heart.  Its bound to wear out at some point.  But when?  Next week?  Next year?  In 5 years?  10 years?  20 years?  Will there be a fix for it?  Will he live a normal adult life?  Will he even reach adulthood?  How many hiccups will there be along the way?  We KNOW there will be something to fix eventually...whether its a valve that needs replacing or a pace maker placement or an artery that needs widening.....or a million other things.  What we don't know, is if its going to be a major issue or just a bump in the road.  And so, again, I HATE HLHS. 

But then....we can always find a light in the dark if we look for it.  I so often have to turn to God's word when I feel like this.  I cannot crawl out of this pit on my own.  It threatens to swallow me whole and God's promises are the only thing I can cling to, even if I'm barely holding on...clinging to them by the tips of my fingernails. 

Tonight, I felt despair as we pulled into the driveway.  Of course, I was still smiling big and singing along with Mateo, but my inner joy was replaced by hate and despair.  And so after everyone is in bed, I turn my bible to Psalms.  There is so much hope in those pages.  Thank you LORD for including them.  I think a lot of people would be lost in their despair if Psalms hadn't existed.  How can these words NOT uplift me? 



"When I am afraid, I put my trust in you.  In God, whose word I praise, in God I trust; I shall not be afraid..." 

"Be merciful to me, O God, be merciful to me, for in you my soul takes refuge; in the shadow of your wings I will take refuge, till the storms of destruction pass by.  I cry out to God Most High, to God who fulfills his purpose for me." 

"Your steadfast love, O LORD, extends to the heavens, your faithfulness to the clouds." 

"Let all the earth fear the LORD; let all the inhabitants of the world stand in awe of him!  For he spoke, and it came to be; he commanded, and it stood firm." 

"From where he sits enthroned he looks out on all the inhabitants of the earth, he who fashions the hearts of them all and observes all their deeds.....Behold, the eye of the LORD is on those who fear him, on those who hope in his steadfast love, that he may deliver their soul from death and keep them alive in famine.  Our soul waits for the LORD; he is our help and our shield.  For our heart is glad in him because we trust in his holy name." 

"Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!" 

"Weeping may tarry for the night, but joy comes with the morning."

These words mean so much for me.  God sees us.  He sees me.  He sees Mateo.  He sees my fears, my hopes, my despair.  He loves me and He loves Mateo.  He knows what we feel.  He created me and knows me inside and out.  And he has given us hope.  Joy comes with the morning.  He is in control. 

And so the fear melts away and I can begin to breathe again.  What a feeling it is to release all those negative feelings.  Let the Lord take them away.  Cast your cares on him.  To unburden yourself and give the control over to God is a life saver.  I know this is momentary.  It will last only awhile....until something else happens to steal my joy by reminding me that I'm not in control of Mateo's future and that I don't know how it will turn out.  But that's the wonderful thing about freedom of religion.  I have a bible in every room of my house and can even read it on my Kindle in the dark, while nursing Mason back to sleep for the zillionth time at night.  Its always there for me to turn to in those moments of despair.  So tomorrow, I will get to enjoy my Tuesday with Mateo.  I get to find joy in the little things again.  I love taking him to school.  I love watching him with his friends.  I love how his 4 year old mind thinks.  The things he says and the things he does have me grinning or chuckling almost all day long.  So my advice to you tonight......find your bible.  Dust it off if its been awhile.  Open it to Psalms....or any passage you enjoy reading.  Meditate on it tonight.  And in the morning, find your joy.

A rough update on the last 6 months

Wow...time does fly!  Apparently its been 6 months since I last updated this blog.....doesn't seem possible to me, but the dates don't lie.  Life happens and things like this blog end up taking a back seat.  Honestly, I was only using this blog to keep people updated on Mateo's heart condition and information but I have a feeling this is going to turn into a "What's Happening with the Whole Douglas Family" blog.  We've reached a steady momentum in Mateo's heart condition and there's really not much new to post.  He had a follow up appointment with Dr. Suh, his cardiologist, last June.  Weight, height, blood pressure, pulse ox, EKG, ECHO.....it all went as routine as possible and Mateo got an "A-OK" from the doctor.  Heart function is super and no other issues have reared their ugly heads....so we go back in 6 months for a routine check up.



Can't you tell how happy he is about that?!


Mateo turned 4 years old at the end of April.  I didn't want to do a big party at our house by myself so we had his party at the zoo in Tampa.  He loved it.  The zoo did an excellent job too.  They provided a party room for us and after a little over an hour, they let everyone out into the zoo for the day.  We had an EXCELLENT cake.  It was made my Caridad Santana and I would recommend her any time.  We were approved by Icing Smiles Org. to receive a special cake, free of charge, for his birthday.  Icing Smiles is an organization that finds local bakers (either professional or in-home) that will donate their time and supplies to creating a beautiful cake for a child with a serious illness.  It is such a neat program and we were so honored that they accepted our request.  The cake turned out delicious and looked amazing!




Mateo and his birthday cake

Mateo also participated in tri-sports at the Y this spring.  He had 9 weeks (3 weeks of each) of soccer, basketball and t-ball.  He had a lot of fun.  His favorite was t-ball and he is very good at it.  I think he'll end up being a baseball superstar like his dad was in high school!

Mateo also saw his eye doctor in June and we were sent home with great news!  Mateo no longer needs to wear glasses.  His focusing issue has been resolved and while his vision isn't perfect (which it probably never will be) its not bad enough where he needs to wear glasses or patch anymore.

Mateo, Mason and myself spent 5 wonderful weeks in Wisconsin with my parents over the summer.  It was SO good to be home for that long.  My only complaint is that it wasn't long enough!  I could have stayed through the rest of the year.  It was nice having the extra help with the boys.  Mason started eating baby food while we were there.  Mateo got to play outside with reckless abandon, like boys are supposed to be able to do. 

He had sleepovers with friends, playdates with cousins, several "gator-rides" with my mom, we went to Bay Beach, bowling...etc.  No wonder he didn't want to come home!




This is farm life!





The giant slide at Bay Beach...Mateo LOVED it!





Mateo finally got to ride a Ferris wheel...his face says it all

Meeting Smokey The Bear at the Scandinavia Corn Roast Parade



He had a great time with his cousin and my parents.  He hated to leave.  We've been home for 3 weeks now and he STILL asks if we can go back to stay.  

We got home just in time for school to start. 

Mateo is attending the same school as last year.  With so many "unconstants" in his life right now, I didn't want to go and change his school on him too....not that I had wanted to.  We love his school and all the teachers there.  They do a great job and Mateo loves it there.  Plus, a lot of the kids that were in his class last year are in his class again this year.  So I didn't want to take that familiarity away from him.  He is loving school.  I want to be as involved as I can be this year, but we'll see how it works out with Mason and his schedule.  Life always revolves around the baby!

One other piece of exciting news is that Mateo was chosen to have his picture and story put on a poster that would be displayed in select Subway restaurants and Regions banks.  They will be promoting the Heart Walk put on in Tampa by the American Heart Association.  We are really excited about it, so if you see his poster out and about in Tampa, Brandon or Plant City let them know you know Mateo and feel free to purchase a heart in honor of Mateo!




A rough picture of the poster!

 On another note, Mason is growing like a weed.  He turned 8 months just a few days ago.  Its going so fast.  Less than 4 months and he'll be a year old!  Last April he was diagnosed with torticollis.  His head tilted to the right because of a weak/short neck muscle.




Notice the head tilt!

 He started physical therapy right away to work on stretching that neck muscle and building some strength to help straighten it out.  He did PT twice a week and I also had him see a chiropractor twice a week.  When we went to WI, I couldn't continue the physical therapy but he was able to continue seeing a chiropractor and she also practiced cranial sacral therapy.  Basically, she would put pressure on certain parts of his head to reshape it.  Due to Mason's torticollis, his head was a little....asymmetrical....and needed a little TLC.  She did a great job and Mason looks great! You can't really even tell there had ever been an issue.




Pretty little head  :)

Mason is into everything right now.  He is ALMOST crawling.  He can roll himself to get where he wants to go and he does some kind of scoot/shuffle that I don't even know how to describe.  But he has begun to get on his hands and knees and rock.  He doesn't quite have it yet, but I think in a week's time, he'll have the crawling thing down.

Mason is also starting to experiment more with foods.  He LOVES his avocado and he likes anything I put in his netted teether.  But he prefers any of the orange veggies...even over fruit.



Look at them baby blues!

 So the boys are doing well.  I have been going a little crazy.  The whole "single parenting" thing has proven to be very difficult and overwhelming.  But we're making it through.  I signed up for a 3 month gym membership and I can't believe how great it feels to run on that treadmill.  I hate exercising. Seriously.  But with all the stress and melt-downs I have lately, that outlet is just amazing.  I could run and run and run....unfortunately, Kidersize at the gym has closing hours, so I have to turn off the treadmill at some point :)  I am craving something that is all mine lately, so I did something I never thought I would do.  I signed up to do a run.  I must be C-R-A-Z-Y.  I hate to run and I never thought I should have to PAY someone to do it (except the gym of course).  But my good friend talked me into it since the money spent goes to a really good cause.  So I am running my first 5K ever in the Blueberry Stomp Mud Run.  Its 3 miles of muddy goodness.  3 miles, 19 obstacles and I can hardly wait.  Its going to be a blast. 

The same week I signed up to do the mud run, I also registered to do The Color Run in St Pete.  Seriously, I don't know what I'm thinking.  But I'm getting this high off of running right now, so I thought....why not?  It looks like fun.  Its not timed.  I'm not trying to prove anything.  I just want to run and have fun (seriously, I just used those two words in the same sentence...who am I??) and have it be MY thing.  Mama needs some time to herself!

So we are living life to the fullest right now and having a good time doing it.  Life sure hasn't been boring lately and it doesn't look like its going to slow down any time soon.   But that's the way us "Douglases" like it!



Someday I hope to be Fearless

I have to say, I am really bad at keeping this blog updated.  Of course, I'm the type of person that likes to block out anything bothering me and pretend I live in a perfect little world.  Then it builds up to where I HAVE to write it all out and I guess that's where this blog comes in. 

Things are actually going very well right now.  The most recent thing/event I had been "blocking out" (ie: ignoring, pretending wasn't really happening) was that ever since Mateo's surgery, last September, he had been going into junctional rhythm.  This means his heart wasn't beating in rhythm together and that his beats per minute were going dangerously low.  Its something his cardiologist wanted to keep an eye on.  Mateo had a 24 hour holter monitor sometime last November and his beats/minute were in the high 50s.  His cardiologist said that that was "doable" but if it went into the 40s while sleeping, we would need to intervene....as in, talk about placing a pacemaker.  While this is not the worst thing in the world, it would have devastated me.  In my mind, having to intervene with ANYthing including a pacemaker, is the beginning of the end.  I was told that after the 3rd surgery, we would be on "the good side" and be able to just enjoy life.  That is not my experience.  At least after the 2nd surgery I knew what to expect and what was next.  We were waiting for him to get big enough for the 3rd surgery to be performed.  That's what was next.  Now, I feel like we've been tossed out to sea and we're just waiting for the other shoe to drop.   I am not naive enough to think that now that Mateo has had that "final" planned surgery that we're whole and fixed and will never have another issue.  I KNOW there will be issues ahead that will need to be addressed.  What is scary to me is that we don't know WHAT issue it will be.....serious or easily taken care of.  We don't know what course will need to be taken to correct that issue....be it surgery or something less invasive.  So, instead of enjoying life without a care, I sit, anxious and holding my breath...always waiting for that other shoe to drop.  So the junctional rhythm issue was a big deal to me.  And putting in a pacemaker meant his heart needed help...which I am afraid will only need more help in the future and resulting in a transplant eventually.  Of course, it may never come to that...but its where my mind goes and I fear.  It may be God's plan...and I'll have to be okay with that...but that doesn't mean I don't fear.  Because if more pain and torture for Mateo is God's plan, I can make peace with that but it doesn't take away the fear of having to see my child in that state.

But back to the present......see, this is what happens when my mind wanders to "that place".  Its hard to get out and I come across all the 'what ifs'...so, back to the present......

Mateo's cardiologist wanted to monitor the junctional rhythm.  It wasn't anything that had to be taken care of NOW....but would eventually need to be addressed if it didn't fix itself.  She had a few ideas to see what was going on.  Sometimes, after major surgery like Mateo just had, the heart needs a little time to adjust to its new anatomy and will take awhile to get back to "normal".  Or, one of his meds might need to be adjusted or quit altogether.  We took our time with figuring it all out.  She gave Mateo's heart a couple more months to adjust itself and she did some blood work in the meantime and also adjusted a medication.  Mateo had another 24 hour holtor monitor (records heart rhythms for 24 hours) last February. 

Well, last week, at Mateo's heart appointment, we got great news.  He is no longer going into junctional rhythm.  Praise God!  Apparently, his little heart just needed some time to figure itself out and its now back to normal.....at least whatever is normal for Mateo.  I was so happy, I cried.  I asked her to recheck everything too because I just could not believe it.  I had spent the last 5 months letting that fear eat up my energy by ignoring that fear in the back of my mind and now its gone.  I felt so renewed!  And on top of that, Mason also had an ECHO and EKG done and his little heart is perfectly normal and healthy.  I have to say, fear had my own heart in its clutches until I heard those words...."perfectly normal".  Seeing Mason with the EKG octopus all over his little chest was hard to watch.  I just did not want to go through all this with another child.  Mateo is worth it all and Mason would have been also, but its so very hard on a mother's heart and mind.  So it was the BEST. NEWS. EVER!

In other news, Mateo still loves school.  They have school/class pictures coming up.  The spring pageant is also in the near future.  I'm still enjoying being a mom of a school kid.  I love to take advantage of every opportunity to help out. 

Mateo also is enjoying being the Big Brother.  He loves and hugs on Mason all the time.  Mason cries and Mateo thinks he has to be there to hold his hand or rub his head, saying all the time, "Don't worry Mason.  Mateo's here.  Big Brother is here.  Don't cry.".  It really is the sweetest thing.  And he is a big help to me, running around bringing me diapers, wipes and burp cloths.

Mason is just over 2 months and is finally growing out of that "cry-all-the-time" stage.  He's beginning to be a lot of fun with all the smiles, coos and arm flailing he does.

We are looking forward to a fun summer with summer camps, Vacation Bible School, gymnastics, swimming and whatever else we can fit into our schedule.  We're even hoping to visit Meemaw and Papa in Wisconsin this summer. 

Mateo's doctor gave us a 4 month vacation from appointments, so we're praying that all stays well.  We look forward to making the best of our last year in Florida!