One year - reflections

One year ago today, after spending the better part of the day waiting...and waiting...and waiting...I got to hold my baby's hand in his little corner of the Pediatric Cardiac Intensive Care Unit; he had a new battle wound and was on life support, and I sang to him, not knowing if he could hear me...

You are my sunshine

My only sunshine

You make me happy when skies are gray

You'll never know, dear

How much I love you

Please don't take my sunshine away

The last line was a prayer.  This was my new reality for the next couple of days, a reality no mother would ever wish to face.

My prayer was answered.

Eight days after my child had open heart surgery, he got to come home.  The days, weeks, and months passed as he continued to improve and get stronger.  Today, Davis is doing absolutely phenomenal!  We haven't had our one-year heart check-up yet, but I have no doubt we will get a good report.

One year later, you can just barely see his scar.

 

I recently read back over my blog posts during our days in the hospital, and I have to admit that re-living the situation through my writings and the pictures is almost unbearable for me.  I was SO strong, as was my husband, our support network of friends and family, and most of all little Davis.  I welcome you to read over the posts as well - at the time, it was a way to keep everyone at home updated; but the details are still there to possibly help others who may have to endure a similar situation.

Happiness is our current reality.  I have never been happier, and anyone who knows Davis knows he is full of joy.  He is the light of my life.

I love you Davis and am so proud of you!!!  Thank you for entering our world and for being exactly who you are.

Rainbows and Butterflies

Hey everybody - it's been awhile.  Here is a quick update on Davis, then I'll get to what's really been on my mind lately!

Since my last post, Davis turned 1 - now he is 15 months old...SO hard to believe!  He has had several illnesses this Spring including croup, colds, and a stomach bug - mainly due to him getting out, staying active, and socializing with other kids.  We found out he has a slightly underactive thyroid, but it does not require medication at this time.  All other medical reports including cardiovascular have been as good as we can expect!  Along with his early intervention, physical therapy, and feeding therapy, he attends play gym, music, church nursery, yoga childcare, Wee Buddies support group outings, and play dates.  We took our annual vacation to the beach and plan to visit his aunt, uncle, and cousin in Florida during the summer as well.  We plan on swim lessons next month, and in the Fall he will attend a Parents' Day Out program at a local church.  Now that's a busy 1-year old!

The biggest news is that Davis is going to be a big brother!  AND, it's a boy!  We haven't named him yet - he is due in October, which means they'll be about 19-20 months apart.  The pregnancy is progressing as smooth as pie.  And in case you are wondering, we did not do the recommended extra prenatal testing - we saw no reason to step foot in the high risk facility unless something specifically about this pregnancy triggered a need to do so, and we accept this little boy as he is just as we have Davis.  They'll keep this mama busy, but I know they will be lifelong buddies.  I never dreamed I would be in a house full of boys, but I am very much looking forward to it. :) Even our cats are boys except for my old lady cat who may not be around much longer.

I'm happy to finally provide an update on Davis - I continue to get several hits per day on the blog, and it bothers me that I don't take the time to do it anymore; but I simply do not like to sit at the computer, especially being pregnant because when I do get down-time, I like to sleep!  However, what has really brought me back to the blog today are the thoughts that have been swirling through my mind lately.

I have had a long time now (19 months to be exact) to reflect on Davis's diagnosis of Down Syndrome, as well as my reaction to it as his mother.  I find myself comparing my thoughts, feelings, and actions to those of other mothers of children with special needs, and I compare our situation to the situations of other families with special circumstances.  I also find myself thinking about people who maybe haven't found themselves in extraordinary circumstances, but endure their own personal struggles; and I think about how I don't find my situation to be anymore unbearable than theirs.

As anyone who knows me or who follows this blog knows, coping with Davis's diagnosis has not been very difficult for me.  I'm sure there are some who think that perhaps I put up a front, that maybe I don't truly feel as positively as I say I do.  Sure, I've had some tough moments; but the truth is, I don't feel burdened by Davis, I don't find myself unlucky to be in this situation, I don't (well, rarely) have negative thoughts about his present or future...I take it day by day, look at the big picture, and count my blessings.  Am I perfect?  Heck no, but typically my stresses are dirty floors, busy schedules, to-do lists, hormones, finding the right outfit, etc... (which all get to me way more than they should); they are not "what are people thinking of my child?" or "what will he be doing 20 years from now?" or "when is my child ever going to learn to walk?".  Do these thoughts cross my mind?  Yep - in one second, out the next.

So what do I dwell on?  My son's sweet smile and laugh, his unbearably cute hands and feet, the way he says "mama," how to best make him happy and feel secure, the opportunity to be a mother, to feel this baby move inside me, my marriage, my absolutely wonderful family and friends, how peaceful our backyard is, taking advantage of beautiful days, keeping myself and my family healthy, how wonderful it is to be alive, and how much I truly love my life.  The list goes on.

I have moments and days in which my thoughts aren't all rainbows and butterflies (just ask Matt or a member of my family); but for the most part, this is really how I think.  It wasn't always that way.  I have only been able to feel this way as I began to live life more spiritually...which just happened to coincide with the gift of my beautiful son.

The world is populated with a bajillion people.  Some children are born into harsh environments, unloving families, or poverty; some have serious birth defects, only live for an hour, or lose their mothers.  Some people don't have the freedom to believe what they want, eat what they want, wear what they want, marry whom they want...  In our culture we are conditioned to believe that we must have this perfect life, in this perfect house, with this perfect family, in this perfect body... It is extremely difficult for many of us to accept flaws in ourselves or in others and appreciate diversity.  We are so quick to judge ourselves and others when an imperfection arises.  Most of us are just freakin' spoiled!

I think when we see the bigger picture, our perspectives change and we realize that things are just not that bad.

I just see no reason to go through life with a chip on my shoulder or a "woe is me" attitude.  I see no reason to get angry when someone makes a comment about my son that maybe isn't politically correct, but no harm is meant.  I see no reason to feel badly that my son isn't walking or talking or whatever it is that other kids his age do; he is his own person with his own unique set of gifts just like every other child with or without special needs.  I see no reason to worry about his future when we are still living today, the one day I know we have. 

We are all unique.  We each have our own challenges - every single one of us!

I know Davis will have to endure many struggles throughout his life directly related to his Down Syndrome.  Those struggles are different from the ones his brother will face, or his cousins, or his classmates.  People may stare, criticize, laugh, joke, or cause harm...but I will always be proud.  My wish is that Davis will always be proud.  And I know that with each person who offers an offensive remark or action, there are a hundred others who have been positively impacted by his existence.
 
My point in all this is to hopefully make a positive influence to someone who may be enduring a struggle.  I hope that by living in a way that is consistent with the thoughts I have laid out above that I can have an impact and leave someone or something in the world better because of it.  I hope if you are still reading my ramblings that perhaps you understand my perspective a little better; and whatever your struggle is in life, I hope you are able to appreciate the "rainbows and butterflies" as often as you can...because they are always there!

 

This Month

Davis is almost 1 year old!!!  I cannot believe it!  This month is busy for us.  Next week, Daddy is off work and we are looking forward to spending lots of family time together.  Also, Davis will celebrate his first Valentine's Day - he will be attending a Valentine's Day party with his friends in our Wee Buddies support group for families in the Chattanooga area with young children who have Down Syndrome.  We had fun making Valentines today; well, let me just say Mom had fun.  Davis was not sure what to think about his art project!

Of course, the biggest event is Davis's music-themed birthday party.  I promised myself I would not go overboard with unnecessary details and spending excessive amounts of money....but I just can't help myself!  Well, I'm okay on the money because I am trying to make as much as I can by hand.  The day is going to be a fun and memorable celebration of this precious life and all his extreme accomplishments over the last year!

Here are some recent pics - enjoy!

Handsome boy!

Let's try eating shirtless - messy eater!  (His scar has healed nicely.)

Cousin time!  Davis loves Wyatt, Grant, and Haley.

Snow day!

11 months - could he be any cuter?

My new year's resolution was "Video a day," which I've managed to do pretty well.  I'm working on a YouTube channel; but as you know, I'm slow at these things. ;)  Channel of Davis coming soon!

Four Months Later...

Okay, I know, I haven't been updating those of you that follow the blog and not my facebook page.  I sincerely apologize!  I've had several requests to keep the blog updated, but I just find it so much easier to provide updates on facebook.  It's not that I don't want to keep blogging - I do; but as Davis has gotten older, I find I do a lot of entertaining and not as much sitting.  Hopefully, one of these days I'll make this more of a priority - until then, send me a friend request on facebook to keep up-to-date, or feel free to personally stay in touch by email at kari.reeves@ymail.com.

The reason I chose to post tonight is because Davis had a cardiology appointment today.  Two months have passed since his last visit; therefore, I was anxious to get the expert opinion about the healing of his heart.  Here is a summary for all of you that care so much and say lots of prayers for Davis (which I truly appreciate from the bottom of my heart!):

• Valves are still leaky but much, much better
• Heart is smaller and liver is to normal size
• We can begin to wean him from his last medicine (yea!)
• Expectation is things will get even better or at least stay the same
• Follow up in two months
• He has gained weight quickly (18 pounds 11 ounces!)
• The likelihood of complications at this point is low; however, because the valves aren't perfect, Davis may experience complications requiring medication or even surgery later in life.  In the meantime, he should be able to run and play and do whatever his "heart" desires!

 I'll call that a success!

In other news, Davis had a marvelous Christmas; seeing him open presents was just so special for me and Matt.  We are planning his first birthday party, which will be music-themed because of his love for music.  Davis attends music classes once a week; he also has physical therapy and early intervention once a week, as well as feeding therapy once a month.  He is making great strides and working hard.  He recently started sitting unsupported and scooting backward - such a joy to witness!

We continue to remember how blessed we are to have such wonderful people supporting the well being of our family.  Of course, the greatest blessing is our happy and healthy boy!

I Am Thankful

November is such a significant month for me.  Thanksgiving is my favorite holiday.  I just love how laid back it feels and enjoy being able to spend time with family, just being together and reflecting on our many blessings.  Plus it kicks off the Holiday season!  This year, my baby will be 9 months old on Thanksgiving, and I have been looking forward to this time of year SOOOOOOOOOOOOOOOOOOOOOOOOO much.  There is just something about your first holiday season with your first child in the world.

Although I have an incredible amount of blessings for which to be thankful on this Thanksgiving day, it is not the only reason that November is a significant month for me.  It was about this time last year that I learned that Davis would require heart surgery as an infant and that he had Down Syndrome.  I invite you to read our story here and vote for it if you feel led to do so.  The two stories with the most votes at the end of the month will be published in the National Down Syndrome Society monthly newsletter - that would be AWESOME, because then even more people will read our story and learn about incredible Davis!

I am looking forward to taking Davis's picture tomorrow in his mini-recliner with his buddy bear.  Here are his photos from the last three months:

6 months

7 months

8 months

Sheesh, just too much cuteness.

Also, I just want to mention that Davis's little friend Coleson will have the same heart surgery that Davis had on November 28th, so please keep Coleson in your thoughts and prayers.

Have a very happy Thanksgiving!!!! 

Here is the link again for our story:
http://www.ndss.org/My-Great-Story/Virtual-Storybook/Family/One-Year/

Guest Post

I know, I know...I have not been keeping Davis's Fan Club up-to-date with his latest happenings.  I do apologize, as I had promised to do better.  I have let life get in the way, I guess.  Plus, I have plans for this blog to tweak it so that it is more aesthetically pleasing and includes more day-to-day life post topics versus just Davis updates...so I feel that I have kind of hit a road block in my creativity as I contemplate my purpose for this outlet.

So because of that, I am going to let Davis's Gramma do a guest post that she has written.  However, I do need to tell you that Davis is doing EXTREMELY well.  His cardiologist visit on Tuesday went better than I expected, and we continue to see him make great strides in his recovery and development.  I have lots of pictures and updates to share about Davis (including his first word - "mama"!), and I will work on getting it all together for you.  I can't deprive those of you that just LOVE you some Davis!

But for now, let's hear from Gramma:

I am honored to write a guest post for my daughter’s blog “Happy Heart of Davis.”

One of my goals had been to start my own blog.  I was going to call it “Joy and Lessons Learned.”

You see, starting about four years ago, I went through some struggles and major life changes.  Both of my parents became seriously ill at the same time.  Then we lost them within eight and a half months of each other.  The next year I retired from my job as an assistant principal after having been an educator for thirty years.  These things along with some family health problems and some internal issues and adjustments caused me to become stronger in my spiritual life and led to much joy and a feeling of many lessons learned. 

I think about my blessings and perspective a lot, and I want to write and share, but I can’t seem to get it done.  They say that you are busier than ever when you retire.  And in my defense, I have an adjunct position at our local university and have been very involved with my four grandchildren.

These four grandchildren are wonderful and uniquely different and precious.  Some would think that the news that one of them was going to be born with Down syndrome and a heart defect would be a cause for sadness.   As it turns out, it has been one of the greatest joys of my life.

It was a shock to hear the news at first, but that did not last long at all.  Luckily in my career as an assistant principal, the Lord had seen fit to provide me with much experience in the field of special education.  I learned so much from chairing and taking part in Individual Education Plan meetings.  I had taught music, fourth grade, and gifted children, but as an AP learned about all kinds of therapies, disabilities, and techniques for greatest progress.  I was responsible for the intake of all of the special needs children in the entire city who were turning three years old.  That meant that I had to work closely with TEIS (Tennessee Early Intervention Services.)  It was quite a task.  Later the school system put school psychologists in charge of the intake.  But not before the Lord put me through my training session. (Romans 8:28)  I can see now His divine plan. 

Davis Matthew Reeves has brought me so much joy.  Even before he was born I was inspired by the incredible attitude and strength of my daughter as she prepared to have a special needs baby with a heart defect.  Her husband, Matt, also showed great depth of character.  And my heart has been warmed by the continuous love and support shown to Kari from her sister, Kelli, who although younger, had three children first.

Then came tremendous encouragement from the rest of the family and a multitude of exceptional friends.

But the biggest inspiration is Davis himself.  What a jolly soul he has!  He and I have an incredible connection.  We even have our own song “You’ll be in my Heart” by Phil Collins, which I heard in the background once on a video about Down syndrome.  Davis may not know yet that this is our song exactly, but I know he approves because he enjoys my singing.

Davis will always be unique and different from what some call the norm in society.  He will face challenges, but he has already conquered heart surgery as a sixth month old.  Not too many people can say that!  He will have his weaknesses and strengths just like everyone else. 

And, there is one thing he can always count on.  His Gramma will always be there for him, through thick and thin.

Cardio Update

 
Over the last few days and weeks, Davis has come SOOOOO far!  Surgery day was over a month ago now, and we have been home for three and half weeks.  He truly is almost back to normal, it's CRAZY!!!

His sleep schedule is right where it should be (back to sleeping through the night around 11 hours - yay!) and his appetite is AWESOME!  His contentment is back, and so is my happy boy!  I'd have to say his biggest complaint now is his teething - typical baby stuff. :)  He still isn't very active, but he has rolled over onto his tummy on his own twice.  It won't be long until he's back to rolling all over the place.  We still won't be able to lift him under his arms for awhile, but we can begin working on head support and trunk control again.  He may have a physical therapy evaluation in a few weeks through TEIS since the surgery has set him back some regarding his physical development.

Today we had a cardiologist appointment.  The echocardiogram showed his heart to be smaller, which is great!  Pre-surgery, his heart was enlarged (and still is) due to having to work harder, and seeing this decrease in size is just what we want.  He still has some fluid in his lungs, and his breathing is still a little rapid.  Davis will have an ultrasound on his neck next week to check the blood clot - hopefully it is gone and we can stop the blood-thinning injections.

But I think what I am most proud of is he has finally reached the 15 pound mark - 15 pounds 1 ounce today!!!!  He's been in the high 14's for weeks on end, so I was happy for him to reach this milestone.  Also, you can see from the pictures below he has healed quite nicely.

Silly guy!  He loves bath time!

The good report means that we can actually show our faces in public again!  It'll be nice to get out and about with little man.  Our first big outing will be the Buddy Walk on Saturday; we are excited to show our support for Davis and others with Down Syndrome (click here to read about the Buddy Walk).  Our only issue with getting out is the flu is already spreading, and Davis really needs a flu shot to protect him from getting very ill at this point; but he can't receive the shot until he gets off the injections.  I am not a huge fan of the flu shot myself, but I guess I'll be getting my dose this week to help protect him.

It's mind-boggling to look at these pictures and then go back through the pictures on the blog over the last month and see how far he has come.  Davis is an absolutely incredible creature!  And look at those roly-poly arms and happy face - too much cuteness for this mama to handle!