Three years ago my life and my FAITH changed dramatically. A few weeks before her arrival, my niece was diagnosed with Hypoplastic Left Heart Syndrome. I must admit that until this point I was blissfully unaware of how many babies are born with a congenital heart defect (CHD) and how miraculous it truly is to bring home a healthy baby. My FAITH was seriously rocked when my niece went home to heaven after six short weeks here on earth. Why did God send her to us if He was only going to take her away a short time later?
During Lila Rae's time in the hospital my sister in law kept everyone updated through carepages. Over the past three years I have followed many children's, as well as some adults, journeys with CHDs, Di George Syndrome, childhood cancer, traumatic brain injuries, and many other birth defects or childhood illnesses through their carepages. I have never met these people in person, but I feel as though I know them personally. I follow their struggles, their battles with insurance, their hospital stays, their times at home when they struggle to just have some normalcy. I cry over their updates, I pray with them and for them, my heart aches for them when things are not going well, and I rejoice with them when things turn around. I have "seen" many miracles through carepages, and I have also experienced many, many losses. Three years ago I had no idea that these defects/illnesses were so prevalent or just how horrible these journeys are or that research for these defects/illnesses are seriously under funded! Carepages has changed all that! I am currently praying for a little boy who was denied the treatment that his doctors recommended because his family's insurance refused to pay. The kicker is that MediCal would happily pay for the recommended treatment but he doesn't qualify because his Dad has a job and his parents own their home. Something is seriously wrong with this picture!
Recently, a carepage mom posted the following poem that she had written. While I'm not a "heart mom", I am a "heart aunt" and my perspective was dramatically changed when my niece became a child with a CHD. The poem very much puts many of my feelings into words, especially lesson six!
During Lila Rae's time in the hospital my sister in law kept everyone updated through carepages. Over the past three years I have followed many children's, as well as some adults, journeys with CHDs, Di George Syndrome, childhood cancer, traumatic brain injuries, and many other birth defects or childhood illnesses through their carepages. I have never met these people in person, but I feel as though I know them personally. I follow their struggles, their battles with insurance, their hospital stays, their times at home when they struggle to just have some normalcy. I cry over their updates, I pray with them and for them, my heart aches for them when things are not going well, and I rejoice with them when things turn around. I have "seen" many miracles through carepages, and I have also experienced many, many losses. Three years ago I had no idea that these defects/illnesses were so prevalent or just how horrible these journeys are or that research for these defects/illnesses are seriously under funded! Carepages has changed all that! I am currently praying for a little boy who was denied the treatment that his doctors recommended because his family's insurance refused to pay. The kicker is that MediCal would happily pay for the recommended treatment but he doesn't qualify because his Dad has a job and his parents own their home. Something is seriously wrong with this picture!
Recently, a carepage mom posted the following poem that she had written. While I'm not a "heart mom", I am a "heart aunt" and my perspective was dramatically changed when my niece became a child with a CHD. The poem very much puts many of my feelings into words, especially lesson six!
Heart mom lesson number ten...
Forget who you were...and who you have been,
Life is about...to take a detour,
And you will be shaken...to your very core.
You've just found out...something's not right,
How will you make it through this plight?
What can you do? What should you expect?
Of life with a child...with a heart defect?
Heart mom lesson number nine...
You'll learn to say...things are just fine,
When people stop... to just say hi,
There will be days...you long to cry.
Bound by worry,fear,and stress,
At times you'll think..."I am a mess",
You'll smile, thinking...can they tell?
Then say..."thank you were doing well".
Heart mom lesson number eight...
You'll learn just what it means to wait.
Patience is a virtue right?
Who really needs to sleep at night?
A hospital room... not a permanent state,
As each day passes... home must wait.
Patience is knowing...things won't stay the same,
Patience is accepting...a changing time frame.
Heart mom lesson seven here...
Our children's futures still aren't clear,
Innovations continue to thrive,
Each year more children will survive.
These children...and their families,
Will rise to fight...these CHD's.
Research...is imperative,
Our kid's deserve a chance...to live.
Heart mom lesson number six....
It's clear life holds no easy fix,
If life were perfect...in every way,
I guess...I'd have no need to pray,
I'd still be living...blind...and dim,
Forgetting...I must lean on HIM.
I cannot change the way things are,
But prayer makes God...seem not so far.
Heart mom lesson number five,
Cherish this day...your child's alive.
Today we frolicked in the snow,
(Did he like it? hmmm...well...no)
I watched him smile..as snowflakes fell,
I thought...thank God...he's doing well,
A bundled boy...warm hat...one glove,
No doubt about it...this is love.
Heart mom lesson number four...
There is always time for more,
More messes that need cleaning up,
More cartoons on t.v,
More yes...I'm gonna tickle you,
(The best things remain free)
More bubbles in the bathtub,
More stories...one more song,
More this little piggie went to market,
One more...just can't be wrong.
Heart mom lesson number three...
Their special hearts...help us to see...
Did I always understand?
That God holds our lives in his hand?
Before my child...I took for granted,
The gifts in my life...that God surely planted,
Before my eyes...I missed them...how?
My heart child came...I see them now.
Lesson number two...take heart...
It is okay,to fall apart... It's not easy, we don't know...
Will we watch our children grow?
God looks to his angels...saying see why I chose her,
She's never afraid to lose her composure...
In her heart...she feels defiled,
But nothing will stop her... from loving her child.
Heart mom lesson...number one...
It must be said...we're never done!
That day...will never come you see,
We'll always face uncertainty,
But I will face each day unknown,
Taking heart...I'm not alone,
These lessons... remind me to cope...
Stand strong...believe...and always hope...
~Stephanie Husted
Forget who you were...and who you have been,
Life is about...to take a detour,
And you will be shaken...to your very core.
You've just found out...something's not right,
How will you make it through this plight?
What can you do? What should you expect?
Of life with a child...with a heart defect?
Heart mom lesson number nine...
You'll learn to say...things are just fine,
When people stop... to just say hi,
There will be days...you long to cry.
Bound by worry,fear,and stress,
At times you'll think..."I am a mess",
You'll smile, thinking...can they tell?
Then say..."thank you were doing well".
Heart mom lesson number eight...
You'll learn just what it means to wait.
Patience is a virtue right?
Who really needs to sleep at night?
A hospital room... not a permanent state,
As each day passes... home must wait.
Patience is knowing...things won't stay the same,
Patience is accepting...a changing time frame.
Heart mom lesson seven here...
Our children's futures still aren't clear,
Innovations continue to thrive,
Each year more children will survive.
These children...and their families,
Will rise to fight...these CHD's.
Research...is imperative,
Our kid's deserve a chance...to live.
Heart mom lesson number six....
It's clear life holds no easy fix,
If life were perfect...in every way,
I guess...I'd have no need to pray,
I'd still be living...blind...and dim,
Forgetting...I must lean on HIM.
I cannot change the way things are,
But prayer makes God...seem not so far.
Heart mom lesson number five,
Cherish this day...your child's alive.
Today we frolicked in the snow,
(Did he like it? hmmm...well...no)
I watched him smile..as snowflakes fell,
I thought...thank God...he's doing well,
A bundled boy...warm hat...one glove,
No doubt about it...this is love.
Heart mom lesson number four...
There is always time for more,
More messes that need cleaning up,
More cartoons on t.v,
More yes...I'm gonna tickle you,
(The best things remain free)
More bubbles in the bathtub,
More stories...one more song,
More this little piggie went to market,
One more...just can't be wrong.
Heart mom lesson number three...
Their special hearts...help us to see...
Did I always understand?
That God holds our lives in his hand?
Before my child...I took for granted,
The gifts in my life...that God surely planted,
Before my eyes...I missed them...how?
My heart child came...I see them now.
Lesson number two...take heart...
It is okay,to fall apart... It's not easy, we don't know...
Will we watch our children grow?
God looks to his angels...saying see why I chose her,
She's never afraid to lose her composure...
In her heart...she feels defiled,
But nothing will stop her... from loving her child.
Heart mom lesson...number one...
It must be said...we're never done!
That day...will never come you see,
We'll always face uncertainty,
But I will face each day unknown,
Taking heart...I'm not alone,
These lessons... remind me to cope...
Stand strong...believe...and always hope...
~Stephanie Husted
If life were perfect in every way, then there would be no need to pray, I can't change the way things are, I must learn to lean on HIM. Lessons that I need to be reminded of on an all too frequent basis. Lessons that hold true in so many aspects of our life. God never promised us that life would be perfect, but He does promise that He will always be there if we will only TRUST Him.
Why was Lila Rae sent to us for such a short time? She taught us all to lean on the Lord, to love one another more deeply, to trust in His plan, and to rely on His peace. I also believe that she brought some of God's lost sheep back to Him.
Why was Lila Rae sent to us for such a short time? She taught us all to lean on the Lord, to love one another more deeply, to trust in His plan, and to rely on His peace. I also believe that she brought some of God's lost sheep back to Him.
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
~Jeremiah 29:11
Lastly, please watch the following CHD montage that an older CHD child created for CHD awareness. I know it is long, but please watch it to the end. It is a powerful video.
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