March 26, 2014

What Does the Bible Say About Having Children

I received the following email from a dear friend.  This is a question I get rather often both from ladies I encounter and here on my blog.  My friend has given me permission to share it here.  I hope it is thought provoking and helpful to someone else.  As always I encourage your input.  Keep in mind before writing or leaving a comment, this is my close friend and a real person with real feelings.  Don't say anything you would not want someone to say to you and likewise make sure you say it in a way you would want to receive it.  Secondly, these are my beliefs and opinions.  You have chosen to come here.  You do not have to agree but you do have to be kind.
Kathleen,
I have a weird question that I'm not even sure exactly how to ask so I'll just sort of send you my thoughts about the matter and ask for your response. 
I am wondering about having more children.  What does God expect?  I know Scripture tells us children are a blessing and He wants us to multiply, but I don't remember seeing anything about if you have the freedom to stop multiplying intentionally.  I would like to have more children but am terrified of doing so (reasons including my crazy hormones we've talked about before and if I can really handle more, my back, the fear of a C-section, and frankly labor and delivery.)  
But more so I am fearful that when I stand before God in heaven one day that He'll say something to the effect of "I wanted to give you more babies and had them ready for you, but you said no.  And now they don't exist and aren't with me because you were selfish." 
While I don't believe it's a sin to prevent further pregnancies (so long as they don't end in accidental miscarriage), I don't know if it's right, if that makes sense.  And while I know I'm not "old" yet I am 34 and so time is not on my side anymore so it's been weighing on my mind.  I do want more children but do not trust myself; yet I am also content with my [children I already have].  Another thing that is on my mind is that I feel like if I choose not to have more because of the reasons I listed, that it makes me a bad Christian and pathetic mother. 
and then in a second email... 
So in the past week I have realized a few things trying to pray and sort this out in my head, and here's what I've discovered: My 2 biggest things that convince me in either direction are: 1. If I ever do end up with a C-section that is detrimental to my back and I don't know how well I'll realistically be able to care for the [children] because my abs are what keeps my back in check.  [It] has confirmed that a C-section would be very difficult on me in that way.  So I feel like why risk it?  But then I feel like that's me not trusting God for that situation.  2. My biggest reason to continue having kids or at least releasing the control is that God has more for us and I'm not trusting Him and that by my selfishness other children won't be born to have the opportunity to love Him.  
Does He already plan out who He wants to make, and hopefully we as parents say yes?  Or does He base it on what He knows we will ultimately choose?  This is where free will and sovereignty paralyzes me.  Please tell me there's a black and white on this. 
I'm not sure how to sort through this besides praying and am seeking some counsel.  I welcome any and all!  Thanks so much. 
Dear Friend,

Knowing you as I do, I know you have agonized over this.  And while I am sorry for your suffering, I am grateful for the way you are always willing to put yourself out there and evaluate your position and consider what it is God wants for your life.  We could all do well to put so much time and thought and toil into seeking the will of God in our lives.  You are a blessing to me!  

So I get this question a lot.  I know, to some degree, you and I have discussed this before.  As you know, I have very strong opinions when it comes to what I believe.  This is definitely one of those topics.  If most people asked, I would give them a little answer, just enough to appease them, and then let it drop.  My beliefs on this topic get many people riled up and some people are even offended.  Because I do not believe it is an issue that pertains to salvation nor an issue that should define our fellowship, I don't typically see any reason in pursuing the topic to the point of others being upset.

I do very much believe, as in all things, that your decisions in this area should be made on your convictions from God with the Holy Spirit leading you.  We can not and should not move ahead on your opinion or mine.  You have known me enough years to know this is my stance.

However, I know you very well, too.  And I know 1- when you ask you really want an honest and complete answer 2-  you truly are seeking for God's will in your life 3-  you are strong enough to hear what I have to say and accept it in the love it is given.  I apologize in advance if what I say hurts you, you know it is never my intention.  Although, I know my black and white way of speaking does have such an effect sometimes. Just in case, I will just start off with an apology, not for my beliefs, but for my delivery.    

I count you as one of our most precious friends, but also in many ways I think of you as one of my girls.  So your question gave me two interesting perspectives to consider.  To avoid confusion I am copying and pasting bits and pieces of your original email below.  
"I am wondering about having more children.  What does God expect?"  
Scripture has already answered this question.  The very first command God ever made, in fact the very first time he spoke to man directly both face to face and in His word was to answer this question.  We see it in the very first chapter of the very first book of the Bible.
  
Genesis 1:28  "And God blessed them, and God said unto them, Be fruitful, and multiply, and replenish the earth, and subdue it: and have dominion over the fish of the sea, and over the fowl of the air, and over every living thing that moveth upon the earth."

That makes me think this multiplying business is rather important to Him.  He doesn't really give an option or a question about it.  He states it clear as can be.  No where in the Bible does he rescind this command.  In fact in Genesis 9:7 we see God has just wiped out all man and Noah and his family have just left the ark.  Immediately before giving the Noahic Covenant what does God do?  He repeats this command.

"And you, be ye fruitful, and multiply; bring forth abundantly in the earth, and multiply therein."


But God knew man in our sinful state couldn't obey simply because he told us to do something.  He encourages us on this issue further on in His word by giving us incentive and by letting us know children are our blessing, our inheritance, and our legacy.

Proverbs 17:6 Tells us children are the crown of old men; and the glory of children are their fathers.

Proverbs 31:28 Her Children arise up, and call her blessed;

Psalm 127:3-5  Lo, children are an heritage of the Lord: and the fruit of the womb is his reward.  As arrows are in the hand of a mighty man; so are children of the youth.  Happy is the man that hath his quiver full of them: they shall not be ashamed, but they shall speak with the enemies in the gate.

Psalm 128:3-5 Thy wife shall be as a fruitful vine by the sides of thine house: thy children like olive plants round about thy table.  Behold, that thus shall the man be blessed that feareth the Lord.  The Lord shall bless thee out of Zion: and thou shalt see the good of Jerusalem all the days of thy life."

Furthermore, if we look back at Genesis 1:28 you will note the command to be fruitful and multiply was part of the blessing God gave to Adam in the garden. Many other verses reiterate this same blessing.  For space and time's sake I will leave it to you to study it out in more detail.


Let us consider something else.  This fact of children being a blessing was never questioned in the Bible.  In fact, it was so accepted as truth when a woman did not bare children she was looked upon as being out of God's favor.  A study of the lives of Hannah, Sarah, Rachel, Elisabeth, Rebekah... and others will help you to see what I mean here.  It was a women's shame to not have children.

(I do want to make it clear I believe God has many reasons for not giving children to some couples and it is not necessarily because a woman is out of God's will.  Oftentimes it is because God needs a couple to focus on something else or even because as I know in the case of a number of dear friends it is for a couple to provide a family for children through adoption.  But this is a big topic for another time.)

This idea of blessing goes even deeper if we look further in scripture.  The more children a man or woman had, the greater the blessing.  Take a look at the Abrahamic covenant.  This was such an amazing blessing because the number of children were too great to even count... as the stars, as the sand, as the dust of the earth.  No where do we see Abraham saying, "But Lord, I can't afford to feed all those kids."  or "We don't have enough bedrooms for them."  or even "All those kids will make us nuts."  No.  The patriarchs and kings just worshiped and praised God for the blessings as each was received.
  
And, this idea was the general belief among all religions and all nations until this near modern day.  In fact, even in the United States, as recently as 1873, birth control was illegal.  I don't want to go too much into the idea of birth control because it is really another very involved topic which ultimately does not apply to this discussion about God's will and our hearts.  However, it might be interesting to note, this idea of limiting our blessings through children did not come around until the last century.  When it did come on the scene, it might be sobering to understand the idea of limiting children and birth control came about as part of planned parenthood, the eugenics movement and Darwinism.  Yikes!  
"I know Scripture tells us children are a blessing and He wants us to multiply, but I don't remember seeing anything about if you have the freedom to stop multiplying intentionally...  While I don't believe it's a sin to prevent further pregnancies (so long as they don't end in accidental miscarriage), I don't know if it's right, if that makes sense. " 
Many people suggest the Bible only addresses the idea of abortion and not the idea of limiting children.  However, I think it is debatable.  Consider Matthew 19:14 

"But Jesus said, Suffer little children, and forbid them not, to come unto me: for of such is the kingdom of heaven."  


The apostles were forbidding the children to come and sit with Jesus however, do we forbid children to come to Jesus by not allowing ourselves to be the vessel of God in giving them life?


And in considering this idea of limiting our children one might reflect on this question.  If God were heaping financial blessings on us would we attempt to limit him?  No!  Actually, I can think of no other blessings a person would intentionally choose to limit God in giving.  Christians have given Satan much ground on this issue.  We have tried to make it look noble in many ways... I can be a better parent if I have less children... I can do more work for God if I have less children... I will have more money to give... etc... but I think the real truth is in receiving the blessing of children we have to give something of ourselves.  And we don't want to do so.  When you ultimately come down to it, people limit their children for one reason and one reason only... selfishness.  Receiving such a blessing might actually require something of us... our time, our finances, our freedom...  So we say, WOAH!

When really what we ought to be saying is:  Do I trust God when he says He will give me what I can do through Him?  Do I trust God to raise up these arrows for His glory?  Do I trust God to make financial and material provisions for as many children as He chooses to give me?
  
And so we limit our blessings.  It is interesting to note in those families where couples have told us they limited their children because they couldn't afford it, they struggle financially.  Yet in families where we see no realistic way of supporting a large number of children I see God providing for every need in ways no one can understand.  People often say to me, "You have such a large family and your kids are always dressed nicely and you have a lovely home and property and you take vacations each year.  How do you do it?"  The fact is, we don't.  God does it.  I will never understand how we manage financially but somehow God has always stretched our means to support what He has given us.  Not only does He meet our needs, He often gives us the desires of our hearts and he allows us to minister to the needs of others.  One of the things that was very important to my husband is to be able to give to others and when we see a need around us God has always put the finances before us to do just that.
  
But God's provision isn't just financial.  As a young mother I struggled with patience but as I trusted God to help me in that area He gave me more and more children until I realized one day I don't struggle with patience at all!  
"But more so I am fearful that when I stand before God in heaven one day that He'll say something to the effect of "I wanted to give you more babies and had them ready for you, but you said no.  And now they don't exist and aren't with me because you were selfish... "
While I hate to agree with you, I do believe not having more children is selfish and self centered.  But the thing is, the one you are hurting most by making this decision is yourself.  These lives will indeed never have the opportunity to live and know the honor of serving our God because of your choice, but nor will they suffer because what does not exist can not know sorrow.  However, you are denying yourself and your family the joy of knowing the full extent of God's blessing.  You are limiting the work God can do through you.

Consider our family can do a lot with what God has given us.  But what if we had decided to stop after Carmella?  We could still do a whole lot.  But wow!  What amazing blessings we have reaped this last year in the life of Addison!  We have seen so many lives touched.  Almost everyday someone writes, or stops me for the only purpose to tell me how their lives were enriched because they know our son.  You, and most Christians, agree aborting him would have been wrong, but look at how much work God wanted to do with Addison which would have been prevented if we said 8 kids is enough!  Don't you think something is wrong? 
"I would like to have more children but am terrified of doing so (reasons including my crazy hormones we've talked about before and if I can really handle more, my back, the fear of a C-section, and frankly labor and delivery.)  If I ever do end up with a C-section that is detrimental to my back and I don't know how well I'll realistically be able to care for the girls because my abs are what keeps my back in check.  So I feel like why risk it?  But then I feel like that's me not trusting God for that situation. And while I know I'm not "old" yet I am 34 and so time is not on my side anymore so it's been weighing on my mind.  I do want more children but do not trust myself; yet I am also content with my [Children I already have]"
In general to this I would say:

God does not give the spirit of fear.  Fear is of Satan and giving in to fear is giving ground to Satan.    

Second, it is not about what you can handle but about what you can trust God to handle.  By using your fears as a reason to limit your children you are really saying you don't trust God to care for your health, or to help you overcome your sins in the area of your emotions. Third, I will illustrate with an example from my own life.  After I was diagnosed with diabetes in 2005, Allen was very concerned having more children would be more than my body could handle.  We chose to trust God.  And I am so glad we did.  I can't imagine our life without Elisabeth, Carmella, Henry or even Gussie.  Furthermore, it is interesting to note, although my pregnancies have grown progressively harder, God has given me so many blessings through those hard trials.  And even though diabetes was Allen's greatest concern, my non pregnant glucose continues to be well controlled without any medication.  This is something which can only be explained by God's intervention.  Doctor's are always impressed at the level of control I can get without medical intervention.  And while we take the standard precautions for diabetics in pregnancy and newborns of diabetics none of our children have ever shown one side effect or complication of diabetes.    


And, yes, I suppose you could have a C-section and you could have further back problems as a result.  But then again, you could get in your car and die on the way to my house, too.  Does that mean you stop coming to my house?  No, because if you give in to such a way of thinking eventually you will never leave your house or live life at all.  You make wise decisions like not drinking and driving.  You make sure your car is in good working order.  You drive carefully and stay alert to other drivers.  But in the end you trust God to get you from there to here and back again safely.  And if you crash on the way there, you know it is in His will and He will give you grace and help you rise to victory. As for labor and delivery and a C-section, I think that is a plain stupid reason for not having more children.  I am sorry, I know it likely sounds harsh and judgmental but there it is.    I've been through it many times and typically without medication so I feel I have earned the right to talk honestly on this topic.  It's not a walk in the park, but labor and delivery is certainly manageable or God wouldn't allow it.  Women make way too much out of it and I think usually it is because they feel it is an area they can trump men. 

Not to say it is not challenging and down right painful.  Just the same, it can be done.  God would never ask us to do something we are not able to do.  It only lasts for a finite amount of time and then it is done.  And look what you have to show for it!  A wonderful life to hold, to love and to mold for God's glory!  A small price to pay, indeed.  Quite frankly, there were times, like when Addison was induced,  I just didn't think I was up to it.  I was so sick for so long and so exhausted.  For that God has allowed us pain medication.  Of course, jokes on me, because as you know the epidural caused more problems than it did good.  But guess what, God gave me the strength to come through it and he has given you the strength to come through it.  And he will continue to do so.

Which is such a beautiful picture of the mercy of our God.  Let us remember the trials of pregnancy, labor and delivery are the direct result and judgement on women because of the fall in the garden.  And, yet, He gives us the grace to come through it.  If this is what keeps you from having more children I will tell you what I tell my kids... suck it up and deal with it.  There are far worse things in life.   

Probably the most disconcerting thing about this email, and the many other emails and conversations I have had with women on this topic, is the number of times the words, "I, Me and My" come up.  The greatest mistake any child of God can make is thinking this life belongs to us.  It does not.  Any decision centered around those pronouns or those ideas will always be wrongly decided because the focus is not where it needs to be, which is on the words HIM, our God, our Lord and our Savior.
"Another thing that is on my mind is that I feel like if I choose not to have more because of the reasons I listed, that it makes me a bad Christian and pathetic mother." 
You already know what I am going to say to this statement.  But just in case, I will say it anyway.  One of the worse reasons to do anything in this life is because you are worried about how it makes you appear.  While maintaining our testimony is important, we should never do anything if it is not out of the utmost love and obedience to our Lord and His ultimate will.  If you are doing what is right in God's eyes, but you are not doing it for the right reasons He will not bless it.  

2 Chronicles 25:2 says, "And he did that which was right in the sight of the Lord, but not with a perfect heart."  

I have known many women who have large families because it seemed like the "Christian" thing to do or because their husbands wanted it.  But their hearts were not in it.  They had never surrendered this part of their life to God.  They are miserable and unhappy women.  They live their lives in obedience but not joy.  They are bitter and angry.  Oh, they may put on a smiling face because that's what they are supposed to do.  But if you are their confidant what you learn is their families are unhappy.  Their children are rebellious.  And the kids they supposedly bore for God's glory can not wait to grow up and get away from anything that has to do with God or the church.  

When I was a young mother and a young Christian, a friend of mine had just given birth to her 8th child.  She and her husband were big advocates of the movement to leave your child bearing to God.  Allen and I had wanted a big family and recently been told we would not be able to have anymore children despite the many therapies we had gone through.  I was so excited for this family.  Anyway, we were visiting and I was checking out her brand new baby.  My heart was rejoicing and breaking all at the same time.  I asked her if they would have any more children.  Do you know what this woman said to me?  She said she was praying God would not give her anymore children so she could just focus on training the ones they had.  It has been a long time but I can still hear her voice as clear as if it was today.  Do you know what such a statement said to me?  Even though she told women this should be up to God, she had never really, in her heart, given it over to the Lord.  This women was much like myself today, in that she had a newborn but also grown daughters.  Her grown daughters were close friends of mine.  One time we were visiting and one of her girls confided in me she wasn't interested in getting married because she didn't want children.  What does this say to me?  Her mother's attitude had rubbed off well on her.  

I guess what I really want to point out in sharing this example, is if you are doing something just because it is the right thing to do, you may do more harm than good.  In all things, we need to really seek the will of God in truth and honesty and allow Him to mold our hearts, our thoughts and our opinions into what He wants them to be.  We can not just do what everyone else is doing, even if it is what is right in God's eyes, because that is not true love and obedience.  

If I ask one of my kids to do something and they put on a smile and do it with all their heart and their best ability while singing a happy song... well, it makes my heart sing.  But when they do it with a grudging heart, and I can tell the difference even if they do everything outwardly right, it brings me no pleasure and even grates on my nerves.  I imagine God feels the same when we don't have a right heart.  So to anyone who is reading this I would say if you are contemplating having more children because you think it is the right thing to do in order to be a good mother or a good Christian, but you are not really convinced of the will of God,  I would advise you to not do so.  
My biggest reason to continue having kids or at least releasing the control is that God has more for us and I'm not trusting Him and that by my selfishness other children won't be born to have the opportunity to love Him.  Does He already plan out who He wants to make, and hopefully we as parents say yes?  Or does He base it on what He knows we will ultimately choose?  This is where free will and sovereignty paralyzes me.  Please tell me there's a black and white on this. 
Well, sweet friend.  I just don't know if there is a black and white on this.  It goes back to long debated and age old questions where the will of God is concerned.  Unfortunately, until we walk with our Lord I don't know if we will be able to say either way with 100% certainty.  But you know, I don't know if the answer really matters.  Because the need to trust God and follow His will doesn't change, does it?  

Before I close this post, I want to touch on one more topic specifically with the young women who are not yet married.  This is an area of your life you need to seek God on now.  Before you consider marriage you need to know where you stand in your beliefs.  Before you ever consider anyone for marriage you need to know that you are both in the same place where children are concerned.  I am constantly shocked at how many couples enter into marriage with completely different view points on child bearing, contraception and how to train children.  It seems to me since this is one of the biggest parts of married life, couples would settle on these issues before they even begin courting.  Disagreement in the area of children can be such a strain on a marriage.  I can not tell you how many couples Allen and I have counseled where the husband and wife have opposing views.  It creates such much hurt within the marriage and I believe can also damage a person's personal relationship with the Lord.  It is hard to walk with the Lord when you feel you should be doing one thing but your spouse has chosen another route.  

And parents, while I do not think this is a topic we should decide for our young people, we do need to be having thought provoking, open and honest, God seeking, prayerful, Word searching talks with our young adults concerning children.  This is at least as important as teaching our daughters how to be a good wife, how to run a home or how to cook.

Well, dear reader, if you have not completely zoned out at this point, please take time to share your thoughts on this topic?  Let's have an informative discussion that will encourage and edify the many young women who read this blog.

Until next time,

Kat

March 22, 2014

Frozen

My girlies LOVE their Disney Princess dolls.  Before she could sit up on her own, Carmella was playing Princesses with Elisabeth.  I LOVE the way these two are inseparable.  And I LOVE the way when they are separated Carmella wanders around saying, "Where's Ellie?"  And even though she has a wonderful room of her own I LOVE the way Carmella begs to sleep in Ellie's room.  I can think of few things more wonderful in a little girl's life than the love shared between sisters.  Not having my sister as part of my life breaks my heart EVERY SINGLE DAY.  Because of that I have prayed and purposed for all my years as a parent to teach my children the value of such a relationship.  And I LOVE that my five daughters cherish each other have and these wonderful years they have together to build many memories to last them when life will surely take them separate ways.    

When the Frozen movie came out, I didn't really care one way or the other.  I have been very disappointed in the last few Disney releases like the Princess and the Frog.  Which was so sad to me.  I love Princess Tiana.  I think she is beautiful, as was her green dress.  She was slated to be my favorite Princess.  But the movie so seriously stunk in more ways than I can name here.  Bottom line, I didn't put much stock in this new one.  Just the same, I had planned to take Elisabeth to see the movie for her December birthday.  And then she got sick and that was that.  For Christmas, Brianna went to great lengths to get the Princess dolls for Carmella and Elisabeth.  I thought it was kind of silly because they have lots of Princess dolls.  And like all fads, the popularity will pass and the dolls will be both readily available and much less expensive.  Of course, they were a big old hit with our little princesses.  These dolls have traveled all over with us in the last few months.  (In fact, we lost one of Elsa's shoes somewhere around Detroit.  Oops.)
But to be honest, I still didn't give a whole lot of thought to the video.  Thank goodness for our girls they have a father who keeps up on things like new DVD releases.  He had the forethought to pre-order on Amazon so it would be here before the official release.  Why that matters, I don't know, since we wouldn't be watching it until our Friday movie night.  But there you have it.  And in the meantime our girlies were preparing for the big day.  Making costumes and pulling wigs out of the dress up box.  Of course, Kaitlin mastered the hair styles and they were all ready to go.  At dinner the other night Emma said, "I know what all the conversation will be about with the eight and under girls on Sunday."  I was temporarily clueless and then they reminded me.  Oh, yeah.  The new video.  (I had a busy week... give me a little slack!)  We all had a little chuckle imagining Elisabeth and her Princess friends all talking about Frozen.  But we really started laughing when we learned that Allen and the other Princess dads were already talking about it in anticipation of what was coming this week.  
So school had to be put on hold Friday morning so everyone could make costumes because the boys had to be in on the fun.

There weren't enough characters on the case so the girls googled Frozen characters to come up with this fellow for Nathaniel.  He came to school dressed like this on Friday.  That hat just killed me!  Every time, I looked up at him I burst out laughing again.  I'm not sure how much how much we actually got done in math.
 So Friday night we had some neighbors in and the girls made pizza and we were all in for a shock.  Within the first ten minutes the kids were passing me kleenex.  Seriously, after watching my girls play Elsa and Anna together for months it ripped my heart out to see these two sisters separated.  And then when their parents died... well, gee!  What kind of movie is that?
Carmella kept asking every two minutes, "Where is Elsa???"  And I was on the edge of my seat hoping Elsa wouldn't do something to completely destroy Carmella's love for her.  Three cups of root beer later and Carmella was smiling and still hugging Elsa.  As soon as the movie was over she asked if we could watch it again, so I am guessing it turned out Okay for our littlest princess.  

Samuel was devastated to realize he had cast himself as a bad guy.  Who knew?  If that wasn't upsetting enough, when Hans was making his way back to the castle Sam was pacing the floor and shouting, "Kiss her already!"
When I was tucking Carmella and Elisabeth, along with their Elsa and Anna dolls, into bed we were talking about the movie and how the sisters loved each other so much they were willing to sacrifice themselves for the other.  Elisabeth burst into tears.  Yeah, tears.

And yet, despite all that everyone tells me they liked Frozen.   Well, almost everyone.  Nathaniel came to me while I was getting ready for bed and said he didn't like the magic.  I do have to agree with him.  I do find it bothersome the way almost every kids movie now has something to do with magic.  And people seem to completely ignore the fact that such powers come from Satan.  But putting it aside, I liked Frozen way more than I expected I would.  I would definitely watch it again.  I liked that it wasn't filled with the rebellious spirit of Rapunzel and many other Disney films.  I like that while you had the necessary protagonist the film was not overly full of violence or fearful scenes that sent my girls hiding behind the coffee table.  Although, I do think the score of Rapunzel was better than Frozen, the musical performers of Frozen were far superior.  Oh and for those among us who remember seeing the likes of Snow White in the theaters, Animation sure has come a long way since I was Elisabeth's age!  

Despite the magic, despite the trauma caused to my boys, and not because of the animation nor the music, Frozen will find a place on our family movie shelf for one reason, and one reason only.   I like the sister relationship.  Such beautiful examples of what siblings should be to each other are rare and few between in this world.  Every where you look there are brothers and sisters fighting and bickering.  Families who don't speak to each other, talking behind each others backs, or striking out in bitterness and strife.  These kind of negative examples are portrayed as norm in media.  And while it is the most common behavior, it is indeed not normal.  It is not what God planned.  It is not what we are to live up to.  It is not what I want for my children.  

I loved the precious relationship of Elsa and Anna, as young girls and as grown women when faced with what appeared to be an impossible situation.  It might be just a movie, but it is the sort of relationship I want my girls to have.  I hope they look beyond the magic and allow this example to be emblazoned on their sisterhood forever.    


March 21, 2014

World Down Syndrome Day 2014

Today is World Down Syndrome Day. 3/21, after the three copies of the 21st chromosome. A day dedicated to celebrating Down Syndrome and celebrating life.
In honor of World Down Syndrome day...


p.s. check out the special promotion A Stitch In Lives is hosting for Wold Down Syndrome Day here...

March 20, 2014

A Day of Blessings and Answered Prayers

After an awful lot of hard months full of bad news and unanswered questions we had a day full of good news and blessings yesterday.

Addison had his annual visit with the cardiologist Wednesday. Dr. M said the hole in Addison's heart has closed by 50% since his last echo.  He does not anticipate Addison will ever need any intervention. He will do a repeat echocardiogram next year or annually until it fully closes.  Addison was his usual charming self and kept us all smiling and laughing.
While we were in the waiting room at Children's I got a phone call from Addison's ENT.  There was a scheduling issue with his appointment for his surgery followup and repeat audiology evaluation on Thursday.  The Audiologist was in and said if we didn't mind waiting a few minutes she would do the audiology evaluation so we didn't have to travel back to Children's the next day and then again next week.  We were really grateful for her offer.  Addison has 14 appointments in a four week period with evaluations and therapy.  Anything we can do to have one more day at home is a huge blessing.

Anyway, we had been planning to visit Madison while we were at Children's but she, and apparently most of the hospital, came down with a stomach bug, so we opted to delay our visit.  I text her mom to let her know I was sending a package via Addison's cardiologist and she text back to say she had just gotten word the doctors had agreed to discharge Madison!

Way to go, Madison! This was very unexpected.  She has always required at least a month of recovery time in the hospital post surgery.  This time she even came down with a nasty stomach bug.  Still her doctors determined she was strong enough to go home just one week after her surgery.  Wow!  Keep it up precious girl.  You can read Madison's continuing journey at Her Life Worth Living.  Believe me when I say this cookie is going to make a mark on this world!

So as we were in the waiting room, Addison was getting very sleepy.  He had already missed one nap and it was well into time for his afternoon nap.  I was kind of worried he wouldn't do well on the hearing test because he was so sleepy.  He tends to get less responsive as he gets more tired.  It ended up working well, though.  One of the tests they do he needs to be asleep for and he snoozed right through it.  As a matter of fact, for another of the tests it needs to be very quiet.  Addison was sleeping so soundly that his snoring was interfering with the test.  She was able to get all the data, though.  Dr. J said the tubes are working perfectly.  In fact, Addison passed all hearing tests within normal limits!  We told him we are wise to him now.  We know he is just ignoring us.  Next step is to find out why he is not responding and to get to work on those language skills.  But today we are just rejoicing in the fact that our guy hears when we sing to him, and tell him we love him and read the Word to him.  Yeah, Addison!

As a final note when I logged into my email this morning I got the news Bill 654, the Down Syndrome pro information bill, has passed the Senate.  Next stop is the house.  Keep praying!  God is working in great and marvelous ways!

We are simply so excited to see all God is doing and the many prayers He is answering! What a good and faithful God we serve!  How has God been working in your life lately?

March 19, 2014

Rome Restaurant serves up new attitude toward Down Syndrome

'I love being here,' says staff member of restaurant where majority are handicapped

Simone Ippoliti (2nd L), a young waiter with Down syndrome, jokes with customers next to his colleague Alessandro Giusto (R) at the Girasoli restaurant in Rome on January 28, 2014 ( Gabriel Bouys (AFP/File) )
It was another busy night for the staff with Down syndrome at the Girasoli restaurant in Rome, which serves up traditional pizza and pasta dishes along with a new way of looking at disability in the workplace.

The neon-signed restaurant was set up in a suburb southeast of the Italian capital by the parents of children with disabilities, and it functions just like any other eatery -- except 13 of its 18 employees are handicapped.

"I love this room, monitoring it, making myself available, being in contact with people," said Simone, a 24-year-old who after a paid internship of 600 hours now has a permanent contract with Girasoli (Sunflowers).  "And above all I just love being here!" he said.

When a group of women came in Simone deftly showed them to a table, clutching a few menus in his hand.  "We heard good things about it so we wanted to come," said one woman, while her friend added: "Basically it's a normal restaurant -- except the waiters are nice!"
Alessandro Giusto (c) plaisante avec les clients au restaurant la Locanda, à Rome, le 28 janvier 2014 ( Gabriel Bouys (AFP) )

As he tucked into an amatriciana pasta dish, 64-year-old teacher Giuseppe said: "When you come here for the first time, you have certain expectations but you quickly realize that there is no need to have them!"

The restaurant was set up in 2000 and is aimed at offering work to people with Down syndrome -- a genetic disorder usually associated with physical growth delays and intellectual disability but many manage to complete university degrees and hold down jobs.

"My waiters do their job and do it very well," said chief waiter Ugo Menghini, who is not handicapped, praising the efficiency and speed of his staff.  "If I was to set up my own business, I wouldn't hesitate, I would hire people with Down syndrome."

'It's a great victory'

Like many businesses in Italy, the restaurant has been hit by the recession and was forced to shut for several months last year for restructuring and renovation.
Alessandro Giusto (C), a young man with Down syndrome, serves a pizza at the Girasoli restaurant in Rome on January 28, 2014 ( Gabriel Bouys (AFP/File) )
It is now being run by Consorzio Sintesi, a social co-operative association which specializes in giving jobs to disabled people and also manages three call-centers for the Italian mobile phone operator Wind.  "The state pushes for assistance but we prefer professional training. Everything here is self-financed with no subsidies from the state," Enzo Rimicci, the head of the association, told AFP.

"Every employee here manages to find their place based on their skills," Rimicci said, explaining for example how one staffer, Marco, was too shy to work with customers but proved to be "a real machine" in the kitchen.
"Seen close up, no one is normal," he said, repeating an old Roman proverb that he likes.

The restaurant's training is rigorous and out of the 13 employees with Down syndrome, nine are still interns.  When Girasoli is closed in the morning, another team comes in to make cookies and cakes for the evening customers. 

Anna, a 22-year-old waitress, came in even on her night off to have dinner with her parents.
"For us, for her it's a great victory," said her father, Carlo, tearing up as he described his daughter's transformation since she started work.  "Our daughter has gained autonomy. When she comes home from work, she is happy, proud of what she's done," he said, adding that Anna had also made progress "in how she relates to other people, in her language."

A further sign of the restaurant's success is that another one is in the works.  A new one is expected to open soon in Palermo in Sicily and Rimicci said there were even plans to turn the idea into a franchise and create many more outlets.

originally published at http://gulfnews.com/news/world/other-world/rome-restaurant-serving-new-attitude-to-down-s-syndrome-1.1290927

March 18, 2014

Punky

Cute Irish cartoon featuring Punky, a six year old girl with Down Syndrome.  Punky is voiced by Aimee Richardson, who also has Down Syndrome.
 

March 17, 2014

So Lucky He is Ours

It's March and the Luck of the Irish is upon us.  Not that we believe in luck.  But go along with me a minute.
People living with down syndrome have beat a lot of odds to live.
Doctors estimate that at least 80% of all babies conceived with Down Syndrome are miscarried or stillborn.
Furthermore, 90-95% of mothers who receive a prenatal diagnosis of Down Syndrome choose abortion.
Once they are born, babies with Down syndrome have a 60% chance of having a severe congenital heart defect.  Conditions so severe that even 30 years ago these children would not made it out of infancy.
And yet 6000 children were born in the United States last year with Down Syndrome.

And they are not just surviving, but they are THRIVING!
Those are some odds, don't you think?
Today, we feel so LUCKY he is ours!
Special thanks to my friend, Jen T at Many Blessings, Busy Life for making the skirts and bowtie for this photo shoot.  You can check out Jen's Etsy shop at Lots A Blessings

March 16, 2014

Dear Future Mom


For the third consecutive year, Saatchi & Saatchi is launching a campaign for CoorDown in celebration of World Down Syndrome Day, which will occur on March 21st. The theme for this year’s World Down Syndrome Day is “the right to happiness and well-being of people with Down syndrome,” with the goal being to “promote a culture of diversity and true integration into society, especially in the worlds of school and work.”

Saatchi & Saatchi’s campaign was inspired by an email that an pregnant mother, expecting a child with Down’s syndrome, sent to CoorDown. “What kind of life will my child have?” the mother asks.

To respond to the expectant mother, and others like her, Saatchi & Saatchi filmed responses from 15 individuals with Down syndrome from across Europe, in their native languages. Through the CoorDown YouTube channel this group replies to the mother’s question, answering that her son can expect a happy life, just like theirs. “He’ll be able to hug you,” says one man; “He’ll be able to talk and tell you he loves you,” promises another girl. They explain that the woman can expect her son to go to school, and later get a job and be able to take her out to dinner on his salary. “Sometimes it will be difficult. Very difficult. Almost impossible.” the group admits, “But isn’t it like that for all mothers?” It’s a really touching video, and a perfect encapsulation of this year’s World Down Syndrome Day theme.

This year, CoorDown Onlus — Coordinator of the National Association of people with Down syndrome — will lead “an international project which includes ten associations from nine different countries: Italy, France, Spain, Croatia, Germany, England, Russia, United States and New Zealand.” The “Dear Future Mom” also has a social component, built around the official hashtag #DearFutureMom.

As mentioned, the campaign marks the third consecutive year Saatchi & Saatchi has teamed up with CoorDown. Their previous two campaigns met with tremendous success, including 11 Lions at the last two Cannes International Festivals of Creativity and a Grand Prix at ADCE. Stick around for credits after the jump. 

March 15, 2014

Myths about Kids with Down Syndrome

Myth #1:
Kids with Down Syndrome are not intelligent
There is probably no older or more enduring myth than the myth that if a person has an injury to the central nervous system that person is automatically stupid. It is possible to be profoundly injured and be highly intelligent. Speech is a big part of this myth. If a child cannot talk normally then it is assumed that the child is intellectually abnormal. If a child cannot talk at all it may be assumed that the child understands absolutely nothing even though that child may understand absolutely everything. The myth that kids with Down Syndrome are stupid is not only incorrect it is dangerously incorrect. It is this myth that has permitted kids and adults with Down Syndrome to be warehoused and forgotten or left to die on the assumption that they had little or no understanding any way.                    

Myth #2:
Once the brain is injured there is no way to fix it
Fact: The brain grows by use. We have to go back to the beginning of the last century to find scientists who believed that once the brain was injured it was beyond repair. The beginning of the last century was a kind of Dark Ages for the human brain. But luckily at about the same time a new light was breaking in - neurophysiologists began to discover that the brain had considerable powers of recuperation and recovery. Research as early as 1915 showed that the brain actually grows by use. Modern neurophysiologists have been demonstrating this quite elegantly in the laboratory for a hundred years now. Now we have a new word “neuroplasticity”. It means the brain grows by use.

Myth #3:
Kids with Down Syndrome are better off with other Down Syndrome kids
Really? It is hard to believe that anyone ever really believed this since there is absolutely no evidence to support it whatsoever. If a child with Down Syndrome is placed with another child who bites, it is likely he will learn to bite. If he is placed with children who scream, it is likely he will scream. If he is placed with children who hit others, it is likely he will hit others. The next child with Down Syndrome who learns how to walk, talk, read, write or share from watching other kids with Down Syndrome do so will likely be the first child in history to do so.  Children with Down Syndrome need well adults, not other children with Down Syndrome, to help them. Top choices: mother, father, grandmother and grandfather.

Myth #4: 
Mothers and fathers are too emotionally involved with their Down Syndrome child

Is there any power as great as the power of a mother or father to love their child and to protect their child? No disrespect to alligators but they are probably not “too emotionally involved” with their youngsters. Is that a good thing for the baby alligator or a bad thing? Are mothers and fathers emotionally involved with their children with Down Syndrome? Let us hope so. Is it possible to be too close, too concerned, too conscientious, or too determined when faced with a child who has a serious problem? Probably not.

Myth #5: 
Kids with Down Syndrome cause problems for their brothers and sisters
This is a myth in which there can be some truth. If we do nothing to save the child with Down Syndrome and he is left to languish while brother and sister march on with their lives then there is little doubt that his very existence will cause a gigantic problem for his well brother and his well sister. For they must ask themselves every morning when they wake up and every night when they go to sleep “Why do I have a life and my brother or sister does not?” Why indeed. But if we set about to save the child with Down Syndrome we enlist the help of brother and sister. Now they are a part of a real team working to give their brother or sister a fighting chance to have a real life. They get to jump in the swimming pool every day and pull their brother or sister out. They are the only kids on their block who have this stellar opportunity to grow up every day. Their brother’s victories are their victories, their sister’s frustrations are their frustrations. The family is a team saving the life of a family member. Win or lose they are fighting the good fight to find a solution. This, and only this, is their salvation.
From the Institutes for the Achievement of Human Potential

March 13, 2014

Raising Henry: A Memoir of Motherhood, Disability and Discovery by Rachel Adams

When we received Henry's diagnosis of Down Syndrome I started searching for books on the topic.  I was certainly immersing myself in therapy and teaching books.  But I wanted something more.  I wanted to read about real people, their struggles and their victories.  Of course, my first stop was my favorite book store, Amazon.com.  I typed Down Syndrome into the search bar.  After clicking on a few items here and there I arrived at a book entitled Raising Henry:  A Memoir of Motherhood, Disability, and Discovery.  Of course this caught my eye right away because it was about Down Syndrome and a boy named Henry.  My excitement quickly turned to disappointment as I realized this book was not yet released.  I added it to my wish list and completely forgot all about it.  Until Emma presented me with a present.

In the meantime, I have compiled a huge library of books on the topic.  But quite frankly, they are all more than a little disappointing.  Oh, I might have gleaned a little something from here or there but overall when I am finished reading these books I feel 1- discouraged 2- overwhelmed 3- angry.  Truly, it seems like one book after another is about moms who can't make up their minds.  On one hand they tell us how we should choose life for people with Down Syndrome.  While on the other hand they are telling us how horrible everything is.  I reviewed one book last year in which a mother wrote of the horrid image doctors gave of down syndrome and how terrible the stance of the medical field is.  But interwoven with her daughters biography was her own story of alcoholism and severe depression that resulted from raising a child with down syndrome.  I have never been able to reconcile those two ideas.  And I admit that is probably in large part due to the fact that I am not a merciful person.  In all things I believe there is a point where you get up, brush yourself off and move on... no matter what the circumstances may be.  Is this easy?  No.  But you do it.

At any rate, while reading these sorts of stories I always end up asking myself the same question.  How can the world view Down Syndrome in a positive light when the books written by the mothers of people with down syndrome are so full of dread?  I am not saying there are not difficult things to face in T21, that's what trials are, duh.  I am saying we need to deal less with the negative and more with the positive.  We need to put a positive, and yet honest, foot forward for the world to see.

Rachel Adam's and Family
And that is what Rachel Adams book, Raising Henry:  A Memoir of Motherhood, Disability and Discovery does.  Ms. Adams is completely transparent.  She openly shares her emotions and thought processes in her journey of Ds.  She shares her honest emotions, not in a "pity party this is what I thought and this is what you should think" sort of way but rather in a self evaluating, growing, changing and learning way.  She uses the sum of her life experiences as a professor, writer, literary critic and mother to consider her positions on disability, abortion, early intervention and life raising a son with down syndrome.  Rachel is not afraid to say she doesn't know what the right answer is or even what I thought was the answer is indeed wrong.  As I was reading Raising Henry, there were times when I could sense Rachel working and weeding through things to figure out where she herself stood.

And where she stands is rarely where I stand.  For example, the Adams family live in the world of Academia in Manhattan.  Her husband is a lawyer and she a professor at Columbia University.  Where all of life is about choice and personal decision.  They are surrounded by the intellectually elite.  There is no room left for God or imperfection.  Rachel boldly speaks of how she arrived at this realization when her second son was diagnosed with down syndrome.  She seems to have a conflict with these beliefs which permeate every corner of her life, and yet she continues to choose to live in that world.  A world that questions how she, someone with multiple PHD's, could possibly forgo prenatal testing and risk her life being hampered by a child with a disability.

One of the contradictions that struck me was Rachel's stance on abortion.  Early in the book she shares the story of her sister's decision to abort her baby prenatally diagnosed with Trisomy 13.  She shares the ongoing haunting dreams of the nephew she never knew because of this choice.  She explains how she once believed abortion was the answer to children with down syndrome and her how she now realizes this was a mistaken position.  She works endlessly to educate the world and make it a better place for people with disability.  And yet she still clearly states women should have the choice to abort the unborn for any reason.  
This confounds me.  And yet, I am encouraged as I see Rachel taking the lessons she has learned from Henry and using the inroads she has gained through this world so foreign to me to enact positive change in the medical field and world of higher education and to change the way the world views people with disabilities.
      
Rachel and Henry Adams
But that is not all.  Ms. Adams shares a wealth of information surrounding the history of individuals with disabilities covering laws, education, medical care and the history of institutionalization and mainstreaming.  While she shares a lot of details and specifics, it is not too technical to read in the mountains on a snowy afternoon.  She speaks clearly in layman's terms in such a way to educate the parent with a new diagnosis but not to overwhelm or confuse.

Woven throughout the book are anecdotes of life with Rachel, Henry and his big brother Noah.  And this is probably my favorite part.  Not only does Henry Adams look an awful lot like my Henry, but he seems like someone I would like to know.  As different as Rachel and I seem, it is through the stories of her life with Henry, such as her persistence in making him a gluten free cake, that I am reminded we are both mothers with the same hopes and dreams for our children.  

Congratulation, Rachel, on writing the first book about life with Down Syndrome that is everything I hoped it would be.  Part memoir, part instruction manual, and part encyclopedia Raising Henry is a great read for anyone who wants to know more about down syndrome, or loves someone with down syndrome, or loves to read a memoir or just wants to gawk at the beautiful baby on the cover.

March 12, 2014

Update on Madison

Thank you to everyone who has been praying for Madison!

After many delays Madison came  out of surgery around 4:00.  Overall the surgeon was happy with the result.  As best as I understand it because of the amount of aortic tissue around the muscle they were not able to remove as much as they had planned.  Madison lost a lot of blood and has been on constant transfusions since the surgery.  Because of the risk of infection they decided to close her chest knowing they may have to open her up again tomorrow morning to deal with the bleeding.  As of the last update she continues to be on transfusions with the thought they may need to go back in as soon as tonight.  This little one is really struggling but she is fighting.  Even through all that she is resisting the sedation medications.  Please continue to pray.  You can get updates at Her Life Worth Living.

P.S. If anyone would like to send cards or notes to Madison or her family feel free to email me: artschilipepper@gmail.com

Madison's Story

Today I have asked my friend Christina to share the amazing story of Madison with you.  By God's grace and divine intervention we met Christina when Addison was diagnosed with Down Syndrome.  She was an encouragement to our family in the early days when we could hardly see through the dust of a difficult pregnancy, a diagnosis and lots of negative prognosis.  It has been our privilege to come to know this family in the last year and to walk the journey of Down Syndrome together.  Tomorrow, Wednesday March 12th, Madison will be admitted to Children's Hospital for her third open heart surgery.  The risks are very high for this precious one but I believe in God's will Madison will continue to thrive and live a long and full life.  Please keep her in your prayers as she has surgery and begins the long road to recovery.  You can follow her continuing story at Christina's Blog A Life Worth Living
When I was 13 weeks pregnant with Madison, she was diagnosed with Down syndrome. We had gone for the standard prenatal testing the week before and found out there was an elevated risk our baby had a chromosomal condition.  We made the decision to have a Chorionic Villus Sampling (CVS) done to be sure. When we received the diagnosis, the doctor told us that “this was something that could be easily taken care of, at a Planned Parenthood, this early in the pregnancy and we could go on to have other children.” We were also told most women choose to terminate the pregnancy when a Down syndrome diagnosis is confirmed. He proceeded to tell us babies with Down syndrome often have serious heart defects and because we were a young couple with another child to think about, the financial expenses might be more than we were prepared to handle. By the end of our conversation I felt selfish for wanting my daughter. Luckily this little life growing inside of me had already stolen my heart and we were determined to do everything we could to offer both of our children the best life we could. We switched doctors and continued the pregnancy.

We had never known anyone with Down syndrome at this point in our lives and we didn’t know what lay ahead for us. The words of that doctor still hurt to this day. My daughter’s life is not something that could have been “easily taken care of in a Planned Parenthood.” Having an extra chromosome is not a reason to abort a child, but so many mothers receive the same information and they give into the pressure to end their child’s life. I am thankful every day we did not listen to that doctor. I am so thankful we knew our daughter’s life is worth living.

Truth be told, we wanted her, just as she was and we knew together as a family we would make our way through any challenge. We had our 20 week ultrasound on my birthday, a day I will never forget. By this point in my pregnancy I was enjoying the strong kicks from my sweet girl and I was sure going into this sonogram they would find a healthy baby girl. However, because of the high risk of heart defects in children with Down syndrome, they brought in a cardiologist to check her heart. After what felt like hours and a million sonogram pictures later, the cardiologist informed us that our daughter has two large holes between the upper and lower chambers of her heart, also known as an AV Canal defect. He informed us this would require surgery at around 3 months of life to close the holes, but she would go on to lead a typical life. Honestly I was devastated to think of my daughter undergoing open heart surgery at 3 months of age, but I believed this would “fix” everything. When Madison was born in August 2012, all 7lbs and 13oz, we could not be more in love. She was perfect! Her fuzzy little head and big blue eyes captivated us.

However, we barely had the chance to take in our new baby girl before things started to go downhill.  Before we knew it she was in a helicopter being flown to Children’s Hospital in D.C. We later found out Madison was born with three heart defects and would need surgery right away. Madison had also been born with a narrowing in her aorta which needed to be repaired within days of her birth, and a small lower left ventricle that was causing her heart to work much harder than it should.  On her 8th day, Madison underwent heart surgery.  They repaired the narrowing in her aorta and placed a Pulmonary Artery Band to try to lessen the work load on her heart, until she would have her next surgery. I remember holding Madison early that morning before surgery and I will admit I cried as I held her. I wanted to take my beautiful little baby girl and run away, I wanted to go back to when I was pregnant and I was pregnant and I could protect her and I felt her moving at every moment and knew that she was okay, but I knew that this was where she needed to be at this time. Madison made it through her surgery and was making small strides every day to recovery. 

Eventually it was time to start feedings again. As a mother who adores the relationship between a nursing child and mother, I was elated, but in the hospital things are not as natural. Especially when you have a child with a heart condition who often burns more calories than they take in from a feeding. The doctors needed to be able to measure her intake which meant I was only the supplier. However, I would do anything for my kids, so I pumped and they attempted to offer Madison feedings. Madison never really took to the bottle and, as the days went on, the small amount she was taking in, she wasn’t able to keep down. They decided to do an xray with contrast solution, and they discovered Madison also had a Duodenal Web in her intestines. This means there is basically an area in her intestines where a web or blockage, that should have gone away after she was born, stays in place and causes a blockage that prevents food from passing through and this was causing her to vomit. This condition will not correct itself and they would have to surgically cut out and bypass this blockage. Her second surgery took place exactly 5 days after the first. 
Following this surgery Madison started to make better progress with eating and she became an excellent nurser. We went home for the first time as a family of four when Madison was a month old. Life at home was amazing and our family easily adjusted. Our son loves his sister and wants to be sure she is always happy, and she adores him and watches him as he plays. Watching them together makes my heart full. We had a scheduled follow up visit one week after her discharge. Madison seemed so well and I never expected to hear otherwise, but an echocardiogram of her heart revealed she had an effusion, or extra fluid, surrounding her heart. They were also concerned with the fact she had lost some weight in the week since she was home. They told me because of these two issues she would be admitted that day.

The news hit me like a ton of bricks to my chest. I was living this dream at home. I looked at her and she looked perfect, but now she was again struggling. This hospital stay lasted another month and we struggled with her inability to gain weight for most of the admission. In the end, the only way we were going to make it home was to have a Gastrostomy tube, or G- tube, surgically placed into her abdomen so I could provide her with additional calories through breast milk she did not have to work for. This surgery went well and eventually we were home again. We had a lot of follow up visits with various specialists in the months following, but I didn’t mind this at all for the tradeoff of being home as a family.

Life again was wonderful and Madison began making huge strides in her development. She started physical therapy and education, and she was really changing and growing every day. Madison has an amazing ability to make people fall in love with her. People have told me how she leaves a lasting impression on anyone she meets. Madison is the perfect addition to our family. This time at home was bittersweet because we knew Madison would be preparing for another big open heart surgery following the winter holidays. We enjoyed Madison’s first Thanksgiving and Christmas together at home as a family and we did everything in our power to make it special.

In January 2013 Madison returned to Children’s for her second heart surgery. There was a lot of discussion on how to approach her case. In the end they concluded the left side of her heart was not large enough to function properly, so instead of patching the holes they chose to do a Glenn, which is a common surgery for children with HLHS. With a Glenn, a child basically has half of a functioning heart, where blood flows passively from the brain down to the lungs and the heart pumps blood to the body. In the operating room Madison lost a lot of blood and struggled with her oxygen levels. She was not doing well at all and the surgeon decided to leave her chest open for a few days in case they needed to go back in quickly. Her chest stayed open for two whole days following surgery. Seeing your child with an open chest and seeing their tiny heart thumping, changes you as a parent. Life with Madison is precious and every day is a miracle, I have learned to treat it as such. For one week following surgery Madison remained medically paralyzed and sedated with a breathing tube and a machine that breathed for her. She was dependent on those machines for that week to keep her going. We sat by Madison’s bedside talking to her and letting her know how much we love her for that entire week as she lay there unresponsive. I remember her brother Parker sitting on a tall stool next to her bed reading to her. He didn’t mind she didn’t respond, he was just loving his sister the best way he knew how. I will forever cherish that moment and the beauty in their sibling bond.

I remember during this time Madison came out of sedation unexpectedly for a moment. She was motionless, but she looked right into my eyes and I felt like she was looking for strength and telling me she loved me. They came in to sedate her, but I asked if I could have a few moments, as long as she was comfortable. They agreed and I was able to talk to her for almost ten minutes before her blood pressure started to rise and the nurse gave her another dose of sedation medication. After an emotional week Madison was slowly allowed to wake up and lines and tubes were removed one by one each day. One thing I learned through all of this is children with Down syndrome have a higher tolerance for sedation and pain medication and it takes more to keep them comfortable. Because of this and the length of time Madison needed to remain sedated for her body to heal, she became addicted to the pain medications. Seeing your 5 month old baby go through withdrawal symptoms is possibly one of the most difficult things to watch. I remember waking up from a light sleep at around 3am because Madison was vomiting from the withdrawal and she still had her breathing tube. Doctors and nurses rushed into the room and they had to remove the tube for fear she would aspirate. This was by far one of the most emotional moments of my life.

Madison continued to struggle with her oxygen level throughout this hospital admission following surgery, but eventually she was discharged to home once more. Follow up appointments went as expected and the plan was for her to have the next part of the surgical series, which would be the Fontan, at around 18 months – 2 years of age. Unfortunately during a routine echo a blood clot was discovered near her heart. The blood clot was attached, but swinging back and forth with each pump of blood and it was at risk for breaking off and going to the lungs, which would cause difficulty breathing, or to the brain, which could result in a stroke. We were sent to a Hematologist who started Madison on blood thinner injections. She was admitted to the hospital briefly to get her levels to a therapeutic level and the plan was to go home and continue injections twice daily for 6 weeks. I remember first learning I would have to do the injections and feeling awful about the idea of causing her pain twice a day for 6 weeks. However, I would do anything for my daughter’s health and so 84 needles later we followed up with the Hematologist, and to our dismay the size of the clot had not changed. We were hoping all along it would shrink, but it allowed them to conclude the clot was old and most likely the result of a previous surgery. We stopped the injections and planned for the blood clot to be removed with the next surgery.
Addison and Madison
Madison celebrated her first birthday in August 2013 surrounded by friends and family. We went on to participate as team Madison’s Marcher’s in our first Buddy Walk with our Down syndrome advocacy group, F.R.I.E.N.D.S. in September 2013. Madison grew into this wonderful personality who had proven all along she was determined to live this life her way. She has fought very hard for her life and she has taught us strength we never thought we would come to know. As Madison’s first birthday came and went we talked about our wishes and dreams for her and her future. I wish for her that she has the opportunity to live a long fulfilling life. Thanks to the wonderful doctors and nurses at Children’s our daughter has a fighting chance at a longer life. I hope she is happy and doesn’t face the cruelness of our society. I want to create a culture where people can see she is just like any other girl. When people look at our daughter we hope they see Madison, and not a little girl with Down syndrome, because her extra chromosome does not define her, it adds to her pizazz. I want to open doors that allow her to dream and to pursue those dreams freely without judgment. I want her to live this life she has fought so hard for, to the fullest of her ability.

As we prepared for the next surgery Madison had a cardiac catheterization in February 2014. During the Cath they discovered a narrowing in her aortic valve needed to be ballooned and eventually she will have a stent put in to the area to keep it open as her body grows. They also discovered muscle had grown under her aortic valve due to higher pressure in the lower portion of her heart. This muscle is not supposed to be there and needs to be removed during her next surgery. It does not come without risk though. If there is conductive tissue down in the muscle and that is disrupted during surgery, which is very possible, then it may throw off the rhythm of her heart and require a pacemaker. The original plan was to remove the muscle with the Fontan, but following further discussion, they have decided that this would be too much risk for Madison. Instead she will have surgery as planned in March 2014 to remove the muscle and repair the area under the aortic valve and she will have her Fontan surgery approximately one year later. While no one wants to see her face another open heart surgery, this IS the right decision for her. We would never want her to be put at any risk greater than what she can handle.

Our daughter has spent a large part of her first 18 months fighting for her life, and that fight will continue, but there is one thing that I have never been more sure of; Madison’s life is worth living! We knew that long before she was born and every day she proves it to the world. We will never give up fighting for Madison. Our journey has not been easy, but it has been worth it. Our daughter is happy and thriving and she brings so much joy to our lives and those around us every day. She is strong and fights through every surgery because she has the strongest will to live and to be a part of our family. She is smart and observant to the world around her. My son and daughter are inseparable and they adore one another. He isn’t suffering at all by having a sister with Down syndrome and if anything it will make him a more loving and patient person. We have met so many other wonderful families who also have a child with Down syndrome, who have become a part of our extended family. We are so grateful for the people who have stayed by our sides through all of this and loved our daughter for exactly who she is. Our lives are richer because she is a part of our family. Our daughter is the daughter I always dreamed of.