Silence is GOLDEN

Being a mother to a special little boy has been nothing short of a blessing. Although it has caused lots of heartache and disappointment, it also has renewed my faith that our God is a God of miracles and that His purpose for our life is grand. Now although I understand this, it was not something I needed to hear daily from people that were not going through or had gone through my circumstance or one similar.  So I have thought about it for a week or so debating on if I should even post, but I feel like some people need to learn when silence is golden. I know people mean well and they want to give their support and encouragement, but sometimes it does not come across that way.  Always think before you speak. These are all things that have been said to me. So here are things you NEVER say to a parent of a Congenital Heart Defect child…..

 

1.      “It is God’s plan.” Although yes, I am a firm believer that God has a plan and purpose for our lives and He puts us through certain situations in order to guide us to His perfect plan for our life; it is not something you EVER say to a parent with a CHD child. As a CHD parent is watching their child in pain with tubes and wires coming from every part of their body the last thing they want to hear from someone that has never experienced that kind of heartache is, “Well it is God’s plan.” Trust me it makes you want to hit someone. Although yes, in the back of our mind we know that God is in control, it doesn’t mean that it is any easier watching our child suffer.  When we found out that Christian needed a heart transplant I hated God. I hated Him for making my husband and I experience such grief and for not performing a complete miracle on Christian’s heart.  God never left me though. He took my hate and remained by my side until I called out to Him. So allow the parent to understand that God has a purpose for the trial they are going through without putting in your 2 cents.

 

2.      “Well it could be worse.” I mean seriously?! Why would you say this especially if you have a perfectly healthy child?  I do understand yes, my circumstance could be worse, it can always be worse, but don’t say that to me.  We were talking about funeral arrangements when we found out about Christian needing a transplant, now can you honestly tell me your first thought would be oh well it could be worse, NO!

 

3.      “Well at least you don’t have to go through the newborn stage.” Um yes, because I would much rather have my child’s chest ripped open then have to deal with the first tar like poop, sleepless nights, crying etc. I think any of my CHD parents can agree we would rather have our child not sleep through the night than have to undergo open heart surgery.

 

4.      “God only gives you what you can handle.” This statement is 100% false. We are given circumstances all the time that we as humans are not capable of handling by ourselves. God gives us trial so that we call out to Him for his guidance and help.  I would not have survived emotionally or mentally if I had not sought after God and asked for His peace.

 

5.      “Are you worried you might have another child with a defect?” Did you know that the defect Christian has, HLHS, has no links to what causes it.  The heart’s cells just stop forming and developing.  They have no idea what causes it.  So the chance of you having a child with a CHD is the same chance as us having another child with a CHD.  This also implies that my child is something of a burden and why would we put ourselves through it again. My child has made me love deeper and more fully than I ever thought I could for another person. It is not that I think my love is stronger for my child then your love is for your healthy child; it is that I have literally had to fight for my child’s life so it is a different kind of love. Although I pray we have healthy children because of the suffering Christian has endured in just the short 8 months of life, if God chooses to give us another child with a CHD we will fight for that child as well.

 

6.      “Will he be normal?” Although he will have challenges that children with whole hearts won’t he is normal. Yes we have precautions that we will need to take and that have been taken to ensure the safety of Christian, but he isn’t the plague. He will make his own limitations.  There is a girl that I have been following that is in her 20’s with HLHS and she ran track, did gymnastics, skis, and goes on roller coasters. She sets her own limitations and pushes maybe a bit more than some parent’s would allow their child with CHD, but I want to encourage Christian that he can do anything he sets his mind to like Megan has.  Yes, Christian will always be followed by a cardiologist, but that doesn’t mean he cannot live a normal life.

 

7.      “I wouldn’t have put myself through what you are going through.” You are implying I should have aborted my child? What makes my child’s life any less valuable than your healthy child’s life? We found out about Christian’s heart at 37 weeks, however, I would not have changed my mind to have him even if we would have found out earlier.  I feel sorry for you that you do not value human life or have trust in God. I have experienced the deepest heartache possible, but I have also experienced the most joy. When you say this you imply that a CHD child’s life is not precious and that you are not willing to fight for it. It is ignorant and very hurtful to say this to a CHD parent.

 

8.      “I’m so sorry.” My child has half a heart, he didn’t die. I never really knew how to respond when someone would offer these words.  I understand you are sorry that we have to endure the struggle that we do, but it does come across more negative than positive. Instead say you are there for whatever is needed. Offer help instead of offering your condolences.

 

9.      “Could he die?” This is very insensitive. More children die from CHDs than all childhood cancers combined. For my husband and I we enjoy each moment we have with Christian and do not think about the possibilities. I do not look up statistics. If I did I would not enjoy my child instead I would be worried about him constantly. Anybody can die at any point. We are not promised tomorrow; NONE of us are.

 

10.  “Could it have been prevented?” This is implying this was in some way my fault for my son’s condition. Like I stated before Christian’s specific heart defect has not been linked to anything, so it was the same odds for me to have an HLHS baby as it is yours. Putting guilt on parents like that is completely unnecessary. They have enough on their plate and probably already are thinking of everything they did during the pregnancy so they don’t need you to point fingers.

 

I know some people will find this post insensitive, but I find these things said to me very insensitive. Think before you speak and put yourself in the parent’s shoes. If you are not sure what to say, better just not to say anything. Remember sometimes the best thing to say is nothing at all. SILENCE IS GOLDEN.

 

Update on Christian: He is eating some food. I have been trying different food so that we can hopefully get his tube out soon.  He is not a fan of bottles, but we are receiving therapy now so hopefully it will improve.  He loves mini pancakes. He is also receiving physical therapy in order to catch him up on his movement development. We are just enjoying him and taking every moment in. He is such a happy little boy and we love him dearly. He truly is a little blessing!