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!
