Monday, April 27, 2009


**I have written this post hundreds of times in my head; it always come out different and eventually I decide not to write. I have felt compelled over the last week to sit down and write this post. I have struggled to post it because part of me feels this is not my story to share and as a mother I want to protect my child from the things in this world that may hurt him. However I honestly feel that for some reason I am to share this story. **

If there is one thing I have learned in the last two years since getting pregnant and having a child it is this, don't judge. You never why people make the decisions they do, you never know what goes on behind closed doors and even if you did, you have not walked in their shoes and don't know what decision you would make if you did walk in their shoes. I say this because it is this judgement that I have seen first hand that I want to protect my child from.

Ethan has Hemophilia B. In bare basic terms Ethan's blood has trouble clotting. We have struggled to share this information out a feeling of protection. We want to protect Ethan from the thoughtless comments, the ignorance and the judgment that people pass, often times out of pure ignorance and nothing else. Unfortunately those things exist (and it still hurts, intentional or not) and Chris and I have dealt with them personally. Ethan's condition is genetic and we knew prior to having him that this was a possibility. After much thought and prayer we felt God calling us to have children. Some people don't understand that, and that is ok.

Everyone has a purpose in life and Chris and I feel that Ethan is no different. We feel that this diagnosis is a part of his purpose in life. It is not secret that I had a very complicated pregnancy and medical statistics for my condition tell us that I should have had a late term miscarriage (for those of you new to my blog this has already been covered). Something drew me to go to the hospital that night and something made the neonatologist check one last thing before sending me home. I could have lost him but I did not. That in itself is a miracle. So when he was diagnosed at 2 weeks old I struggled, why was my child born with this? The genetic odds could have gone the other way and they did not. I was not mad, honestly, I knew the odds. I have thought about the possibility of having a child with Hemophilia for as long as I have thought about children. I did the research, I choose a career that would allow me to have good benefits (the meds for this can be expensive) and yet would allow me to be at home with my child a good amount of time. I was open with Chris and his family shortly after we began dating. Chris and I talked, prayed, talked and prayed some more (as you see I can be a little type A). So I honestly was not mad but I struggled to wrap my brain around the idea that Ethan survived this pregnancy and was born with this. Why one miracle and not another?

It took sometime and prayer and long conversations with Chris to come to this conclusion: Ethan is a miracle (as are all children), God made him as he is to be and who am I to put God in a box and say that this is not a miracle because it is not the miracle I define. Contrary to those that believe in prosperity doctrine, God is not punishing me and Chris and Ethan for not believing enough. Everyone has something wrong with them, no one is perfect, so to speak, and God can use that to his glory. The conclusion Chris and I came to is simple, God has a plan for Ethan bigger than me, bigger than Chris and bigger than the Hemophilia and just maybe the Hemophilia will be a catalyst for others to see God in his life. I pray that what ever God's plan is for Ethan that he will be open to this plan as he grows and that God will always be glorified in all of our decisions, and that is a miracle too.


J and C Smith said...

What a heartfelt post. I am so glad you posted it for I had no idea! You have been through so much! But Ethan is a miracle! God has a plan! It is hard for me as I write this to know what to say as we have been through a lot with trying to have children. And our faith has been tested and tried for four long years now. All I can say is that your love is much bigger than any kind of condition that Ethan can have and he is a miracle no matter what! Find your contentment in knowing that Ethan is here with you and did not miscarry and find your strength and hope in God knowing that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28

You and Ethan and Chris are all called according to his purpose and our God is bigger than anything! Let us find strength, hope and faith in each other's trials and blessings!

jesse and susan said...

what an amazing story. i knew some of the details, but not all of them. ethan IS a miracle and all you can do is be thankful for him, as i know you guys are. i have no doubt ethan will grow up to be an amazing man. love the post.

Priscilla said...

Well said my friend!! We both have been through a lot with our pregnancies, and i think that just makes us remember how special our littles ones are! I absolutely love your new pic! it is so precious... you can tell toph i said he looks precious! hahahha

Arizona said...

As a parent of a Hemophiliac I understand this post all too well. If you have question you'd rather ask a parent please don't hesistate to contact me.
You are blessed with such a speacial child.