Saturday, April 7, 2012

Support Not Advice

I came across a great blog this morning through a friend.  The blog is written by Annamarie Saarinen, and the piece I loved and could connect to the most is found below and on her blog which is located here

“One of the great human tragedies of pediatric disease is the loss of friends, family, support systems. Again, no one can understand unless they have been through it. Nearly every day, I hear a heartbreaking story of how a best friend never came to visit the hospital. How parents, brothers, sisters...and yes, even spouses, just bail. Sick infants are not the things of story books and fairy tales. Tubes, wires, monitors, cuts, stitches, blood. Congenital heart disease is an abomination. No child should have it. Period.

But until the day when children suffer disease no more, reach into your soul to BE THERE for those you know going through a traumatic health experience with their child. BE THERE for those you barely know. And BE THERE for those you don't know. Suck. It. Up.”

I am sharing this portion of the blog because we have lost family and friends over this too and our daughter is not even born, but as Annamarie says for every person lost 10 more fill the space – that is so TRUE. To anyone going through this or that knows someone, it is critical that you not assume you understand, it is impossible - as most of us going through it are making our way to that understanding ourselves.

I had lunch with a great friend, Heather, yesterday and she said to me “I don’t have any words that will make this better, there is nothing I can say to take away your pain, but I am here for you”, I told her that was the BEST response ever. As we are not looking for advice or those to say the automated responses because they feel they need to say something. Not having the answers is fine and just letting the person know you will be there is enough. I have come to terms with the fact that people just don’t understand the magnitude of our lives now and that it ok, I need to separate my emotions from what others don’t understand –  but I am always willing to explain it if asked. The worst for me is hearing over and over from others that she will be fine, or that the doctors don’t know, or that maybe this will go away…because unless you know this for a fact and have gone through this, you don’t know. If you know the person is not religious, don’t preach to them as that feels more like an attack.

I will do whatever it takes to give Ryleigh a great life and one that is (unlike mine has been) drama free and no matter the extent I have to go to do it, it will be done. The best advice I can close with is just be there, give support, if the person doesn’t want to talk about it, that is fine but asking if they are ok or if they need anything are fine substitutes for a conversation.  Most of all have some compassion for heart parents and kids and know that it is not personal – unless you make it personal.

Be well all.

Friday, April 6, 2012

Making a Choice

When I was 18 weeks pregnant, we were presented with the possibility that our baby had Dandy Walker Syndrome.

Dandy-Walker syndrome is a brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it. Common features of this syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the cerebellar vermis (the area between the two cerebellar hemispheres, which is important for the coordination of voluntary muscle movements), and cyst formation near the internal base of the skull. The syndrome has an extreme range of severity (Incesu & Khosla, 2003).  

At my 21 week scan they downgraded this as the ventricles were there and of normal size and all of the water works of the brain seemed to be functioning just fine. Ryleigh will have a variant of the syndrome.

Some people with a Dandy Walker variant live their entire lives without any symptoms. Others have it in association with other symptoms, resulting in severe disabilities or even death (Incesu & Khosla, 2003).

However, even with the DWS downgraded they found her heart defect. In all of this, we were presented with many choices but two main ones rang out:

Life or Termination

We did consider both as I believe many parents do -- who want the best quality of life for their baby. It took me a week to get over the guilty I felt for even thinking that abortion was a viable choice when the option was provided, especially when I feel her move and then I see her on u/s yawning and waving. I discussed with my husband how guilty I felt and we cried about it and wondered, are we alone? Do others think about this too?

We chose LIFE for Ryleigh. Knowing that no matter what we are the ones that will love her unconditionally and when they downgraded her DWS to a variant, we were even further confirmed we made the right choice. 

Then we met the Hodge family!  This family has two beautiful girls, one who is 19 and a singer living with a CHD herself (Sairah) and the other who is a 6th grader who has wisdom years beyond her age (Sierra).  While we have met many families along this journey (thus far) who have given us great support, this family has helped us come to peace with our decision.  One of the thoughts I had was, “will my daughter hate me or blame me for choosing her life to be as it may be?” 

This family has given us the peace we needed to know that she WILL love us for choosing life, and despite her Truncus Arteriosus CHD, she will thrive and grow into an amazing woman. Both of the young women in this family are just that, amazing. I wanted to share a piece of writing that Sierra wrote about her sister and the choice of life, she entered into a TROPICANA writing competition – and she was a winning placement.

I think her piece will also help other parents who are faced with the options of finding out this news and being presented with two “life-changing” choices.

Choose Life, My Mom Did

By Sierra Hodge

I am just 12 years old and I am learning about abortion. I really did not know too much about it until recently. I over heard my mom and sister talking about it and they were upset about it. I started asking questions and they explained things to me.
My mom told me that there was a lady who was pregnant and that the doctor told her the baby has a bad heart. She said that of course lots of times when people find out that there is a problem with their baby, the doctor says one option is to abort it. Well I am not sure why a doctor would tell people to do that, but I guess they offer that as a choice. I do not think that's a good choice. Well after reaching out for help from people in the area, she decided at 20 weeks that she was going to have an abortion because the baby was going to have a bad heart. My mom said since she was so far along she had to go to another State because she was 20 weeks pregnant that she was too pregnant so she needed to go to a hospital that could abort a baby so far along into her pregnancy. I thought that was so sad. How can a mommy do that, just because the baby was not perfect. I wondered to myself, am I perfect? Are you perfect? Is anyone perfect? No, so why did she do this?

This is the part I really do not understand. My sister Sairah is 19 years old. She was born with a bad heart. She was not perfect. She has a few medical problems. She has had 6 heart surgeries and 3 spine surgeries. I asked my mom why did she not have an abortion with my sister. She told me that she wanted a baby and that she was willing too take whatever God gave her, even if she was not perfect. She said that a baby was a gift from God no matter what. My mom said that my sister and I are a blessing. Our family knows so many

families that have children with bad hearts or other medical issues. She said that if all these moms had abortions that we would never know how special their children really were. We would never share the fun times, sad times and just getting to know them as a person. My sister has a bad heart, but she is in college and she is a singer. Children are a gift from God and if we get an abortion that we are taking away something that God wanted us to take care of and love.

I read about abortion and I was upset and confused about what I read. It's to be said that if you abort a baby early, then it's only an egg and it's no big deal. I am sorry, but I am not sure who you can say that it's just an egg. It's a person, it's a baby. I found this poem and I thought it was special and makes a good point.

“Dear family & friends,

 I was so excited about what my life in this world would be. I thought about all the things I would like to do like playing with toys, riding a bike, going to the zoo, and having a dog. I wanted to see movies, go to school, make friends and go to the park and the circus. I wanted to celebrate Christmas and receive Jesus. I looked forward to listening to music, dancing, swimming in a pool, playing soccer, and having dolls.

 I am very sad that I never got to do any of these things. My mother did not let me be born. I just don't understand one thing. Why didn't any of you help me? I wish you had. No one heard my crying voice.

From an unborn baby”
In conclusion, choose life, my mom did and I am glad she did. It's because my mom chose to have my sister even though she was not perfect and had a bad heart, I am able to talk about my sister today and tell you how she is my hero and all the fun we have together. Thank you mommy.

Thank you Sierra from the very best parts of my heart for letting us know how this choice will impact our son who is 5 in the best possible way.
With love,

The Walkers

Thursday, April 5, 2012

Anna's Story With CHD

What a great surprise, we were contacted by Holden’s [The Tin Man] family and what wonderful people indeed, they shared a video about a little firecracker of a girl named Anna Sage. Anna has a CHD where she only has a partial heart, but according to this spunky little girl it is all she needs!  I see a lot of Ryleigh in her and I have not even met either one, yet! Smiling. What great hope.  The link to Anna Sage’s video is below.

Thank you Trey and Nicole you are amazing people, with a true miracle, and give us so much encouragement!

To see Anna’s story click the link below:
Anna's Story

With love and hope,
Lee Ann and Craig

Tuesday, April 3, 2012


So we are a few days from being 6 months along, which means in 13-16 weeks she will be here with us!

Here is her progression...(I will add to it for the remaining months)

Love you sweet girl, with every kick you make.

Sunday, April 1, 2012

The Tinman

We have been reading and chatting with other parents about this heart defect Ryleigh has and all have shared some really great advice and support.

Here is a link to a video of the journey of another family whose son has a heart defect that required open heart surgery, while it is a different heart defect than Ryleigh it provides some of the journey from finding out at 20 weeks to after his 1st surgery.

Click the link below and the video will open from Youtube.

The Tinman Video - Click here to watch video