Here's my Every Heart Has a Story - How CHD Affects your Relationships

This blog event is going to be intense because anytime you have a sick child, relationships are going to change.  They seem to get stronger in the beginning, but slowly...over time they change.  I am going to start with the relationship that changed the most...that with my husband.  We had not been through much in our relationship...a couple of babies and buying and remodeling a house together.  It is truly amazing how much we have grown in the past year.  We have cried, yelled, smiled, and laughed.  We have grown together and have learned so much about each other and our relationship.  My husband cried when each of our kids were born...he couldn't stop crying when Hope was born.  He is my rock...whenever I am scared, he is there for me.  He has had to calm me down many times...some have been in the hospital when I had very little sleep and almost went overboard talking to a nurse.  I remember the day we were told that the doctors at the first hospital would not do surgery and they thought Hope did not have much of a chance of living.  We left shortly after they told us to come home and spend time with each other deciding what we should do.  We should never have gotten in the car and I don't know how we made it home between the tears that were shed in the car.  I realized at that moment that my husband and I were on the same page...we would do anything to help Hope live.

You can see the tears in his eyes...this is my favorite picture of when Hope was born.

My friendships started to change when I had my first son, Jerry.  Prior to that, most of my friends were single with no kids.  After Jerry was born, many of those friendships changed, so when Hope was born...it was no surprise that the friendships that remained would change as well.  I don't mind so much anymore because I have made some wonderful friends within the heart community.  We all share so many thoughts, experiences, and emotions that it is natural to become friends. 


Family relationships have grown stronger.  My family has always been pretty close and with Hope we are closer.  Everyone went out of their way to help when Hope was in the hospital.  My mom took time off work and my sister was there whenever we needed anything.  Jerry's sister lives close to the Clinic and it was perfect to drop the boys at her house on our way.  Everyone was supportive when Hope came home after the Norwood and totally understood that she could not get sick.  It was hard for everyone, but we got through with only one cold.  Now that Hope has had her Glenn, we feel a little more comfortable.  I still won't taker her around family when they are sick, but we do go out and she has had her share of colds.  Hope still has her Fontan and I know our families will be there for us.  It is harder now because she is just like any other little one and doesn't look sick at all.  I think many people forget how sick her heart is and how bad it is if she gets really sick. 

Jerry's mom and dad

My brother, John...all 6 foot 7 inches!

Mary - my stepmom

My mom and her sister...my Aunt Betty

My mom and her brother...my Uncle Mike

My sister...and her family went out of their way to help us.  They put thousands of miles on their car, always made sure they were available, and fed us when we didn't have time to eat.

Jerry's sister, Gerileah and her son Daniel

Jerry's sister, Danielle and her husband, Greg

My mom...she is the best.  She took a lot of time off work to make sure someone was always with Hope and to make sure the boys were taken care of as well.

Now for the relationship that I think has changed the most...my relationship with my kids.  I never thought about losing any of my children...it just doesn't happen.  Then I had Hope and I realized how precious life really is.  I realize there are no guarantees in life.  It is a harsh reality, but one that makes all relationships grow stronger.  My boys have been through a lot.  I took Jerry out of preschool last year when Hope was between her Norwood and Glenn.  It was hard for everyone, but the boys went through the most.  They were shuffled between family members and they didn't see much of mom or dad for the first 6 weeks after Hope was born.  The Glenn was a little easier...only 6 days, but still difficult because Jerry and I were at the hospital the whole time.  More shuffling and schedule changes and just not seeing us very often.  They have lived with therapists and nurses visiting Hope all the time.  They have lived with feeding tubes and medicine for Hope...a lot of attention on one little girl.  I try and spend time with each of my kids by themselves so they feel like they have my undivided attention.  I know it doesn't fully make up for the attention that Hope gets, but I hope it helps a little. 

My beautiful step-daughter, Destiny.

My oldest, Jerry

My middle child, Paul...we have a lot in common

My beautiful family!

I definitely want to thank Stef for putting this blog event together.  It is great to be able to share our lives with everyone and get to know so many wonderful families.  The best is knowing that we are not alone...in the good times and bad...someone has shared our feelings.