I don't know if it is really possible to express how different and how much our relationships with just about everyone has changed since almost 4 years ago the CHD monster came into our life . I could say it was like a storm, but with storms you usually have lighting and thunder first, we had no warning.
|Zeb being taken to lifeflight at 4 wks old|
You think that your life is pretty much set and mapped out for you and you know who your family really is, your close friends are and you either have an established faith in God or you don't , and you know the man you are married to, until something happens and everything you have known to be true is sort of hazy. You really don't know anymore, and you have to search your soul and find it again. I can say this is what happened to us.
I will say that I have been very BLESSED to have many friends. I cannot count on my hands and feet the number of friends that I actually have. I am very thankful. However we all know that there are friends and then there true friends, these I can count on one hand. The kind that if you were jumping off a bridge, they would jump with you to make sure you didn't get hurt as you fell. In a world when bad things happen and people don't know how to react you find out who your real true friends are. My true friends never left my side, they were in the PICU with me when the Dr. gave us the devastating diagnosis, taking control of my girls, getting them food, taking over when I could not stand. They traveled hours at the drop of the hat to meet us and wait with us and pray for our son, every time. Every single Dr. Appt for 3 1/2 years they have text me waiting to find out what the report is, ready to run to my rescue if I needed them. When my son was taken back for open heart surgery, they all surrounded me in the waiting room praying. This I can say is a true friend and these relationships did not change, in fact I think that they all grew closer. They view my children like there own. I can say that I felt love that could only come from God. These relationships help to make me a stronger person. I am strong because I know that when I am not they will hold me up. This is an amazing gift, and I know it is from God.
Now of course, It is not always sunshine and roses when it comes to other friends. You have people who don't understand you anymore and think you overreact to everything. They see my very active almost 4 year old and he looks perfectly healthy and they think, she is just crazy. I have been called that many many times. People do not understand why my husband posts a big sign on our door warning you that if you are sick, you can't come in to our house. They don't understand why I have germ gel in every room, my car, my purse. They don't understand that if my son is having an off day or he just doesn't act right I think it is his heart. I sometimes stay home from events, church, etc. if I know the flu or some other illness has been going around. If he runs a fever, I don't wait it out, I go to the doctor right away. They think that I am crazy, but they have never lived the nightmare of heart failure and not know if your child will live or die. Its also hard for them to understand why you are so protective and want let him stay with just anyone. I am not a mother who just leaves my children anyways but now I am worse. I will admit that CHD rocked my world and yes I am changed completely but everything I do is for my son and my girls. I will protect them. God gave them to me as a gift and I will sacrifice for them whatever the cost. So go ahead call me crazy...I CAN TAKE IT!! I have lived through worse. It is hard to admit and sad but I have had some of these attitudes from family too.
Let me begin with saying that I do have an amazing supporting family but we all know that family is not perfect either and neither am I. Our family has embraced us and stood by our side, caring for my children, helping out any way that they can and I am BLESSED by this. However, some relationships have changed some for the good and some not. But I take this atttitude, I will choose to LOVE. If they choose to not understand me or think I am crazy, then so be it. I have been extremely loved and I have been hurt by family during this 4 years but CHD changes you and some things just don't matter anymore. I will not argue over the little things or waste time that I have with my children worrying about something that I cannot change. I will be who I am suspose to be in Christ and this is why I will not elaborate on the hurts because in the grand scheme of things, its ok. God will work it out.
As I said GOD will work it out. The relationship that has really changed is my relationship with God. I have always been a christian and I have always loved God. Until CHD I actually thought I knew what it meant to "Walk In Faith" . I have lived with almost 9 years of infertility and prayed for God to give us children, right? WRONG!!! You do not know what it means to Trust in God until you see your child lying on a hospital bed and there is nothing you can do. I have never felt so helpless in my life and I knew that nothing I said or did could change that. It was totally up to God. You learn a whole new Faith. I knew that I had to trust God or go completely mad. I am not saying that I am super human and don't worry because I do, I worry way to much. I am just saying that I now have a complete understanding of trusting God. When you have nothing there is still hope in God. My prayer is that people will see God in me and that I am on this journey to help others and that his Glory will shine through. Then of course you have the people who don't understand this and think that you are again CRAZY....Look at all you have gone through and you still Praise Him.. Well YES I DO!! I hold a miracle in my arms today because of his Grace. (Really I have had this said to me.)
I guess the relationships that have changed the most would be my immediate family relationships, my husband and my children. I have seen a man that I have been married to for 20 years, yet I have never met until now. I have seen 2 of the bravest and strongest big sisters in my sweet girls. Its hard to say when it our family changed but it has. My husband and I have always been close, but CHD has brought us closer. We are united together in that whatever we have to do to take care of our son and our family we will do it. Together. I told you before that I am a worrier. Some days I just can't seem to get it all together, and he will just know that I need him to say its ok. He will just take over. I have seen strength in him and love in him that I have never seen before and I have seen him broken. We have leaned on each other in that if one of us moves we both will fall. There are days that we have arguements because I overreact but he keeps me grounded. We know that we are on the same team at the end of the day and that we don't ever quit the team. CHD has made us strong and has given us a renewed commitment. We might not always say it but it is there stronger than ever.
|Me and My husband Sonny of 20 years|
Our daughters, they were so young when CHD happened to our lives. Preslee was only 6 and Kerrigan was only 4. They have seen more in their young lives than most. They have seen things, ugly scary things that young children shouldn't have to see or endure. They have experienced trauma. There was no preparing them and sitting down and having a talk with them. They lived it right along with us. Preslee at 6 years old had to be her brother's hero in a panicked ride to the Dr. and monitor her brother's breathing. I will say they are way beyond their years, I regret this. I wish I could have sheltered them but it was not to be. We did not choose this, it just was the plan that was laid before us. However today, they know that life is precious, they know that life can change at any minute, they are not afraid to ask the hard questions about their brother's health. They are fighters right along with us and they know that it is not in our hands but God's hands. They have had to miss alot of things, (the first time Zeb was sick we completely missed Easter with them) and have been shuffled around alot because of their brother's health but they are such troopers, they take it and they keep smiling and they are not jealous, they love Zeb as much as we do. I always say he has 3 Mommies. We try to make special time with them so they feel special also. It has been very hard to be away from them when Zeb has been hospitalized. We don't want them to ever feel that they are not as important to us. Having one child with a chronic illness is hard on the other children, bottom line, but our sweet girls, they make it look easy. So yes our relationship has really changed we are more united as a family unit and these girls know every day how special they are to us and they are their brother's biggest cheerleaders. We are very PROUD of them.
|Kerrigan & Preslee - Our sweet daughters|
This has been a really difficult subject to talk about and I think I have covered most of the relationships that have changed and been affected. I can say that even though some are good and some are bad, every thing has a purpose and even though somethings I will never understand I just keep going forward and hope that someone will be BLESSED by our journey and love their children more, and treasure their family more, and see God for who he really is They can call me CRAZY if they want..I really don't care! If only for HIS Glory I will go!!