I have been waiting to get an appointment with a genetic doctor in Texas that works closely with my cardiologist there. Dr Suleman (my cardio doc) has been thinking that I have Ehlers Danlos Syndrome and that is what is causing my Pots and stomach issues. Trying to see a specialist usually takes jumping through hoops but not this time. The geneticist worked with me to be able to get in sooner rather than later. Well my friends I am happy to report that she was a VERY sweet lady and she was very empathetic. Now for the not so good news:
I defiantly have a connective tissue disorder but which one? The visit was very in depth. We went through all of my medical history, family medical history, and looked at pictures of my family. She has ruled out all but two connective tissue disorder, Ehlers Danlos Syndrome OR Marfans Syndrome. First thing out of her mouth was, "your children have to see a genetic doctor as soon as possible." That is something NO mother wants to hear. My heart just sank and I felt like it was actually breaking in half. "Oh God, please help me handle this!!!" was all I could hear in my head. The room starts spinning and everything coming out of her mouth was muffled. I thought I was going to throw up. Words were flying out of her like, organ rupture, aortic dissection, no physical contact activities for my boys, retinal detachment, sudden death, life full of constant pain in your joints, passing it down to your children. Guilt, pain, sorrow, fear, suffocation....this is how I was feeling. I GAVE THIS TO MY CHILDREN and they will give it to theirs. I will see my first grandchild in March. Will my oldest son know the guilty feeling of giving his child a life full of pain and fear?
Something happened at the very moment she stopped talking, I heard a faint whisper "Faith my child". I know that sounds crazy but it really happened. Maybe I am mental now, and that's okay if I am, but I believe God put his arms around me and said, "Faith my child". I felt immediate peace. I knew that whatever happened next, I was being carried at that moment by my Heavenly Father. It's a good thing too because I am tired. I am more tired than I have ever been in my whole 38 years. My soul aches for peace and my body aches for healing.
Faith is the only option for me now. The hope of it being "nothing" is gone. The battle will begin in my children's lives now and God will be there with us EVERY step of the way. I might not like what I am going through but I know that God is with me and he hurts because I am hurting. I am forever changed, inside and out.
On the way home from Texas that night a song came on by Kutless called What Faith Can Do. The lyrics of this song spoke to my heart. I have the video of the song in this post so you can listen to it. It is a song full of hope and promise that our God is wonderful and he can do all things. Through faith we will be carried by the strong arms of our Lord and Savior!! Thank you God for giving us the choice to lean on you and be loved by you.
"I will sing of your strength, in the morning I will sing of your love; for you are my fortress, my refuge in times of trouble."