This is the letter my girls would have written to me before they were born to explain their GERD. I have seen other parents write something similar. I think it shows everyone going through the trials of a "reflux baby" exactly how hard it can be. I hope to those of you in the middle of it that it gives you some encouragement that there is a "light at the end of the tunnel". For family members or friends I hope that you will take this letter and use it as a tool to help anyone you know dealing with a "reflux baby".
I have GERD.
You will hear screaming, oh the constant screaming. Gut wrenching, cries... You will think it is quite possible someone in your neighborhood will call for help. You almost wish that they would... because you are sure something has to be wrong with me! You will sit on the floor next to my crib when you are too tired to stand anymore and you will cry with me. Daddy will join you in tears, something he rarely does. You will pray over your me like you have never prayed in your life.
You will attempt to feed me. You will be told that this should come naturally to a mom. I will refuse to eat. Refuse to the extent that I will nearly starve to death. You will work with the doctors to get me to drink a higher calorie formula. You will spend hours using an eyedropper to get extra calories into me. You will drag me to numerous doctors appointments and weight checks. You will strive for even one ounce weight gains. You will wince as you look at my rib cage. Your mother will tell you later that, during this time, she thought I was going to die.
When you think you can take no more I will stop breathing. They will tell you it was from aspirating on formula. You will not sleep for months, unless Daddy is watching me. You will question why God would make it so hard for you to have me and then make me so sick. You will feel guilty for questioning God and will be thankful I am here. You will try not to live in fear of what could have happened to me. You will watch me sleep every night, taking comfort in my rhythmic breaths.
It will take you hours to get me ready to do anything. You will have to schedule around my feedings, holding me upright and my numerous medication doses. You will start putting a towel in my car seat and one on my lap. You will wonder if you can teach a 6 week old to hurl into a bucket. You will carry bags of extra clothing, medicine, special snacks and wipes for me, with even more left in the car for any contingency.
You will constantly wonder what you are doing wrong. No one you know will have a baby who behaves like me.
You will find out who your real friends are... You will know them by the fact that they know almost as much about my GERD as you do. You will also find that not everyone is supportive and many will never understand. You will want to explain it to them but you will not have slept in so long that you won't have the energy. You will be given the sigh , finger wag or an eye roll for missing family functions or "forsaking the assembly". You will decide it isn't worth doing anything with those people when you barely have the energy for your "life" with me. You will wonder what happened to compassion but you will know in your heart those who really care about me.
You will feel guilty and self indulgent for feeling sorry for yourself and for me when other people are dealing with much worse. You will silently pursue more appointments, perhaps a specialist.
You will finally, with the help of my doctors, find the right combination of medicines for me and I will begin to thrive. You will see my real personality and a long overdue smile. You will see the light at the end of the tunnel. You will help me through flare ups and will surround yourself with people who will support you. You will find a church family who will pray for me as often as you do.
You will have an appreciation for my life that only comes from dealing with the rough times. You will know that every day of my life is a gift from God. You will have compassion for people who are in pain and yet "look fine". You will have an extreme amount of compassion for sick children.
You will talk with new moms who are dealing with GERD. You will not want them to feel alone like you did. You will not want them to deal with this disease in an unsupportive environment. You will tell them all your mistakes and everything that worked for me. You will tell them you felt the same way because you did. You will pray for their child with them. When I am older you will ask me to pray for the children with GERD too.
You will feel blessed.
Your GERD baby