At 20 weeks we found out that our baby had some markers for Down Syndrome. However, our OB said that it was really nothing to worry about because even though I was in the high category, there was still a good CHANCE that I would have a perfectly healthy baby. My husband and I prayed and we got over the initial shock of have a different child. We had to face what we had thought would be different. After a day or so, we were filled with joy. We could not wait to meet this special blessing, no matter what they looked like or were labeled with. We were just excited to have another child.
It was not until I was about 33 weeks along that we discovered there were some medical issues. They were able to tell us that she had a hole in her heart and the other complication they would not be able to full diagnosis until she arrived. We just prayed and knew that it would be OK. We held out hope and we were very positive about everything.
However, the medical side of things really did not hit me until we were in the midst of them. I never realized that the medical field was so "experimental." With my other children they had this or that and they were put on an antibiotic. Even when Ellen had her hand surgery, we were told the most devastating news first, and then when we pressed on, it really was nothing at all. It seemed so simple. There was a test or a surgery or a procedure or a drug to help all of these things.
But what happens when you child has something that they are not familiar with, or there are no good answers for what your child has? What do you do? I thought the medical field was a science and had an answer to things. I realize that there are not cures for everything, but I thought that there were a lot more answers than what they do have. I thought that we would have surgery and things would be done.
I was very mistaken. That is not how the field of medicine works. So I went into this clueless, not even thinking that my child could have medical complications. Then I thought that the medical field was a little more black and white. Oh, that has proven to add to this wild ride. I was terrible mistaken. It seems as though every decision is experimental and every doctor has a different opinion. The medical books are written for some kid who I don't think exists, because my child never once followed anything the books said.
It can leave a family, a parent, a sister, a brother, a grandma, a grandpa, an aunt, an uncle very frustrated. There seems to always be more questions than answers. There never seems to be a cut and dry answer. It is a difficult road to travel. You are constantly trying things, things are not working. This is how you do the two steps forward three steps back dance.
I wish someone would have mentioned this to me ahead of time or I would have realized more. It is frustrating. It is a frustrating life to live. Sometimes too, there is NEVER an answer for your child. You must constantly live in the ups and downs. You must never really get a good answer for your child's condition. And sometimes you must face that there is nothing that they can do. You must face the reality that your child may have been chosen not to make it in life. Not to enjoy their first or second Birthday, never to come out of the hospital.
Those are harsh realities, but ones that a family who has a child who has a medical condition must endure. As hard as those are, there are so many blessings along the way. They are blessings that we never could have imagined. Blessings that we could have never dreamed of. But they are HUGE blessings.
While the road of a medical journey is long, hard, scary, frustrating and everything else, there are many wonderful things along the way. When you are able to get to a place to be thankful and realize this, it makes traveling the journey all that much better. We have made some awesome friendships, ones that we would have NEVER made had it not been for this journey. We have had some amazing opportunities, again ones that we would have NEVER had had it not been on this journey. We have also found strength like we have NEVER seen before. And I can't tell you what this journey has done for our FAITH. It is amazing.
While I would take the pain away from my daughter in a heartbeat, I would never change one thing about her. Every moment, experience, set back, trial, hurdle, mountain top has made her her. She has been shaped and formed and molded by every moment. Praise God for that.
I hope I can write this to encourage others who are on this medical journey. It is not for many people, only a select few can experience and understand the true hurts and the true joys. However, it is one that many people can learn from. And just because your child was born healthy never ensures you will not be on this path at some point. God holds are future and we do not know what the next moment will bring.
While at times on the journey it sucks and it is hard, keep going. Around the next corner there is something totally unthinkable. Take each moment for what it is and just enjoy it. I pray for all of the families that continue to fight and battle this tough journey. They bring so much joy and inspiration to me. These kids are simply amazing. I encourage you, if you don't have a child who is affected by a medical journey, get to know one. They will change you forever.
The greatest lesson that I have learned, is years of medical school does not make someone know my child better than me. I don't have the medical knowledge, but I have the bond with my child. No one can take that away nor can they effectively treat my daughter without that knowledge. It must be a partnership. And when you are not feeling right about something, keep pursuing it. Don't give up.