That said, I have finally completed a letter to myself below that I started some time ago in my head. Something I wish I could have read in the beginning, and something I hope will help future hydro parents when they first hear those frightening words and the doom and gloom that seems to cloud any hope they may have.
I know it is frightening. I know it is not what you expected. I know there are so many more questions than answers. But I want you to listen to me for just a minute. Just take a moment to feel calm, and open your heart. The child you are carrying is there for a reason. It isn't by chance that at the moment of conception, you became that child's mother. The child was chosen for you, yes. But you were also chosen for that child. Out of all the possible mothers in the world, God knew you could care for this child.
I know it seems so unfair right now. There are so many questions you have. Will the child be born alive? Will the child survive modern medicine to be able to go home? Once the child is home, will she smile? Will she see? Will she hear? Will she be able to reach, grab, touch, or feel? What kind of pain will she be in? How many surgeries will she need? What other complications will she have? What kind of life will she live? How long of a life will she live? Will she learn? Will she grow? Will she be happy? Will she know love?
I want you to know that there will be hard times. There will be times of uncertainty. There will be times you have to see your child endure pain. There will be times your mind feels crazy with questions, anger, frustration and sadness all at the same time. There are times when no matter how much love you feel looking at that child, you will just want to give up. There will be times that you don't do everything you are supposed to do - miss a medication, not work with your child, just need to take a break to lay down and regroup. There will be times you really feel it is all just too much. When you ask why. Why me? And feel like your life is over. Feel like it is all just too overwhelming and you cannot possibly go on in your situation.
I want you to know that all of that.... is ok.
It is ok because the good things will far surpass any of those feelings or bad days that you have. When you are down or overwhlemed, feel it! But know that there is always good to come out of it. You will jump for joy at every tiny milestone your child makes. A smirk, drinking more than a half ounce out of a bottle, moving fingers and toes, or the twinkle in your child's eyes....and all the little quirkisms you will come to know as your child will just set you on fire with happiness. You will be priveleged to learn about the world through a very different set of eyes. You will learn to be generous and loving, even moreso than you are now. And you will also learn when to be hardened and strong. You will learn that being "Mama Bear" is not a bad thing, and your ability to teach and show others through actions will eduacate others on how to be better people, more inclusive people, and ultimately advocates for the people like your child. You will learn what true friendship really is, and just how loving and supportive a family can be. Your child will be loved. Happy. Your child. Most of all, they will be made in God's image. Unique, special, and a little touch of heaven on earth.
So hang in there. Remember a day is just a day. God always gives us hope - and the sun always rises the next morning. Teach these things to yourself and your child....the bad is there to produce more good. The tough times always produce progress. And God is always there through it all.
2013 has been good to us in so many ways, and also had its challenging times. 7 hospital stays, 4 surgeries, therapies and setbacks. But we have also seen miracles - seizures controlled, becoming a sitter, and an absolutely explosive personality that strikes through even the toughest of souls. Here's to a wonderful 2014... many blessings, many happy moments, and the ability to take anything else in stride and realize the miracle in it all.
God Bless everyone and Happy New Year!