8 promises to my daughter with special needs

1.) I promise to hold to you to your own standard and not compare you to other children. You are on your own journey and as your mother it is both my obligation and privilege to go on it with you. 

2.) I promise to celebrate your accomplishments and not dwell in your setbacks. 

3.) I promise I won't take anything for granted. Every moment is a gift and I will enjoy every single one.  

4.) I promise to do my research. I will know about every benifit and side affect to every test and medication before a doctor touches you. I promise to have all the information before I make any decisions about your medical care. 

5.) I promise to take time for me. I know that I can better take care of you if I take care of me. 

6.) I promise to ask for help. Everyone gets overwhelmed sometimes and when that happens, I will reach out and get us both the support we need 

7.) I promise to love you. Above all else, I love you. I don't care how hard things are, how many doctors we see, or how many bills, stares or questions we receive, I promise to simply love you. And if other people can't understand, I promise not to care

8.) I will never ever ever EVER give up on you. I don't care how little sleep I get or how big the obstacles may seem, you are my child and you deserve everything I have to give

Love

I have always thought I understood love. My parents loved me so much. My parents have loved each other over 35 years. I fell in love. I have friends I love and they love me. And when I was pregnant, I loved my unborn child. 

I loved her when she was born. But those first days, weeks are hard. Your life changes overnight (first time parents are never really prepared), you are sleep deprived, you hope you are doing any of it right. 

And then we found out she has troubles. Troubles we can't fix, we can only pray for a miracle. And suddenly love is something new. You realize it's deeper and fuller than you expected. Actually, it's deeper and fuller than you thought possible. 

I love everything she does. I love when she smiles at me. I love when she stares off into space. I love when she laughs. I love when she gets mad. I love when she cries. I love when she stops crying. I love when she wakes up in the morning. I love feeling her fall asleep in my arms. 

I love her no matter what she does. Even when she's screaming at 3am and I've only slept 4 good hours in 3 days, I love her. I feel blessed to have this time with her because we don't know how much time we will get. 

Surprise tears

I never used to cry. I was always the stoic one, able to handle everything. Even when my mom had cancer, I held it together. Yes, I cried. But they were private tears, that only showed themselves when the news was fresh, I was tired or I couldn't talk to my mom because she was too sick. 

But I cry openly now. To family. To friends. To complete strangers. 

It always catches me off guard. Because its always at a different part of Eloise's story. Some times it's when I talk about her Los Angeles doctors failed us. The next time it's when stating her lack of diagnosis. Often it's when talking about what her and our future holds and the total unknown we are looking into. 

But the time the tears really just pour is when anyone tells us what a good job we are doing, or shows us an unasked for kindness. We have been shown so much love, from people we have known and loved for years, from new friends and complete strangers.

 

Our Story

When we found out we were pregnant, we were both excited and nervous. We wanted a baby, but were we ready? Over the next nine months, we dreamed about our new life as parents. The baby would be born in January so I was over the moon about next Christmas with an almost 1 year old. We prepared a nursery, we panicked about not having enough clothes for her. And at the end we just waited as patiently as we could for her arrival.

When she was born, we didn't know right away there was a problem. She passed all her tests in the hospital and for the first month of her life, we thought we had the perfect baby. She slept in her crib, she was easily satisfied when breast feeding, and she was so very cute. Then the crying started. At first we thought, babies cry. But it was constant. Suddenly getting her to eat was challenging, getting her to sleep was impossible.

After a trying medical journey, we learned our daughter was born with a small head/brain or microcephaly. During her feeding difficulty, she had fallen completely off the growth charts, head, weight and length. She also has a neurological irritability that caused the excessive crying.  But that's about all we know. She doesn't have a specific syndrome that would cause the microcephaly and so far, that seems to be the extent of her challenges. She could be nearly normal or she could have severe mental disability.  We won't know where she will land until she does. What we do know is she is a fighter, and we will fight for her.

Our daughter has her own blog dealing with the story of health crisis. This is my story, my path to understanding our a-typical child. There is grief when you find out that the life you spent a year dreaming about is gone and there will be challenges in your child's life most parents will never face. There is also unexplainable joy when your child masters a new skill or expresses a new emotion.

Eloise takes up the majority of my time, 24 hours a day but she sleeps much better now. So while she sleeps, my time is mine. I find myself lost in questions about the future, daydreams of the past or sometimes I just watch my little warrior sleep.