We will be dancing in the rain

Our last admission at Mott was possibly the hardest. Faith had three trips to the OR. We were in isolation. She had all but a few inches of her colon removed and she went seventeen days without being able to have anything by mouth. We were there a month. The longest month of my life.

One afternoon I was checking my email and I saw that my blog had a few comments. I hadn’t posted in a while so it seemed strange to me. I checked the comments and there was a message from a woman who only identified herself as a mother of a girl named Ashley who had the same issues as Faith. I was very skeptical. Really, no one had the same issues as Faith, she asked if I would please call her.  A few weeks earlier I received a similar message on Facebook from a Grandmother of a four-year old boy who had just died of Hirshsprungs Disease, a disease much like the disease Faith suffers from. I contacted this grandmother via email and she told me that her  grandson had died and they were just looking to share his story with me, in hopes that possibly they could help Faith somehow. I was grateful, but honestly it came at a horrible time and really just scared me more than anything.

Ashley’s mothers message came at the perfect time, I just learned that we were going to be discharged within a few days, and I was in a fantastic mood. I had the hospital operator connect me, so that she wouldn’t have my cell phone number. The phone rang twice and I decided that if it rang four times I would hang up, that possibly we were not meant to speak. Ring three….A woman with a very strong southern accent picked up the phone. You would think that conversation would be uncomfortable at first, calling someone I didn’t know, but instantly we connected. She asked how Faith was doing and understood everything I was telling her. She understood malabsorption, and told me what great success they had with Ashley’s GJ. She understood our worries of blood flow and new issues we were having with SMA Syndrome. If  I had any doubt that this woman was not who she said she was, it was gone, she knew it all.  A mother who had spent years dealing with what we were dealing with. We spoke about Faith for twenty minutes and I was thinking how great it would be for Faith to meet Ashley. A teenager with a colostomy bag, and feeding tubes, just like her.

I then asked Ashley’s mom what seemed to be a very appropriate question. How is Ashley doing?  The minute of silence that followed that question made the answer completely clear to me. Ashley had died. She was gone for a year. She, like the four-year old, had got an infection and very quickly died. Something to do with sodium levels.

In my professional life I used to teach classes on building relationships, teams, doctors, nurses, I used to pride myself on knowing how to talk to anyone. Suddenly, there wasn’t a single word that seemed appropriate. All I could think to say, and what I find myself saying more often than I would like, to the other parents up at Mott is,  I don’t understand.  I then asked if there was something I could do for her, I didn’t really  understand what that would be, but I felt as if there had to be something she needed from me. But there wasn’t. She asked if there was something she could do for me. Yes…I thought, tell me what you did wrong, where did you let her go, who was she with, did you let her go to school, what about public places with lots of germs, what about flu season, what did she eat, and what happened that in twenty-four hours your daughter went from good to being gone. I had everything to learn, I could protect Faith, I would not make the same mistake. Her answer would change my life, it would change how I do everything.  But my question came out, in a much different fashion. What would you do differently? Her answer, is changing how I do everything.

She said. “I wished I would have stopped waiting for the storm to pass….because it doesn’t. I wish I could have learned how to dance in the rain, because Ashley missed out on a whole bunch of dancing.”

Our conversation ended at that point, mostly because I started crying and was unable to speak. I thanked her for contacting me, and for having so much courage. I told her that she and  Ashley were going to be helping Faith, because Faith loves to dance and I am always turning off her music.

 As a parent you want to protect your children. You want them to be safe. But what happens when you can’t protect them. A stomach virus, flu, or any other regular infection puts Faith in harm’s way, and immediately back into the hospital. Faith is a chronically ill child, three-quarters of her immune system is in her messed up digestive tract. In kindergarten kids get sick all the time…So, how do you decide? How do you decide what to do?

I have thought about Ashley everyday since I spoke with her mother and I keep asking myself are you waiting for the storm to pass? It’s going to take some time to learn how to dance in the rain, I’ve lived my entire life waiting for the storms to pass, and it has been a very scary couple of years with Faith. But I know that when I look back on Faith’s childhood, if all I have to hold on to is hospital stays and her illness, I will be sad for her, because she deserves more than that.

This afternoon I was looking for airfare to Orlando, a place we used to go all the time. She said, Mom are you going somewhere? I said, hopefully we are all going to Florida. She said, Mom Florida is too far away from Mott, we can’t. I reminded her that I made her a deal that when she was all better we would go to Florida to see Auntie Barbara, Avery, and Mickey Mouse. She says, But Mom, I am not better and I don’t think I am ever going to be better. So just forget it. And she walked out of the room.

And that is how I decide. Six year olds should aways want to dance in the rain, I am just going to have to show her how.

Ashley’s mother didn’t have the magic solution to keeping Faith healthy, but she did have the solution to keeping her living…Life isnt about waiting for the storm to pass its about learning to dance in the rain.

18 thoughts on “We will be dancing in the rain

  1. As always, thank you for sharing your life with us. I give you, and your blog, credit for helping change the way I viewed my world and how I choose to raise my boys. You have given me a proactive perspective on the challenges we, as parents of children with special needs, face on an daily basis. I’m having trouble finding the right words to express my gratitude and show you how happy I am in not only noticing you, but also in following your blog and posts. Thank you. God bless you.

  2. It has to be so hard to let go and just live. I don’t pretend to know how I would handle your situation, not knowing what’s around the corner. But you are doing a great job. I’m so happy for you all that you are going to teach your daughter, and probably yourself, how to dance in the rain. Enjoy every moment. God Bless you all!

  3. You are truly inspiring, I’ve been a reader through lil blue boo, and what you are going through and the strength you, faith and your little boy is incredible. You have extra prayers sent from toronto, Canada today.

  4. I am so grateful for you for sharing your journey. It’s not something anyone who is not living it, can fathom. I am praying for all three of you daily. God bless you and your family.
    I have a 4 mo old who only poops every 12 days. I’m scared beyond belief, and wonder if finding your blog was a sign to have her tested for Hirschsprung’s. Is there anywhere on the blog that talks about Faith’s symptoms as a baby in more detail? My husband is a radiologist, and afraid to have radiation if it’s unnecessary. Our doctor remains on the fence, and I feel the decision has been put on my shoulders.
    I hope you have a much needed wonderful time dancing in the sunshine. (Not much rain in Florida) 🙂

  5. As a nurse I have seen the sad reality of a chronic disease and what it can do, to a patient and a family. As a mom I cannot imagine trying to dance when it was all I could do to walk. Now as a patient I dance every chance I get. Whether people are looking or not. It no longer matters, and dancing in the rain is way better than waiting for the storm to pass. I am glad to hear that you are thinking about dancing, Faith will always remember that and so will you. Let me know if I can help you in anyway, I have a fairly good dance mix! Hugs to you all

  6. I wish I could hug you, Faith, and Will. You are so right in wanting to teach Faith to dance in the rain when your first instinct is to huddle up close. You amaze me with your dedication and courage and help me to be the best I can be in dealing with the challenges in my own life. May God bless you and I will continue to pray for your whole family.

  7. I sit here in tears as I read this one post….Everyone is fighting a battle, some battle, imagine if we all could learn to dance in the rain. Prayers from NH are sent to your family and you.

  8. Another way I say it is… “we did not save Mia’s life so that she could not live.” Its a constant balancing act. Protecting enough not to kill her, but letting go enough to enjoy life! Our everyday thoughts

  9. I just found your blog and reading through it I find so much that I can identify with. My son has Hirschsprung’s Disease that was well managed for years until last year when a small bowel obstruction turned our world upside down. We have no specialist in our area who are equipped to manage his disease so for three years we’ve been traveling 1100 miles to a specialist at CIncinnati Children’s Hospital. It’s very stressful having your doctor so far away. Since the bowel obstruction he’s had on-going issues including daily pain. He had another surgery in the fall with the hopes of correcting some of the problems and ending the pain. There has been some improvement but he still has pain. We’ve been warned that they may never be able to identify the source of pain which breaks my heart. As so many other families with struggles we do the best we can each day.

    Thank you for sharing your story. I send you and your children big hugs and lots of prayers.

    1. We took Faith to Cincinnati for a second opinion, and Boston, and…I love Michigan we are very fortunate to live so close, though if I won the lotery Id move even closer.
      The pain thing kills me…makes me so sad. They shouldn’t hurt all the time. It is not okay. Its a pleasure to meet you Tammy please stay in touch

  10. I can’t stop crying!!!! I cried (sobbed) the entire time reading your blog. One hr later I’m still crying and I can’t stop! I want to see Faith dance in the rain with Mickey. I wish I could do something to make her all better and take all your worries away. I don’t understand either 😦 I do know this, you are the most amazing mommy I have ever met! I love you and Faith and you guys are in my thoughts and prayers every night. I can’t wait to see the pictures of Faith dancing with Mickey and Minnie!!!!! xoxoxoxoxoxo

  11. When I sent my kids to the Rags to Riches fundraiser earlier this spring, we knew a little about Faith’s story. My kids were proud to be doing something to help, and have since then frequently asked if I know how Faith is doing. It wasn’t until a few weeks later that I put it all together and realized that you are Faith ‘s mom. Of course she loves music and dancing. You are her mom! Thank you for posting as it has made me slow down and appreciate my own children more. We will continue to hold your family in our prayers.

  12. Thanks for this post. I have been waiting for six months for the storm to pass, but I guess I should be dancing in the rain. My daughter is 4 and has leukemia; I can totally identify with the infection worries. Anyways I read this a few days ago and haven’t stopped thinking about it since. Thanks!

  13. My son was diagnosed with cancer at 16 months of age. They told me the treatment was so toxic that it would kill him before the tumor would. When facing no chance of survival and a three month life expectancy i was given the best advice I have ever recieved. You have to decide the quality of life to give your child. Be it for 3 months or 18 years. At that point I threw caution to the wind. If we had 3 months, we were going to have the best d@#$ 3 months ever. Dante is 19 now and getting ready to start college. Quality of life is everything to these kids. You are forever in my thoughts

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