are we there yet?

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If you ever have the opportunity to walk around a children’s hospital and just observe whats happening around you, I think it’s a great idea. It does one thing for certain, it puts life into perspective. It makes you realize what you have to be thankful for and just how precious life is.

Listen to the conversations the parents are having, they’re talking about their children. They’re talking about when they get to go home, they’re talking about the rock star doctors that are saving the lives of their children. They’re talking about the nurses who seemingly love the children as if they are their own. The conversations are heavy and full of drama. Real life drama. They are comforting. As if your pain hurts a little less, because someone else is going thru it.

Whats even more inspiring is to listen to the conversations the kids are having. I often have to walk away from them talking because the conversations are so real, and painful that I am unable to stop the tears from falling from my eyes. They feel normal around each other, and I understand that feeling. I feel normal talking to their parents as well. Today Faith talked to an eight year old boy named AJ, a heart patient from Nebraska. They were exchanging their stats, how many trips to the OR, how many pumps they’re on, what meds, how long they’ve been NPO (noting by mouth),how many specialists they see, their doctors names, etc. When Faith looked at me and said, “Mom, whats my nephrologist name?” She was trying to get his name because AJ had kidney pain and his doctor didn’t believe him. Faith is 5. A five-year old shouldn’t be able to refer her 8-year-old friend to a doctor. But these kids can they all can.

Sometimes, I get really mad. I believe Faith has been admitted to the hospital 7 times this year. It seems like we are here all the time. Our life is interrupted. I can’t work, and take care of things I need to take care of. Things are falling apart. You lose touch with everyone, because your normal relationships are gone. It’s so frustrating. So, I too occasionally have to take a walk to gain perspective…one trip to the oncology floor, knocks me back into shape. There are kids up there who have been here a year, some even longer.

The recovery from this most recent surgery won’t be fast. She needs to start tolerating her feeds, and gaining weight. She has a long way to go, and once she gets there we have to go to Cincinnati. We may have to stay there for a while. This is a long, long road. Her surgeon told us at the beginning of all this, it would be. When I was little I hated long car rides, I would ask my parents all the time…are we there yet? My dad never answered, only my mom would…almost, Mary Ann. This seems like the longest, worst road trip, I’ve ever been on. My dad died last year, so now I just ask him….Dad are we there yet? Just for this one time I am certain he wishes he could answer.

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6 thoughts on “are we there yet?

  1. sherry

    I wish your long road had a good ending soon but know thats only a wish . I do pray she will get better and life will get a little less stressful. We have a big Childrens Hospital and a friends son was burned and was there for about 8 mo. it was a long hard time for her so I have seen and heard some of the things them babies go through. I do think they are all special gifts sent to this world . I wish your family all good heath to come and the road does get better. may god be with you and help you keep your head up ….

  2. Oh Mary Ann…. I’ve always said that CS Mott is a terrific place that should never have any patients. There isn’t a single patient there that deserves the lot they’ve drawn, and not a single parent there that should have a child going through what they’re going through. A walk around there always gave me all the perspective I needed, and more than I ever wanted. Please know you two are continually on my mind, in my thoughts, and in my prayers. May God bless you with strength for Faith, and may your faith in God keep you strong.

  3. Connie

    Mary Ann,
    I don’t even know the words to say to help you & Faith. My heart aches for you both. I pray God continues to give you strength to be strong. I wish I didn’t live so far away so I could just come sit with you & pray with you & just help you. It’s not fair at all, but Gods plans usually are not our ways or plans. Much love to you both.

  4. Stay strong Mary Ann, you are an inspiration to readers of your blog, both as a mother and as a person! Your little Faith is so lucky to have you in her life as is your son who also is learning a great deal through these events about gentleness, kindness and total selflessness… Both of your children will grow up to be amazing people in this world where a lot of things are taken for granted. You have been dealt an unfair hand, but will come through it with flying colors and the lessons you take away from this will be far greater than the pain and frustration you feel in these troublesome times. God will see you through!

  5. Christopher Ames

    Mary Ann,

    Strength in the face of adversity is a rare quality and it is even more rare that several people in

    the same family show the same qualities. You, Faith, and Wil all obviously have this incredible

    strength and people like myself are in awe of individuals like you that have it. The mere fact that

    Faith puts her fellow roommates ahead of herself when they may or may not be in worse condition

    than herself makes tears come to my eyes knowing the pride you must feel in seeing the strength

    Faith portrays. I pray for your family Mary Ann and I pray for you as well because I know you are

    missing so much of “regular” life. If there is anything that I can do for you, or if I can even offer a

    period of “regular” life for you, please don’t hesitate to call. I will continue to send prayers. Good

    luck little Faith and God bless!

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