Friday, October 15, 2010

Picture Perfect????

If you were to drive by my house this morning when the kids were getting ready for school you would have seen a scene from a movie. Hugs and Kisses, High Fives and Good-byes. A pretty little red head with such bounce in her step carrying an umbrella while her brothers cram in beside her. One with Clark Kent glasses and a backpack almost as big as he. The other, grinning from ear to ear, wearing his Blaze jacket he earned playing on an AAU baseball team this spring. Their smiles are almost contagious. All three walking side by side in the rain, turning back every few seconds to give there momma a wave and blow a kiss goodbye.

Picture Perfect.

What you don't see on the inside of the house is the mom with tears streaming down her face and the 4year old asking "Mama, why you crying?" She cries because the picture on the outside looks so perfect and oh how she longs so badly for it to be so true.....even just for a day. She will go back up the stairs to start saline and heparin flushes, give GTube boluses to one sweet little girl and begin to prepare for major brain surgery for another sweet little boy. You also don't see that the dad hasn't been home in 3 days because he has worked 3 16hr shifts straight and stays at a relatives house close to his work so he can at least get an extra hours sleep each night rather than wasting that precious time sitting in traffic on a long commute to work. He will likely be to tired all weekend to be the dad or husband he really wants to be. His tears flow each day as well because he isn't able to tuck the kids in at night and can only text them each day to see how their day was or hear about the back handspring someone landed at practice last night.

This is just a small glimpse.

The mom and dads pain in this picture is so deep but they live in survival mode. There is no crashing because there isn't anyone to pick up the pieces. If they stop for a second and really take in the reality of their situation, surely it would break just about anyone. How can you break though when you have a family to love and care for? There are still bills that need to be paid and life has to go on. But that's just it...all this family does is exist. Existing in a world that from the outside looking in, looks as pretty as a picture. Nobody will ever understand what really goes on behind closed doors. Nor do I hope that you are ever in a position to truly understand.

All I want to do is cry and cry and cry. I can't. I do not write these things because I want your sympathy. Sympathy is the last thing I need. I write because it makes me feel better. What I really want to do is crawl under the covers and not come out for a few days...better yet, a few weeks. I do not have that luxury. I have snacks to pack, baths to give, homework to help with. I have appointments to go to, doctors to deal with, bill collectors to fight with. No matter how badly I want to break, I can't. Even if I did, then what would that say about me or my family. Then we would be the family with the two sick kids and the mother that went crazy. Its just not that easy.....and hard would be a major understatement.

I don't know what the answer is. I try to hope for the future to be better, but it truly is hard to dance through the storm when you never see any sunshine. I have to laugh at our reality sometimes, because I just don't know what to do anymore and honestly I am sick of pretending everything is great when it isn't. People ask me everyday "How is Brigitte?" My typical response is "Ummm, she's doing ok. Thanks for asking." What I would really like to say goes something like this: Actually, she's a 4 year old little girl who has spent more days in the hospital than she has in her own bed. She is not physically able to eat because her intestines are not working, so an IV in her heart is keeping her alive. Without it she would be dead. Yes, she is home from the hospital and yes, I let her go to school. That is so she can sort of be like a little girl. But most 4 year old little girls aren't eating with a Gtube in their belly or an IV in their heart. They aren't talking to surgeons about possibly needing a colostomy bag. They are running around splashing in puddles or going on playdates when mine only gets to go to PT, OT or Speech. She didn't get to got to the "friend party" at McDonalds today because the germs there could kill her. Instead she spent the day in the house driving her mother crazy because she can't do the things little girls do. She had to have two needles stuck in her legs and blood drawn from her arms twice this week along with having 3 appointments at Children's Hospital. In addition, she now has to be admitted to the hospital next week even when she isn't truly sick because her 7 year old brother has to have brain surgery and the only way she can be taken care of is by a nurse which the State of NH won't let us have because I don't "work" she has to be in the hospital when really she doesn't need to be. So, how is Brigitte doing? "Ummm, she's doing ok. Thanks for asking."


  1. I want you to know that your words are heard. The pain and frustration is evident in your voice and your text. To write is cathartic and I hope you find some of the peace you need to make it through tonight.

  2. I hear you too! Oh God, how I hear you!

    Write and say whatever you want to say, if it makes you feel even the tiniest bit better! ...and even if YOU don't always feel better after writing it, people need to know what it is like, for Medically Fragile Children and their families who love and care for them at home.

    I know sometimes I cannot even find the words to use for what is going on...its too overwhelming. You do it well. If you don't mind, I want to use one of your quotes with those around us who don't understand, “For families like ours, if you’re not overwhelmed every now and again, you’re not fully grasping the reality of the situation.”

    Thank you for putting your voice out there. For your honesty and for not sugarcoating the ugly stuff. Reality.

  3. I found you via your post at the Children's Hospital Boston blog, and I'm now following your blog. Thanks for sharing your story there. Although our situations are not the same, reading through your older posts has reminded me that there are so many of us dealing with our children's disorders.

    I hope that today is a good day for you and your family. *hugs*

  4. I love your honesty. I totally understand the statement "Um... She's doing okay, thanks for asking" I find myself employing the same tactic, because if the poor inquiring person pushes for more details, there would be hours of medical details to tell.
    I'm glad that your children are in your capable hands, and getting wonderful treatment at BCH.

  5. Thank you thank you thank you for sharing your blog post with CHB. I am a mom of three with my youngest chronically ill (and actually currently awaiting labs looking for Noonan syndrome). Your words rang so true for me and it is comforting to see that there are other people that understand the crazy, terrifying lives that parents of chonically ill children and their families lead.

    I hope that your son continues to improve and that Brigitte continues to get the wonderful care that she gets at CHB.

  6. Shannon... Just thoughts and prayers... I came across Bridget's blog accidentally and I am struck back by the events of recent. I was unaware of Sean and the recent occurances of Bridget... Thoughts and Prayers to keep safe. Jon G.