I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Thursday, May 28, 2015

Letter to Ruby : May 28, 2015


May 28, 2015

Dear Baby Ruby,

     Guess what? We can’t wait for you to get here! Charles has been dreaming of holding you since Thanksgiving morning when we told him you were coming. He talks about it all the time. How he is going to sit and just hold you all day long. Every morning when I would walk him and Orson to the Kindergarten playground to play until the bell rang he would stand by me for a while each morning and proudly point out my pregnant belly to anyone who would turn our way and say, “My mom is having a baby you know.” And his eyes would shine and you could see him dreaming of you and he already loved you and he hadn’t even seen you.

      Maelee has been praying about you since she was 2 years old. She started to talk about you, not that she wished you would come, but that she knew you were coming. It was always matter of fact when she referenced her sister, you. When she first started praying about you it was before we had told her we were pregnant with Charles. When we told her we were pregnant then, and then found out it was a boy she didn’t seem worried. She was older when the same thing happened with her second baby brother, finding out it was a brother and not a sister I mean. She was more upset then. Impatient I think for you to get here. Then after Dad and I went to the ultrasound when we found out Maelee’s sister was finally coming we went right away to see her at her school. She was eating lunch and she knew we were there to tell her if she was having a brother or a sister. She jumped up from the cafeteria table and ran to meet us halfway for the news. Happy isn’t a strong enough word to describe the look on her face when we told her she was having her sister come. Now, especially since my stomach is so big since you are almost here she is always stopping throughout the day to give you a hug. She tells me, “I can’t wait to have my baby sister Mom.”

      Orson, your big brother, is the youngest right now. He seems a little worried about sharing me with you. You two will have the most time together before he starts school. We will have our routine together when school starts again, the three of us - while Dad is at work and the older two are at school. If you feel squished sometimes, its him gabbing his elbow into my belly trying desperately to make himself comfortable on what’s left of my lap. He does talk about you and what he will help you to learn while we are driving in the car. Morning time in the car is his deepest thinking time to think before he speaks. He has mentioned you often during these last few weeks. So at least he has a little sense of you coming into the family.

We all love you very much and will see you soon!
Love,

Mom
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