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.

Saturday, May 23, 2015

What We Learned From All the Funerals


My husband and I think and talk about the first four years we were married before any kids were born often. We think of some special trips we took. We think of working full time and getting through college together. We think of the other places we lived and the people that got us to where we are now. Another thing that we did a lot in those first four years of marriage that we think of are the funerals we attended.
Within those four years we attended the funerals of my Dad, my aunt, an 11 year old cousin, Frank’s grandmother, Frank’s grandpa, Frank’s Uncle, a hair dresser I worked with, a close friend’s father, a young scout aged boy Frank was an advisor over at church, and a three year old cousin.

With the attendance of each funeral we would talk more about the Plan of Salvation together and what we knew to be true. Some of the people that we went to funerals for died due to old age, but the majority were unexpected heart breakers, or long drawn out painful diseases. Each funeral we would discuss more in detail our own funeral plans and what we hoped would happen before we died, and also what we would do if the other person died before those hopes were fulfilled. Sounds weird, but it was really comforting and interesting to hear what each other had to say about it. Also because the majority of these funerals were unexpected and devastating it helped us to grasp on to the idea that we do only have once chance on earth to make the best of our lives, and we have no control over when our chance on earth is over.
So beside the fact that it helped us to plan our funerals before we were 25, we also made an effort to keep the “you only live once” mindset at the forefront of our decisions and our relationship together. We used it to see time together, holidays, etc. as a chance to make the best of it. When we had our first baby and we found out she had a chronic disease it helped me not to ponder as much on the possible future events of her life in a negative way but to remember what we had learned from all those funerals and focus on making life as awesome as possible right now.

For some reason it also caused me to have a fierce aversion to anyone mentioning or referencing future tense me having another kid. I had this baby girl, and felt I needed to focus on her and helping her to have the best existence, I felt I could not think about other children I did not have yet. On her first birthday I kept thinking, “what if this is her only birthday.” It sounds totally morbid, but I just kept thinking that over and over again.
Then as all the current family pictures can show this attitude didn’t last. Impressions, thoughts, ideas, (good ones) would come from a Father in Heaven who loves me and my husband very much, our hearts were opened, and we were blessed to have our 2 sons. However as each of these sons came to us, we always assumed as with our first daughter that we were done having children.

The time we had after our second son was born was the longest period of time that passed before the impressions came that another baby was to come to our family, the baby girl due now within the month. It was a long enough period of time that we got very used to the idea. He (Orson) was going to be our baby.
His older brother started Kindergarten this past year and because of Orson’s late fall birthday I planned on having 3 years at home with him alone until he would start school as well. My Mom encouraged me to get my substitute teaching certificate so I could start subbing this past school year and get back into the classroom so as to be more prepared to have a classroom of my own when my baby, Orson, started school himself.

It was such a great year. Orson and I worked out a lovely routine together. He is old enough to use the bathroom on his own and talks very well so he was such a fun big boy to be with. He and I became such great friends as we focused on each other during the day as the rest of the family was gone. It was a brand new experience for me as a mother to have only one kid home to look after who was old enough to be independent and talk with me and enjoy. Also, I loved my time in all the different grade levels I could find to sub in at my two older children’s school. I had a little taste or working outside the home again. Orson had a taste of spending time with his incredible Grandma and also became a special friend to her.      
So the last week of school was very bittersweet as I saw all of the kids graduate one more year of school, see pictures from the beginning of their school year and how much their have grown and changed, and also to know that Orson and I’s time together on our one on one adventure is over.

Of course it goes without saying we are thrilled to be going into a crazy wild summer with the entrance of our baby Ruby into the family. We are all on pins and needles for her arrival and can’t wait to start holding her and loving her. But I can’t help but turn around and salute the end of the era I had with Orson last year and be so thankful for that fun year we had together with just him and I during the weekdays. As for Orson, he is thrilled for his sister, but talks about his concern about sharing my lap. Good luck buddy, just know your not the first to be dethroned from Mom's lap. The other's have survived it nicely. 
 
 
 

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