Carrying the weight
Posted Jul 20, 2010 9:10am
Sometimes as a parent of a medically fragile child I feel like I'm carrying the weight of the world on my shoulders. There is such a fine tuned balancing act that one must perform daily to keep their hearts at peace and joy in their lives while simultaneously caring for their little ones. Brian and I are a team. We are so blessed to have each other and continue to travel on this journey with Kaden as his parents. Last night we looked at some baby pictures of our precious gift and enjoyed watching Kaden's responses to his own pictures. He's fascinated by the fact that he was a little baby and is now a big boy. We are doing the best we can to help him thrive, stay stable, and enjoy his little life. He is still struggling with apnea, pain, feedings, digestion and unfortunately last night we noticed significant swelling in both of his knees. He says that his knees hurt and I'm at a loss. His surgeon doesn't quite know how to manage his painful episodes but Gran (my mother and angel) found that heat helps calm down the spasming of his esophagus. She placed him in a warm bath yesterday to help calm him and it worked.
He is in sensory overload right now and we are implicating a new sensory program to help him tolerate his environment and his own body. Articles on the internet state that what Kaden feels when he's in sensory overload is compared to someone rubbing your skin raw with sand paper and unleashing ants all over your body. We are using techniques that his OT, Summer, taught us the other day. She came over for an emergency intervention because Kaden couldn't even tolerate his clothes much less a diaper. He is still losing weight, but is still happy. So I ask you all this.... What really matters anymore? I mean really...think about that for a minute. If you sat and watched a loved one ride this scary rollercoaster....what would matter to you?
I find my emotions scattered all around me like a discarded puzzle and don't really care to pick up the pieces. They don't seem to fit together anymore anyway. Instead I'm choosing to throw every piece into the air and asking God to hold on to them for me until I can put them back together.
The older kids are coping in their own ways and Julie from Hospice is helping them find ways to express their feelings. She is phenomenal and a highlight to our week. She will be coming today and hopefully will be able to gather more information about Kaden's feelings during her session.
Our nursing team is small, but everyone on it plays a very important role in Kaden's life. I'm so grateful for each and every one of you. I'm thankful for his therapy team too. You are all special people and cherished so much. If your bosses don't take the time to tell you what a great job you're doing....Allow me to thank you on their behalf. Know every time you lay your head down to go to sleep that YOU have made a difference in life of a very special child. YOU have made yourselves vulnerable to the pain of bonding with our fragile little man knowing what's at stake. YOU help give him a quality of life when other people don't even take the time to really know him. YOU venture outside what I call the "real world" to interact with our son and there simply aren't enough words to express our gratitude for all of you. Thank you for playing in the "wava" (lava), becoming a teenage mutant ninja turtle, role playing Toy Story characters, sword fights, Nemo, reading stories, teaching, shaping, correcting, working with and giving of yourself to Kaden. Together we make up his world.
Today I vow to reflect on what really matters. Today I will be thankful. Today I will enjoy every moment to the best of my ability. Today my heart feels heavy as does the weight of reality, but I pray for relief. Today I trust that everything happens for a reason. Today is another day that we're privileged to have our son. Thank you Lord for choosing me and giving me the honor of calling Kaden my son.
Thank you to friends and family as well for prayers, good thoughts, and support. Thank you to my parents and my third grade teacher in helping me be who I am. The little seeds planted that were planted along the years will hopefully continue to grow into strong roots of faith, devotion, patience and happiness.
He is in sensory overload right now and we are implicating a new sensory program to help him tolerate his environment and his own body. Articles on the internet state that what Kaden feels when he's in sensory overload is compared to someone rubbing your skin raw with sand paper and unleashing ants all over your body. We are using techniques that his OT, Summer, taught us the other day. She came over for an emergency intervention because Kaden couldn't even tolerate his clothes much less a diaper. He is still losing weight, but is still happy. So I ask you all this.... What really matters anymore? I mean really...think about that for a minute. If you sat and watched a loved one ride this scary rollercoaster....what would matter to you?
I find my emotions scattered all around me like a discarded puzzle and don't really care to pick up the pieces. They don't seem to fit together anymore anyway. Instead I'm choosing to throw every piece into the air and asking God to hold on to them for me until I can put them back together.
The older kids are coping in their own ways and Julie from Hospice is helping them find ways to express their feelings. She is phenomenal and a highlight to our week. She will be coming today and hopefully will be able to gather more information about Kaden's feelings during her session.
Our nursing team is small, but everyone on it plays a very important role in Kaden's life. I'm so grateful for each and every one of you. I'm thankful for his therapy team too. You are all special people and cherished so much. If your bosses don't take the time to tell you what a great job you're doing....Allow me to thank you on their behalf. Know every time you lay your head down to go to sleep that YOU have made a difference in life of a very special child. YOU have made yourselves vulnerable to the pain of bonding with our fragile little man knowing what's at stake. YOU help give him a quality of life when other people don't even take the time to really know him. YOU venture outside what I call the "real world" to interact with our son and there simply aren't enough words to express our gratitude for all of you. Thank you for playing in the "wava" (lava), becoming a teenage mutant ninja turtle, role playing Toy Story characters, sword fights, Nemo, reading stories, teaching, shaping, correcting, working with and giving of yourself to Kaden. Together we make up his world.
Today I vow to reflect on what really matters. Today I will be thankful. Today I will enjoy every moment to the best of my ability. Today my heart feels heavy as does the weight of reality, but I pray for relief. Today I trust that everything happens for a reason. Today is another day that we're privileged to have our son. Thank you Lord for choosing me and giving me the honor of calling Kaden my son.
Thank you to friends and family as well for prayers, good thoughts, and support. Thank you to my parents and my third grade teacher in helping me be who I am. The little seeds planted that were planted along the years will hopefully continue to grow into strong roots of faith, devotion, patience and happiness.
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