Caring and Compassion

Maddie was extremely fussy today. The diazepam (the emergency seizure meds) given yesterday stopped her seizures by putting her to sleep right away. She did not appear to have gone back to sleep Chris woke up to a very awake, fussy, and congested Sleeping Beauty.   He used the CoughAssist and the suction machine to help her clear her airway. She continued to fuss until she went to sleep around 10 this morning. I was able to give her Motrin and it calmed her down some. We are hoping to avoid the morphine that has been prescribed to her. The Hospice Nurse has explained to me that morphine can help with breathing complications and pain issues especially in the middle of the night. She slept through speech and occupational therapy. Right now since she is so weak and sleepy, we are doing lots of positioning (her feet and knees are retaining water and are swollen) and light massages on her. We have to watch Maddie and let her tell us what therapy, activities or schooling that she can do. Chris and I are still overwhelmed by all that is going on with our sweet girl. Hospice seems like it’s such a hard and negative word but so far it basically means more support for Maddie and our family. It doesn’t mean giving up hope and stopping meds, treatments or the ketogenic diet but to make her as comfortable as possible and for her to have the best quality of life with access to a nurse 24 hours a day, a pediatrician, an assigned nurse, social worker, and a child life specialist to help the other children to handle Maddie’s terminal illness. I’ve been trying to gage whether there is a timeline for this entire process but basically with the signs of her sleeping so much, the increased seizures, respiratory issues, and fussiness/pain is indicative that Maddie is medically declining. All of her doctors and specialists agree that for this time “Hospice” is best for Maddie.  It appears her little body is tired and we just have to wait and see…. We are very blessed to have Hospice and all of the compassionate personnel that is so caring and loving! We are also so very thankful for all the love, support and prayers that we have received from everyone including other families that have children with chronic illnesses or that have lost their own children recently. I belong to a Facebook group for mom of special needs children. They have dinner once a month and go on retreats (both which I haven’t been able to do) along with providing support for one another through the group FB wall. One mom in particular, Sara, just recently lost her sweet princess 4 months ago and even though she is grieving she still took the time to call, text, and messaged me to provide me with much needed emotional support and so that I won’t feel and be so alone. We cried together and bonded because of our girls. We both agree: “Parents shouldn’t have to bury their children.” We don’t know how long we will have Maddie with us on this earth. She appears to be declining so we are taking every moment for moment. Chris, the girls and I are extremely blessed to have all the love and support from those of you that have sent emails, phone calls, texts, cards, or visits. No one should feel like they are bothering us with a phone call or two, messages, text or email. Your concerns and prayers truly encourage us and lift us up.  It’s times like these when we do see the “real” love, compassion, and empathy from those strangers, acquaintances, friends and family members that truly love, support and care about Maddie and our family. We have sadly even in our own family members that have not made an effort to inquire or call us about Maddie because of whatever reasons. Sometimes, I think people (including myself) often times get so caught up with their own needs that they forget about the needs of others and how best to support those concerns or needs. Sara is one of those special people that God put on earth to show us all how to still be a caring and loving individual no matter how busy or tragic or complicated life is right now.  We pray that God will provide us with peace, comfort and love throughout this journey and a caring and compassionate love to serve others even during our own trials and tribulations of life.