things we know:
– Jesus is always with us. on the mountaintops, in the valleys and everywhere in between.
– Jesus is our strength, our help, our joy, our peace, our rock, our shield, our hope, our love. He is the one who sustains us as a family. He sustains our marriage. He sustains our daughters.
– we have two beautiful daughters. each with gifts from God that leave us in awe each passing day. isabella and lucia are like two shining lights in our home. we are so incredibly blessed to have them as our baby girls – all of their amazingness and all of their flaws. all of it leaves me speechless at how undeserving i am to be their mom.
– we have a life blessed beyond measure.
things we’re still trying to understand and accept:
– lucia has been diagnosed with mitochondrial disease complex I & IV. she has a feeding tube and does not eat by mouth as well as developmental delays in gross motor skills, fine motor skills and speech.
– life can’t be lived with fear.
– life is truly a daily gift.
– life is not about us. life is about what God is doing through us and in us for His greater plan and purpose.
things we need others to understand and accept:
– mitochondrial disease is complex; it doesn’t fit in any box. each child reacts differently to mito and the prognosis for each child is truly unknown. this is good because it means we don’t know what the future holds and it is bad because we don’t know what the future holds. from my own limited experience as well as the experiences of other mito families i’ve read about, life with mitochondrial disease is a bit of a roller-coaster. some days we, as parents, have an easier time coping with the disease than other days. please have patience with us. we are trying to figure out life with this disease day by day. we love to feel heard, supported and loved – especially on the bad days. we love to laugh, have fun and try to disconnect from the disease on the good days.
– please wash your hands. every time lucia’s body generates mitochondria a percentage of her mitochondria will be defective. all of our bodies have a limited energy supply, but our healthy mitochondria supply us with 90% of our total energy. lucia is running on a limited supply and her mitochondria only provide her with a percentage of what’s normal. when an illness strikes her body that energy is focused toward fighting the virus or bacteria and away from the muscles and organs that need it most. we all feel tired when we are sick because part of our energy is being focused toward fighting off the illness, but lucia already has a low supply of energy to share. please wash and/or sanitize your hands when you are going to interact with lucia or any child with mitochondrial disease particularly during cold and flu season. our metabolic geneticist, dr. gibson, says something like the flu virus can really devastate a child with mito. it’s hard on their body and takes extra time for mito kids to recover (if they do) to their original energy supply. we, as the parents, can’t contol everything, but we can minimize the risks. so, please help us check some things off our list of things to worry about (and, believe me, the list is long – anything helps!)
things i don’t think i’ll ever accept but know to be true (i still have a hard time talking about these):
– mitochondrial disease is progressive. as lucia’s body generates new mitochondria, a portion of her mitochondria will always be defective, and that mitochondria can generate anywhere in her body – affecting other muscles and organs at any time.
– mitochondrial disease devastates families. though the degree to which the the disease progresses or how quickly it progresses is different for every child, the result can be devastating.
– many children with mito do not survive. (obviously, the hardest one to even type out)
things we ask God for:
– complete healing for lucia
– that the disease will not progress but rather reverse itself (a new drug study from italy just came out saying that the trial drug actually reversed the progression of the disease in 10 out of 10 kids; it’s still very early on in the trials – but a definite sign of hope)
– the ability to walk this life courageously and full of joy
– to be changed in our hearts by this experience. to be new and changed people. to not let this disease kill our spirit, but rather have this suffering revolutionize our lives, allowing us to not care so much about ourselves and help us to live fully for God.