adam, the girls and i have been enjoying the normalcy of life this past month – no doctors, no testing, no waiting for results. the girls have kept us busy being sick with colds, unwrapping presents and playing from morning til night. i love normal. i cherish the normal moments when all seems right with the world – ive been soaking them in, hence my lack of blogging. i knew it wouldnt be long before wed have to head to austin and meet with the metabolic genecist and get submerged back into the oceans of medical information. our appointment was originally scheduled for february 28th, but they called me two weeks ago to ask if we could make it on january 3rd instead as theyd had a cancellation. so this appointment that id been so anxiously waiting for was suddenly upon us. i was anxious because i had imagined that wed either be given good news (lucia didnt have mitochondrial disease) or bad news (she did). and after an hour of an in-depth lecture by the doctor on mitochondria and its elaborate function as well as another half hour line-by-line interpretation of lucias muscle biopsy, he told us what ive been most dreading to hear – lucia has mitochondrial disease.
i may be imagining this, but the way i remember it the doctor stood up, walked over to me and punched me in the stomach as he said those words – a punch for every syllable.
but, perhaps thats just how it felt.
the truth is that not only is this doctor extremely knowledgable, he is also extremely kind. our first question, of course, was what is the prognosis? his answer: he cant give us a prognosis. every child with mitochondrial disease is different. he has treated babies who dont live past a year as well as young adults who live to tell their story in front of conference rooms full of doctors. he is a believer that no one can put a limit on lucias life or how much she is able to accomplish. he went on to tell us that he would become lucias primary doctor. he was also going to add an audiologist and a cardiologist to our already long list of mds. he wants lucia checked by these doctors every 18 months to 2 years to make sure the disease is not affecting other organ systems.
so, my initial desire as we walked to our car that afternoon was to break down and cry, but (have i mentioned that i have the best husband in the world?) we got in the car and adam and i had the nicest talk weve had in a long time.
we understood that we had just been told that our daughter was going to die, BUT we were not told when or how much time we had left with her. AND that sounded strangely familiar because that is the exact same prognosis for every single person that has ever been born, is being born or will be born. even before our first breath God already knows which will be our last. that goes for me, for adam, for lucia and anyone else currently living. it was kind of exhilerating to realize that we had not been told anything new. and that we dont sit around living in fear each day wondering how much longer we have with those we love and we will not allow ourselves to live in fear with lucia. we will take every precaution we can as the doctor urged us to do, but we will not sit around wondering when the end will be. it could be 80 years from now and boy, would we have wasted many days of worry for nothing.
now, that doesnt take away from the fact that this hurts – diagnosis or not – its hard to watch my baby work for every milestone she meets. nothing is easy. nothing is ordinary. it just plain hurts.
in the very beginning of lucias life, a very wise woman (who had had two very ill children) once told me to realize that this journey God placed me on begins with the grieving process. she told me to allow myself to grieve the loss of a normal baby experience with my daughter. she told me that it was okay to mourn over the radical changes taking place in our lives. that it was okay to cry because i felt so alone with such a burden to carry.
but, i did not believe her.
what i believed was that i had failed.
others around me intending to help kept telling me that if id only try a different kind of bottle, gentler formula, a new medicine, another doctor, a new kind of food – lucia would suddenly get better. mothers from the beginning of time had the ability to feed their children – what was so wrong with me that I couldnt even accomplish such a simple task? i, myself, kept thinking that if i had taken better care of myself during the pregnancy this would not have happened to my baby. if i had only stayed better hydrated, not picked up my two year old, eaten healthier foods – had not had that one cup of coffee – perhaps i would not have brought this on my child. i did not have any right to grieve or mourn – because i was somehow to blame for this. i believed that and it seemed the world around me did too. how could i sit down and cry about this situation when i had caused it to happen?
this diagnosis changes nothing about lucia. she is still the vibrant, charming cuddly little girl shes always been. it doesnt change Gods purpose for her life or what challenges she will overcome. it does, however, change something. it gives me permission to cry without feeling ashamed or unworthy. it gives me the freedom to say that i am sad and to feel some peace that this was not my fault. that i am the right mom for lucia and isabella – the kind of mom God wants them to have.
i can say now that i am somewhere in the grieving process – who knows where! but i can also tell you that grief is only a part of this journey. it is not the whole.
i had been racking my brain all day to figure out what to say in this post and how to say it. how do you describe the feelings attached to a diagnosis? or to developmental delays in your baby? how do you attach words to the massive uncertainty of the future? i dont know. i feel wonderful and horrible things all at once.
crazy as this sounds – tim tebow was my answer from God today. (yes, i am a tebow-ist) my husband has gotten me into his story, his courage and his radically out-spoken life. so we went online tonight to listen to his parents tell the story of tims dramatic life before and after birth. and at the very end of their talk they repeated john 10:10. and it became clear as day that this verse is the true purpose of my post.
here it is:
the thief comes only to steal and kill and destroy; I (Jesus) have come that you may have life, and that you may have it more abundantly – to the full, till it overflows. john 10:10
i ask that you would pray this over our little family. that we learn from this journey to live life abundantly in the fullness, love and supernatural peace of Jesus.
and i will pray it for you (my sweet friends) and any other mom out there of a medically fragile child who is searching for joy and purpose along this path of life.