He knows.

   On June 20, 2008 we were practically jumping out of our skin in anticipation of Corrigan's discharge from John's Hopkins. He was over three weeks old and had yet to see his home and Mark and I were slightly terrified but very excited to make the two and a half hour trek to the comfort of Western Maryland.  When word came that the doctors were considering discharging us that Friday my heart began to pound in my chest and my brain began working through so many disaster scenarios that all included my baby becoming seriously ill again.  I was not confident that I could keep him "well" and the all-encompassing unknown of dealing with a chronic condition was overwhelming beyond words.

We were leaving John's Hopkins with very little knowledge but a lot of hope and faith. 

( I can hear Mark's voice in my head…his oft-used phrase, " Hope is not a plan" echos in the back of my mind )

We did not know what to expect from this disorder. We had concerns that his brain might have been damaged from his initial presentation and had read that there might be several challenges ahead in regards to his mental development.  We shared our fears with family and friends but tried to remain strong and stoic with each other. There did not seem to be a need to worry too much about what lay too far ahead when the first challenge was a long trip home with a baby that we barely knew…with needs that we did not quite understand.

Earlier in our stay a doctor casually mentioned that she knew of only one other family that had a child with Citrullinemia in Western Maryland (near Frederick) and offered to set up a meeting with that family "…somewhere down the road when you are ready"  The vague "when you are ready" set worry again into my head that perhaps what we would see with this yet-unknown child was something that we were not mentally prepared to deal with yet.  Phrases like "enjoy this honeymooon phase" were tossed at us implying that we might have a few good months until the proverbial manure-hits-the-fan events begin to occur…we just wanted to leave the hospital and hole ourselves up in our house. Avoiding germs, avoiding people and filling each moment of silence with whispered prayers of thanks and "if it's not too much to ask Lord" requests. 

 A few hours before we were to be sprung into our new life adventure the nutritionist came in the room and said, " The family that I told you about, from out your way? Well. they are here for clinic and would like to meet you."

To say that I was not prepared would be an understatement…to remark that I would have rather hid in the bathroom then face my future reflected in this 4-year old boy would be more honest. I was scared…and the minutes that it took for the message to be relayed that we were willing to say "hello" felt like a lifetime. I did not know what might walk through the door…would the little boy even be able to walk at all? 

When the family walked in the door my eyes immediately searched for the child. He then walked in behind his mom and dad, holding the hand of the woman that had helped him nutritionally for his entire life and to see him walking, smiling, instantly becoming bashful and hiding behind his daddy's legs made my heart soar.  THIS, my friends, was a normal child. A gloriously handsome perfect little man that was exactly the child that I dreamt for Corrigan to be. The child that I was so unsure I would ever have…that instant…that moment the I saw him sealed the hole in my soul that had formed so many weeks before.  I was filled with a comfort and hope that I previously felt that I would never feel again. 

I felt awkward around his mother. I felt uneducated and naive…I could not think of the right questions to ask and I could see that she wanted to help.  There were so many things that I wanted to ask but my mind went blank because I was distracted by the beautiful normalcy of this four-year old boy.

Phone numbers and email addresses were exchanged and we went our separate ways. In the following days I forgot about the contact information tucked away in my purse and focused on learning how to be the mother of a newborn again. After a week or so of mind-numbing sleeplessness and hours and hours of feeding,burping and changing I thought about emailing her and then talked myself out of it for fear of being a burden. For fear of asking questions that she might not want to answer…

…and then one day I opened up my email to a note from M*.  She was wondering about us, how we were doing…did we have any questions or concerns…and it opened the floodgates. I replied asking a few simple questions that she answered in wonderful detail. She even answered questions that I had not thought to ask…perhaps sensing my reluctance…and offering to lend an ear at anytime. Anything I needed, no matter the hour…and she meant it.

Over the past few months I have spent time getting to know her better. Learning about her wonderful family, the ups and downs of her experiences with UCD and realizing that without much effort I had made a friend. My life had become richer and more blessed, again, through this experience with Citrullinemia. At the moment that I needed it most, God placed M and her family in the same hallway that we were…He knew that what I needed most was to see the potential of my child…through M's little man. He gave me hope and He gave me a friend…I did not even know that I needed another…but now, I cannot imagine not having her there.

There have been so many blessings in all of this. So many needs have been met without having to even ask…so many people that once stood on the sidelines of my life have become integral support systems…so many times I stand in amazement of how God knows what I need, He knows what I can do without and He gives me strength through the strength of others.

Thank you M for taking me under your wing. Thank you for allowing my family into your family's life. May God continue to bless you with exactly what you need. He never gets it wrong.

 

* I have not used M's name here out of respect for her privacy and because I did not ask her permission to use her name in this post.

 

 

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