You have all heard me say, "This week we have our U of M appointments."  I spit it out like it's nothing.  But in reality, I have just rehearsed that line well enough to convince you it is no big deal.  This week in particular, I feel like my life with Maddox is a big test and U of M day is the exam because Maddox doesn't get analyzed.......  

I do.  

On the U of M day, it is all about what "I" have done.  Did "I" plug her ears every time she so much looked at water.  Have "I" been using the speech cards with her?  Do "I" wash her tear ducts with the special cloth?  Do "I" give her the DHA vitamins daily?  Did "I" get her to Speech, OT, and PT for school and outpatient?  Did "I" get her new foot braced fitted?  The list of things that "I" was supposed to do, get me so anxious and I often wonder, "What if Maddox fails one of the doctors tests and it's my fault?"  I dislike feeling as though I am being judged as a mom based on my daughter's performance.  

I also show up to U of M angry.  Angry that I even have to be doing this.  Angry that my mom came to visit and instead of playing at the beach, I have to haul her to U of M to be my assistant.    Angry that the money I would have saved for a vacation is spent on hotels and food for doctors appointments.  Angry that I have to fill out redundant paperwork about her health.  With all the technology and computer systems, you would hope that gender, birthday, medical diagnosis, hand dominance, age of mother at birth, could be locked into the system by now.  Heck, the government probably knows this information!  (I just couldn't pass that up.)   

Also on this day, I feel sad.  Sad that my daughter has to be touched, prodded, poked, and quizzed only to hear the soft words, "She's reaching her full potential."  Sometimes I just want to shout back, "Do you know how tall a sunflower will grow BEFORE you plant it?  Because seriously, how can you determine a person has reached their full potential when they are only a CHILD?"   

I feel overwhelmed.  I can't sleep because I wonder if I have all the addressed typed into he GPS correct because I don't want to miss any of these fully booked appointments.  Our schedule starts at 8:00 on Tuesday at the Kellogg Eye Center with the Pediatric Opthamologist.  At 10:20 we drive to another part of town to the Physical Medicine and Rehabilitation doc.   At 1:00 we head to Mott's Children's hospital for the hearing test and at 2:00 we see the Otolaryengologst.  The next day we drive across town again to see the Pediatric Neurologist for a 3.5 hour appointment.  Thank goodness we just saw the cardiologist or he would have been on this roll call too.  

And what happened to the basic medical things like well baby appointments and shots?  Well, those are long gone, low priority, and on the back burner.  We are so far behind on them it is not even funny.  After spending so much time at the doctors, thinking about scheduling one appointment more puts me over the edge.    

So, on the eve of U of M day, I am feeling tested, angry, sad, and overwhelmed.  

Don't feel bad though, in 48 hours it will all be over (and I'll be able to breathe for six months until we do it again in December)!  Check back in a few days, for an update on 'my' exam scores!! 

Yes we have two children 19 months apart and there are so many reasons why we decided to bring MacGregor into this world.

The night Maddox was born I stood in the corner of the hospital room sobbing wondering what to do with my life.  All I wanted was to leave Maddox in the hospital, pack my things, go home, pretend this didn’t happen and simply start over.  It was that instant in the dark corner that I knew I wasn’t going to be whole until I held a ‘healthy” baby.

Every minute that ticked by after Maddox’s first year with us, I was consumed with getting pregnant.  I was torn between nursing Maddox like a good mom or stopping so that my body would return to normal and we could start trying again.  Finally, when Maddox was 11 months old I did quit and my body resumed instantly.  It had taken one year to get pregnant with her so naturally I thought it would take some time before we conceived again.  6 weeks later we received a positive pregnancy test.  I was excited but knew deep down that the stress of carrying this baby would take its toll.  What would I do if our first doctor was right, what if we genetically couldn’t create a normal child?  After many, many tests and ultrasounds, everybody was convinced that this baby was fine - but me.  It wasn’t until MacGregor was placed on my stomach that I felt the weight lift.  I locked eyes with the midwife for confirmation.  She smiled, and I knew things were good.

Other than my own craving for normality, why else was MacGregor needed?  The obvious is that someday Scott and I won’t be around to care for Maddox and we needed to be sure she would have family to watch over her.  The question that lingers is do we put this sole responsibility on one sibling, one that never ever asked for this burden?  Or do we have two kids, who would be able to split holidays and share responsibility?   I often wonder if my kids ever secretly blame me for giving them this lifelong responsibility?

Another reason for having MacGregor is larger than life itself.  His cord and tissue was sent to a secure cryogenic location and will be stored in the event that Maddox develop a blood or tissue disease (and hey, we’ve hit all the odds so far so I wasn’t ruling this one out).  With the trending positive outcomes in stem cell treatment, we just couldn’t chance not having this resource available to Maddox.

Before Maddox was born we had planned on spacing our kids apart in age but research was saying that peer to peer support is the number one most effective intervention.  Which meant, we needed to have a peer for Maddox and thus became MacGregor.  His unspoken job was to teach Maddox to crawl, walk, climb, run, talk, drink from a cup, use a fork, climb a slide, and the list goes on. 

I often wonder if we made the right decision but today, I shot this video of the two kids and my fears were eased.  There is so much peer to peer support in this video I can’t stand it!!

Father's Day was filled with travel and fun.  We spent some time with the grandparents, cousins, and some good friends.  Had an awesome slumber party in which the kids slept great!!  Sunday was filled with travel, errands, and housework but we were able to take a moment to enjoy a cold one and read a few pages of a book while the kids played in the sandbox.  Also enjoyed popcorn, ice cream, and a family movie..  As Scott was falling asleep, I remembered I had not given him his card yet.  Darn near had to wake him back up so he could read it.

Thank you all for waiting so patiently while Maddox's site was rebuilt.  There won't be many posts from year two to three, but I assure you that you will be able to read all about it as a lot has developed.  I am in the process of writing a book that will be published by Penguin Group/Author House.  Often times grief is discussed in terms of loss, but not in terms of what is gained and how cope with something you really didn't anticipate.  The book will cover the first three years of our lives in relation to the grief I experienced.  The book is designed for new parents learning to cope and will have ideas and strategies provided by a psychologist.  At the end of each chapter, I share our personal story of healing.