Monday, May 13, 2013


My son turned two years old over a month ago. It has absolutely been the longest two years of my life. Even before his arrival, he was making life difficult. The night of his birth, he gave me a glimpse of what life would be like. 

With my previous four hospital deliveries, the newborn nursery wasn't a "service" I was interested in. I wanted to hold in my arms the precious little bundle I'd carried in my womb for so long. With James, it was, unfortunately, no longer available - the hospital where I delivered had gone to an all "rooming in" policy, meaning that unless Mama was really sick or had just going through a surgical delivery, Baby stayed with his mama.

After a very long final stage of pregnancy resulting in extreme exhaustion, and a very intense labor, a 10lb 10oz, almost 2 ft long baby arrived. The nurse said JJ was so difficult to deliver that if I'd had an epidural, he would have been delivered by c-section! Because of complications with the delivery, JJ was whisked away by the NICU team and I was so tired, I barely even noticed. Hearing his first cry a few minutes later gave me the assurance that he was alive. No one seemed overly concerned, so I was pretty confident he had all his fingers and toes. Beyond that, I didn't have the energy to care.

When the nurse brought my precious (not so) little baby and laid him in my arms, I needed help to hold him - I was that weak. Honestly, I remember very few details of that evening, which is probably better. But I do remember, after we'd been moved to the "Mother-Baby" side of the maternity floor, how desperately I wanted sleep and how uncooperative my son was. Finally, I woke Chris up (why is it dads can fall asleep so easily after a baby arrives?!) so he could take care of JJ while I got some sleep!

The next seven weeks were spent in frustration and desperation, trying to figure out how to help my sweet little man quit crying and for both of us get some sleep. It took almost two months because, as a mother of many, I knew babies cry. But, when when we finally went to the doctor, it turns out he wasn't just crying! He was suffering. 

The doctor was great. He immediately assured me that it was wise to bring my son in, ordered a variety tests, and prescribed a couple of very helpful medications. As it turned out, JJ had very severe reflux, so much so that the radiologist commented on it during one of the tests. 

Thus began a very frustrating and exhausting journey, that continues today. And as a result, I missed out on all the fun parts of having a new baby. It wasn't fun, he wasn't cute, and we didn't treasure moments. JJ cried almost constantly, unless he was sleeping, which didn't happen nearly often enough. The car caused particular distress, so we didn't drive him anywhere he didn't need to go for months, which meant we didn't do anything as a family, for months. The baby swing was torture; he screamed until we took him out. One of my daughters discovered a trick to getting him to go to sleep, so we swaddled him, for eight months! Even so, he had to held for any quality sleep. Actually, that is still true.

It didn't really occur to me that JJ was missing milestones until he was about six months old, and he wasn't doing anything he was supposed to be! We figured it was because we held him all the time, due to his reflux and sleeping issues. The specialist informed us that it wasn't due to being held all the time; it was due to "hypostatic encepholopathy" or Cerebral Palsy, low muscle tone (which affects EVERYTHING), and right-sided weakness. The physical therapist also noted general low muscle tone and issues with "proprioception." More diagnoses, more visits with specialists. 

Added to this confusing and very overwhelming mix was frequent illness. JJ was hospitalized with hypothermia secondary to immune insufficiency (though he does not appear to have an actual immune deficiency), treated for pneumonia twice (the first time at two and a half  months), on antibiotics eleven times and hospitalized for the removal of his adenoids, all before he was two. Between visits to doctors and therapists, and visits from preschool teachers,it was crazy. 

Now that JJ is two, and very much NOT a baby (he weighs 36 pounds), I am realizing just how much we've missed. And, I'm disappointed. Disappointed that rolling over was an exercise, that crawling was a task, that walking took months of practice. I'm disappointed that I didn't get to watch my precious little baby sleep in his cradle or rest quietly in my arms. I'm disappointed that I have missed memories of my other children over the last two years; that is time I can never get back.

Life is not over, however, and I can still make memories! So, amidst the disappointment and frustration is a firm resolve to live life differently based on what I've learned, and to figure out how to make life an event instead of just a task. That is, by itself, a worthwhile lesson to learn. 


Susan Evans said...

I just cried when I read this because I can feel your pain. Sometimes life seems more than we can handle. You enjoyed it as much as was humanly possible. Life always gets better at some point.

Mama Marchauna said...

Thank you, Susan. You know what some of my journey has been like. God is still good, though, isn't He. Knowing we can trust Him makes a huge difference, too. Thank you for your friendship and prayers.