This is not maternity leave

When I had my son I was lucky enough to have saved up enough leave to take off three months to be with him.  During that maternity leave I learned how to be a mother.  I hardly slept because I was either nursing or changing diapers or watching him sleep to make sure he was breathing.  I took him to his doctor appointments.  We went shopping, to the movies, out for dinner and we hung out at the pool.  It was an enjoyable time bonding with my new baby.  That is maternity leave.

What I am doing now is not maternity leave.  Since my daughter has been home, we have had so many medical appointments I have lost track.  Each week we have had doctor appointments or testing or visits by our home nurse or PT.  This week we had our follow up to her hearing test which she failed in the hospital (she failed again so we have another test scheduled for later this month).  We had an abdominal sonogram to check on her organs which they have been telling us were not in the "normal" placement (turned out all organs are right where they are supposed to be).  We had our visit with the home nurse (one more visit to go).  And we will have our PT appointment later this week.  Also, I had an appointment to get my flu shot and my TDAP to make sure I don't get myself or my baby sick.  I also have follow up blood work this week since my last lab work at Hopkins indicated very low iron levels which are apparently concerning now.  This is a typical week for us.

Regular baby bonding things like feedings are also more complicated this time around. We have to give her two feedings of extra calorie supplements and two feedings of iron supplements.  Since she is a preemie she sleeps all the time so I have to actually wake her to feed her (no, this is not wonderful, she needs to eat and letting her sleep longer is not an option) and due to her GI issues she is very gassy and has a more difficult time feeding than my son did not to mention the special preemie formula she is taking.

Yes, I get cuddle time and we are definitely bonding; however, it is not the same.  I have not been able to enjoy taking her out to show her off like all mothers want to do.  For the most part, we are on lock down at home to keep her from getting sick or sitting in doctor offices surrounded by sick people (go figure).

I am not writing this as a complaint about being home with her.  I am grateful she is such a fighter and that she has such wonderful health care providers and our insurance is awesome. I don't even mind sitting in my living room for hours watching her sleep and catching up on my "stories".  What bothers me is the misconception that this is somehow an enjoyable situation like I am on vacation or something.  Yes, I am glad I am able to be here for her when she needs me.  There is no way I could be at all of these appointments if I was working.  BUT, I would trade this in and return to work in a heart beat if she could have been born a healthy full-term baby who only required the routine doctor visits.  I would trade it all in to not hear comments like "well being stuck at home is better than being stuck in the NICU isn't it?" in response to my saying I would love to be able to get out even if just walking around the mall or having coffee at Starbucks.  YES, it is better to be at home than in the NICU (if you had been in the NICU yourself you would not have said this so I am assuming you know thing about what you are saying) but both options are not optimal.  Please do not make me feel like a POS parent for wanting for normalcy.  On the few occasions we have taken her out to run errands, people have commented about how surprising it was we took her out.  Weren't we afraid she would get sick?  Bad Parents!

My message to the haters who are jealous of my extended leave would be "don't worry, I am not enjoying myself as much as you think I am." And to the people who are concerned I am not making the best parenting decisions, "please stop worrying because she is my child, not yours."  There is not a human being on this planet more concerned with her well-being than I am (except my husband).

This is not maternity leave or a paid vacation.  This is leave to care for my baby who has special medical needs.  I am making the most of the situation; turning lemons into lemonade.

A Cruel Mystery

The Lupus Foundation of America started a new educational campaign for Lupus awareness called The Cruel Mystery.  I am new to this disease and I admit I had heard of Lupus but I never cared enough to look into what Lupus actually is.  Below is a link to the new campaign website and to lupus.org.  There are a lot of super smart people out there trying to find a cure.  Please take a few minutes to read about the research being done and ways you can help.

Lupus is a cruel mystery.


It’s one of the cruelest, most mysterious diseases on earth. Lupus strikes without warning, has unpredictable, sometimes fatal effects, lasts a lifetime, and has no known cause and no known cure.

There’s more to lupus than meets the eye; It is difficult to diagnose, hard to live with, and a challenge to treat. Lupus is hidden from view because people often times may not look sick. It is more pervasive than people think, and strikes on a scale that the public does not realize.

The Lupus Foundation of America is embarking on a cross-country quest to solve the cruel mystery of lupus and end its devastating impact. We are going to communities across the nation to educate individuals with lupus, their families and their health care professionals, raise public awareness of lupus, and to urge Congress to increase support for lupus medical research. Join us in the fight to end lupus. Learn more about the “Help Us Solve the Cruel Mystery™ National Tour”.

I would love to attend the tour in Richmond, VA on 16 March 2013.  Maybe I will be home in Maryland  by then (more to come on the move from Texas to Maryland).

cruelmystery.org and What is the cruel mystery?

Today's Blessing:  Lupus.org and all of those responsible for the website.  I have learned so much from this site.  I am glad to have a trustworthy place to get my Lupus information.