Sunday, January 22, 2006

ROUGH DAY

Yesterday we had to say goodbye to yet another lil' boy in the ICU. Lane Clary, who turned 6 months old yesterday, also had his last day in his earthly body. He had experienced numerous complications with his intestines and liver and the doctors had basically tried everything. So rather than prolong his suffering, his parents had the opportunity to take him outside with the ventilator and wires removed and he was held in love as he passed away.

Learning of his death really hit me hard. This is the 7th child that we have had to say goodbye to since Max's birth. I literally fell to the floor and just cried and cried...for the loss of Lane, the loss of all the other lil' guys, the loss of innocence, the loss of a "normal" life.

Last night was rough too for me personally. I had a little "breakdown." While it is so wonderful to have Maxwell home, it can be incredibly draining (physically and emotionally) taking care of him with all of the machines, medications and monitoring. Being a single mom would be difficult enough...but being a single mom to a special needs child is simply overwhelming! I was about to throw the kangaroo pump out the window...I was sooo irritated.

Max was fussy and all I wanted to do was go to his room and rock him. But I couldn't. First I had to unplug everything, move all of his machines, untangle the many wires, and reattach everything. This is virtually impossible to do quickly while dealing with an upset baby. SO FRUSTRATING! Of course I am sooooo grateful that there are such machines so that we can be at home, but now I am just so wanting to live a more normal life (well as normal as it could possibly be in this bizarre divorce/new town/special needs situation!) and it is frustrating when I cannot do the simple "mom and baby" things without spending 30 minutes changing rooms.

Fortunately today's church service helped get me refocused on the positive and I am doing my best to accept that this is what it is and I truly am incredibly grateful to have Maxwell home and doing so well.

3 comments:

rebecca said...

Amy, I am so sorry to hear Max lost another friend. My heart goes out to the little boys family. I wish I was there in person to support you during your time of need. Please do not hesitate to call me for anything!

Happy 7 month birthday Max!!! I am so, so, so happy to hear and see what great progress you are making. Being home with mommy and the dogs is the best medicine for you.

Love,
Rebecca

Unknown said...

Dear Amy and Max: You don't know me..but I am a fellow 'Washingtonian'! I am also the mom of a now 15 year old boy who was very premature (who's twin brother died in utero). While I haven't had to deal with all the machines and operations that you have, I too have spent more hours than anyone should in the NICU! There were several things I learned during this time: 1) it's ok to be angry at not having the 'normal' baby experience. It's ok to feel cheated and its DEFINATELY ok to cry and have a meltdown! Like your friend said, you are detoxifying! smf 2) you NEED to have good help lined up so that you can recharge. Go to a movie while someone else snuggles that baby of yours! A recharged mommy is a better mommy!
Anyways. I saw your story on the news and I read your blog all the time. You make me laugh and cry and have renewed my faith in goodness. You are a beautiful gal and that Max is just too gorgeous!
Hang in there. You have people caring for you that you don't even know about!
Hugs

Unknown said...

Dear Amy and Max: You don't know me..but I am a fellow 'Washingtonian'! I am also the mom of a now 15 year old boy who was very premature (who's twin brother died in utero). While I haven't had to deal with all the machines and operations that you have, I too have spent more hours than anyone should in the NICU! There were several things I learned during this time: 1) it's ok to be angry at not having the 'normal' baby experience. It's ok to feel cheated and its DEFINATELY ok to cry and have a meltdown! Like your friend said, you are detoxifying! smf 2) you NEED to have good help lined up so that you can recharge. Go to a movie while someone else snuggles that baby of yours! A recharged mommy is a better mommy!
Anyways. I saw your story on the news and I read your blog all the time. You make me laugh and cry and have renewed my faith in goodness. You are a beautiful gal and that Max is just too gorgeous!
Hang in there. You have people caring for you that you don't even know about!
Hugs