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.

10 comments:

Rebecca S. said...

I know how difficult these times are for you, yet how rewarding they must be. It is times like this that I wish you were here in WV so all of your friends could help...each take a night. Every time I think I'm having a bad day or feeling pressure I think of the strength that you and Little Max have displayed and it makes me realize that God doesn't give you any situation that you cannont handle. Amy, tough as things are we all know you can handle it. That's what Mom's do.

Kerry said...

Amy,
It's normal, and it's OK to get frustrated and angry at the circumstances of your life. You are an amazing woman and an awesome mom to Max. But that doesn't mean it doesn't all catch up with you now and then. I'm glad church spoke to you this morning. Isn't it amazing? Sometimes I could swear the sermon was written specifically for me!

God bless you and Max,

Kerry

Ruthie said...

Amy you deserve a breakdown more than anyone I know. I agree with Rebecca S. though when she said she wished you were here in WV. Its hard to be just be supportive of you via e-mail and cards etc. because we all wish we could be there to wipe the tears and make you laugh instead. Whatever you need to do to get through those rough moments do it. You are wonderful and Max is wonderful.

Chris said...

Hang in there Amy. You're an inspiration to us all!

Anara said...

You are so amazing to have made it
this long and not have broken down
a 100 times!!! Those moments are
important to go through so that we
can renew our selves and our faith
in Heavenly Father. That may seem
harsh of me to say, but I truly
believe we need to give in to our
emotions from time to time. You
know that crying is Very good for
our bodies, yes, we detoxify
our bodies every time we cry. So
now when I cry I tell people not to
worrie, I'm just detoxifing....
I also feel that at those times I have my best heart to heart talks
with Heavenly Father...
You are doing an incredible job with Max. No one else could have been his Mommy but you, he's very special and so God gave him to a very special Mommy.
I am so sorry to hear that another
little one has lost the fight, but he must have been need back in Heaven to do work there. I will pray for his parents.
I LOVE YOU TWO!!!!!!! Lots of hugs
and kisses for Maxi from his
Auntie Anara XOXOXOXOX

Tricia Clary said...

Amy,
WE love you. Do not worry about us. WE will make it through. Hold tight to Max.
One thing I learned with Kyle is that it is Ok to get mad and upset, it is Ok to get someone to watch Max so you can have a little "Amy-time". And, it is OK to have a pitty party, whenever you need one...you deserve it.

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

Jaye 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

Jaye 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

Fred&LeighAnn said...

Stay strong and keep the faith Amy. We know you will - you (and Max) have that WV toughness inside...
WV Max is looking forward to meeting Washington state Max someday soon.
You're a good mother and you stay in our prayers.