"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Saturday, May 2, 2009

Heart Wide Open

It was one year ago that Marissa was hospitalized with her second aspiration pneumonia.  I had started feeling pretty low about Marissa's situation.  I was tired of her being sick.  I was tired of her needing the trach.  I was tired of her needing the g-tube.  I was tired of not being able to feed her by mouth safely.  

More on this time in my life later.

We brought Marissa home at the beginning of the summer in 2007.  She was so new, this new life was so new, that we pretty much secluded ourselves and got down to the business of learning about each other and just being a family.  By the time I felt comfortable with who my daughter was and what her boundaries were, as far as venturing into the outside world, it was Fall and "respiratory season", a big no-no time for socializing kids with airway/immune system issues.  So the isolation continued.  Old friends stopped by or called every now and then, but I pretty much hermitted (yes, I know that's not a word) Marissa and myself away for the rest of the winter.  

Over this period of time, I got used to being the primary caregiver for Marissa.  I got used to doing things on my own, handling the "business side" of this new life on my own, being by myself with her.  I realize now that I got too comfortable.  I got too comfortable not being around other people.  I am a people person.  I enjoy interacting with others.   

In a way, I got too uncomfortable as well.  I got uncomfortable with the fact that the outside world would see my precious daughter as "different"  As spring 2008 approached, I knew I would have to get Marissa out and about to meet new people, kids her age, "special" or not.  I knew there were others out there like us, I just didn't feel like reaching out.  For some reason, I started to buy in to the whole "we are different from others" bit.  It's hard to explain, but please don't think that I was ashamed of her or embarrassed by her.  Quite the opposite.  I was, and always will be, so proud of her.  I am amazed at what she has accomplished in her short life.  But for some reason, still unknown by me today, I got used to only talking about Marissa to family members and doctors.  I got used to not knowing anyone else who was walking this same road.  Bad for me, bad for Marissa.

Jump back to this time last year when she was hospitalized.  The only resource I regularly tapped to get a grip on how to handle this special life was the tracheostomy.com message boards.  This website has been an invaluable source of information to me ever since I first heard the word "tracheostomy" in the NICU.  I would cruise the topics on the message board and read all about what other parents of trach kids were going through.  I felt somewhat connected, even though I never commented.

I was sitting in Marissa's hospital room with Jeremy's laptop and looking in on the message boards.  I came across a post from a mom here in Colorado.  She was discussing her home nursing issues and I noticed at the end of her post, she listed a blog.  Now, I really didn't understand at that point what a blog was.  I had heard the term before, but just didn't get it. I clicked on the link to her blog and started reading.  It didn't take me long to figure out that her daughter was around the same age as Marissa.  She had a trach and was on a ventilator.  I read a little further and realized that this family had just brought their sweet little girl home for good three weeks prior to the posts I was reading!  At 14 months of age!!!!

Here I was, sitting by Marissa's hospital bed, moping and feeling sorry for her and myself. Here I was, the mother of a beautiful little girl with special needs, isolating myself and her for no good reason  Here I was, the mother of a baby who spent 2 1/2 months in the hospital after she was born and there was a family close by whose little girl had only known life outside of the hospital for 3 weeks of her 14 months of life!!!  I couldn't believe how self-absorbed I had become!

It was Jeremy's turn to stay the night with Marissa, so I said my goodbyes for the evening and headed home.  I could not get this little girl or her family out of my head.  Even though I was exhausted and should have laid down to rest, I spent the next three hours reading her blog from the beginning.  As I read, I was transported back to those first two and a half months of Marissa's life in the NICU.  I understood all the medical terms this mother was writing about. I cried when I read that her little one had a bad day.  I rejoiced when I read that her little one had a good day.  All those emotions were suddenly brought back to me full force.  

I  felt an automatic kinship with this mommy.  We had walked a similar journey with our little ones, hers being a much rockier and longer path.  Different in many ways, but still the same.  I found out that we had some other things in common too.  Silly things like our fervent love for the Broncos.  I decided that I needed to meet this woman and her daughter.  We had too much in common not to meet.  So I carefully crafted a note to put in the comment section of her blog, one that would hopefully not make me sound like a crazy stalker.  I submitted my comment and waited.  A few weeks later, she e-mailed me and we started to get to know each other through e-mails.  Because of crazy schedules and our kid's illnesses, we did not get to meet until the beginning of August.  This meeting was our first Trach Kids meeting and it was amazing.  I posted about it here.

Through this awesome mama, I came to a realization that isolation was not the way to go.  I started reading other blogs of special needs kids and started this blog at the end of June.  I realized there was a whole world out there that I had been missing out on.  Now, I have several IRL (in real life) friends who I have so much in common with.  I also have many "blog friends" that I know would be IRL friends if we just lived closer.  I feel more connected than ever.  And now that it is spring again, Marissa will benefit from the relationships as well.  I am privileged to be able to jump for joy when one of our kiddos accomplishes something great.  I am honored to be able to pray for and hold the hands of my friends when they are not doing well.   I feel my heart is wide open, the way it should be.  It feels good.

Now, don't get me wrong.  I still have plenty of days where I say "oh poor Marissa, oh poor me". They are just a lot fewer now and I get quickly brought down to earth by little angels such as Kayleigh in my previous post.  Or any of the other little angels I check in on every day.  

So, thank you Jen, for opening my eyes and my heart to this wonderful world of blogs and special needs kiddos.  I owe you so much for showing me a different perspective in this life, and for breaking me and Marissa out of our shell.  You, Brian and Faith are like family and I am so glad our paths crossed a year ago!   I hope I didn't embarrass you too much!!  ;)


John Gensic said...

Great post! We are walking that nervous line with Mikan right now-trying to figure out how much exposure is good and how much is too much. We are carefully getting out more and I hope it will become easier and easier. Anyway, I know exactly the feelings you are talking about.


Nana and PaPa said...

Hey Alicia,
I also am so glad that you found "new friends" through the blog. I know all too well how much of a people person you are...that part is very much like me and your dad. I quietly was concerned that you were becoming too introverted, not by conscious choice, but just by situation. I know the struggles you all have had through all of this, and I am SO grateful that you have built a network of New Friends, especially all of your "trach Moms" and your once a month socializing. Each one of you needs that! That is such a gift to each one of you. Thank God for your friends and family! Keep on expanding your circle of friends. They will continue to bless you and you will have the chance to bless them as well on their unusual journies. Love you all.
Nana & PaPa

Michelle said...

I'm glad you have been able to open your heart and I'm so glad I stalked your blog!! I wish we could be IRL friends, but I'll be grateful for our bloggy kinship!! You inspire me! Not to many people would befriend someone known as Nutjim...lol

The VW's said...

Beautifully written!

This support is so important and I'm so happy that you have this! Thanks for being such a great support to me! I am so thankful for blogland, having 'met' wonderful Mommas like you!!!

The round-the-worlders said...

We agree, wonderfully written, tho....we do have one comment that has not been expresses. When you are going to write a post like this one, PLEASE start out by saying "go get a box of tissues". You mentioned that for the other blog, but there are also tears of joy and pride shed when reading your accounts. (more often than not)I guess that means we should be smart enough to get the tissues before we see any of your blogs. We are happy that you have found a network of support that gives you strength. More importantly, we are extremely thankful that you have found an effective and powerful outlet for your ministry. For that is truly what you are doing. G-d bless you. You were never meant to be a lawyer, this is much more helpful to the world. We think everyone, not just special kids mamma's should read your blog.
Love, as always, Dad and Arnie

Colleen said...

I just started following your blog and I so appreciate your entry! Our special boy has a trach too which has slowly become our "new normal." I also was feeling isolated and then I started joining a trach group online and blogging and meeting other mom's who have special kiddos in my town. We're slowly taking our boy out into the world now that respiratory season is over, something I'm sure you can appreciate.(:

Faith said...

Awww...Alicia! Happy Friendship-a-versary! What a very touching post, and I am honored to be your friend. :)

The older I get the more I realize how much we need each other. I too, spent the year after Faith's birth very isolated. It wasn't until last spring, when I also stretched out of my cacoon and began to become connected.

What a privledge it has been to share a connection with you and your beauitful family. Your positive attitudes are inspiring, and hanging out w/you and the girls is always a blast.

Thank you for reminding me of how much we all need each other- now more than ever....

Ok am I starting to sound like a Hallmark card or what?

Lot's of love,
Jen & CO.

PS: I am also glad you started blogging...your words have reached many and inspire us all.

PSS: Not to mention being "Commenter of the Year" ;) You could show me a thing or too about that!

Anonymous said...

I love this post. In some ways it a curse to live in modern times. Internet and tv brings the risk of laziness, obesity and dont get me started on the media but there are also many blessings. Like the ability for Moms of special needs children to find support from other Moms in simular situations. I am so happy that you have that. I love your blog and the blogs of others who have struggled. I am thankful to be reminded not to take any luxery forgranted.