Tuesday, July 31, 2012

I have it all... but...

Ronan snuggling with his seahorse
I have it all.  I have a wonderful husband who enriches my life more than I could ever imagine.  I have an amazing son who has filled my heart more than I knew possible.  My family and extended family could not be more loving, supportive, and involved with our lives.  I have friends who still talk to me despite me ignoring them so often these past 11 months.  Somehow I've stumbled upon a great job with smart and supportive colleagues.  My dog is pretty wonderful as long as you aren't on a skateboard, and we live in this beautiful city of Santa Monica.  I could go on and on.

Even with all these things, I still have this nagging feeling of, is this really what I want?  I often feel that I spread so much of myself out that I don't devote enough time to any area.  I used to spend a lot more time at work, enough that I was happy with what I was accomplishing.  Now I am always rushed to be home with my family, or distracted by submitting the next insurance claim.  I'm fielding a call from a doctor, or I'm trying to track down a therapist.  Then I'm trying to leave to see Ronan.  Ronan is an early bedtime kid - he's ready for bed by 630 or 7pm.  That's when I used to get home from work!  Don't get me wrong, I work hard, but I just have that nagging feeling that if I only had a little more time, I could do better, or at least get more done.  It's the perfectionist in me, I suppose.

Already a big boy!
When I get home at night, I'm still thinking about all the open items from work, or things I couldn't get finished up during the day for Ronan.  It's a restless feeling that distracts me from devoting the time I have at home to my most important "work".  My husband and I have a new challenge, which has helped to relieve some of this stress...  that is to truly focus at work.  Work smart.  Leave all Ronan calls, follow ups, and claims for the evening.  Then, leave work at work.  Come home and just be with each other, and enjoy these times with Ronan.  There's time to think about work and finish up things after Ronan goes to bed.  I've been trying this now for a few weeks, and it has really been helpful.  I'm a bit behind on my insurance claims, but I feel much better about work.

But all of this begs the question, should I even be spreading myself this thin?  Isn't my little boy special enough to get his momma all the time?  Am I OK with our nanny, who is absolutely wonderful, spending all this time with Ronan when I am at work?  All the questions women have been asking since, well, forever.  What I think about though, is that I like my job.  I enjoy going to work.  My husband and my jobs allow us to give Ronan a great life, and all these things that will hopefully allow him to catch up and maximize his potential.  They give us the health insurance that allows us to see the best doctors, and to see 2 or 3 of them in each area.  It's the ultimate trade-off, no?  Is time with momma worth more than the increase in lifestyle, access to therapists, wonderful health insurance, and my personal fulfillment?  Honestly, I have no idea.  Some days I think I am crazy for leaving Ronan for a single second, but other days the other factors weigh heavily in that equation.  Like the other day when my insurance company called to tell me our e-stim therapy and machine rental would not be covered by our insurance...  I still think there's a chance I can appeal and get coverage, but we will keep and use that machine as long as we are seeing results, despite the costs.  And it was nice to not worry about that added expense being so prohibitive that we wouldn't be able to do something that might impact his life in a positive way.

I live for weekends like this past one, even though Ronan was pretty cranky from a new tooth coming in.  We relaxed with each other.  Enjoyed each others company.  We all went for a run together, we went to the beach.  We watched countless hours of the Olympics, and I of course cried during those darn P&G "Thank You Mom" commercials.  It counteracts the structure of my weekdays, it gives me balance.  While seemingly every moment of my weekdays are planned, booked, and double booked, my weekends are free and open, like those lazy summer days when you were little.  And I know all days wouldn't be like weekends if I were staying home.  I am sure weekdays would have their structure, especially with Ronan's appointments and therapists.  I think I need both in my life - the structure and the breezy, carefree days.

Which begs the ultimate question, does that make me a bad mom?

Sunday, July 29, 2012

Heaven's Very Special Child

When I started this journey with Ronan, a few people shared some thoughtful poems and encouraging articles.  Believe me, I needed all of the encouragement I could get!  There were two, in particular, that struck a chord with me for various reasons.  Heaven's Very Special Child was one of those.  

I think that every special need parent has times, as much as they don't want to admit it, when they think, why me?  Why does my child have to struggle?  Why do I have to give my child's life over to a team of doctors for open heart surgery?  Why can't it be me instead?  We probably don't admit that we ask those questions, and we definitely don't admit the ones that are more selfish...  why can't my child be healthy like everyone else's?  Why does that family get a healthy child?  I'm ashamed to admit it, but I have had those feelings too.  And I don't think the thoughts about if there would have been anything I could have done differently, either prior to or during pregnancy, will go away either.   

I wish I knew who to attribute this poem to, but unfortunately I don't.  I have read this countless times when I start going down the path of asking all those questions.  It's a reminder that each of our precious children are chosen for us, that we are entrusted to do whatever we can to enrich their lives.  To provide for them, and to love them unconditionally, whether special needs or not. 


A meeting was held quite far from Earth
It was time again for another birth.
Said the Angels to the Lord above –
“This special child will need much love.
“His progress may be very slow
“Accomplishment he may not show.
“And he'll require extra care
“From the folks he meets down there.

“He may not run or laugh or play
“His thoughts may seem quite far away
“So many times he will be labeled
“'different,' 'helpless' and disabled.
“So, let's be careful where he's sent.
“We want his life to be content.

“Please, Lord, find the parents who
“Will do a special job for you.
“They will not realize right away
“The leading role they are asked to play.
“But with this child sent from above
“Comes stronger faith, and richer love.

“And soon they'll know the privilege given
“In caring for their gift from heaven.
“Their precious charge, so meek and mild
“Is heaven's very special child.”

Thursday, July 26, 2012

Hanging out at the eye doctor

I put him in one of those little chairs while we were waiting for his eyes to dilate. He did great sitting in it!

Thursday, July 19, 2012

My Littlest Hero

Ronan is my littlest hero.  He is brave.  He is patient.  He is easy going despite all the things he has to do.  He never gives up.  He is so many things that I hope I can be. 

Sometimes I find it hard to believe he is just 11 months old because he has taught me so much and inspired me to be a better person.

Inspiration Through Art is a wonderful organization that provides free services and programs to children who have a life threatening illness, or an illness that significantly impact his or her life.  Ronan is a "littlest hero", and will get a free photo shoot.  It may seem like a small thing, but it lifts my heart to feel like my little Ronan is special for something positive, not for his rare syndrome.  I am so appreciative to this organization, and to the photographer we have been matched with, for giving us a way to show Ronan he is special in a positive way, and that he is a "littlest hero".  

Tuesday, July 17, 2012

New Milestones!

Ronan has truly picked up the pace of his development.  I wanted to give everyone a brief update on what he is doing, and what we are working on with Ronan.  It is so unbelievable to watch his development take off.  Paul and I are so excited and proud of Ronan.  I'm sure that some of these milestones would be easily overlooked, but for a special little guy like Ronan, we have been dying to see them. 

First, Ronan has started "banging" things.  Right now he just holds one object and bangs it on a surface or even himself, but this is the precursor to banging two objects together.  This is a big milestone from a gross and fine motor standpoint, and frankly from a visual acuity standpoint for a little boy like Ronan. 

Second, Ronan is really starting to show his opinion about things.  If he's playing with something, he gets angry if you take it away.  If he can't get what he wants, there is a lot of whining involved.  Again, probably something that may get overlooked, but a big milestone from a social and language standpoint.  It shows that he's starting to have preferences, a social/emotional milestone.  From a language standpoint, it shows us he's trying to communicate by having different sounds or cries for different needs and wants. 
"Banging", a new milestone!

Third, Ronan is babbling with a lot of new consonants and vowels combinations.   This is likely on track with his adjusted age, which is awesome!  Also with language, he is starting to connect some works with objects/actions.  Here's video of him after he learned to high five.  We are reinforcing the phrase, "high five" with a particular sign (holding up a hand). 

Ronan is also getting really close to clapping.  If you clap, he will bring his hands down to either side of yours.  He is still just sitting for maybe 30 seconds at most, but he's doing better at self correction.  Last week was the first time our PT would even speculate that Ronan might crawl and walk, which was a huge day in the Marsolan household!

Our little boy is also not so little - he is over 17 pounds now.  I'm guessing from our growth chart that he's getting close to 4th or 5th percentile.  I'm pretty excited to see where he is at his next pediatrician appointment. 

Paul and I are working super hard on getting him to hold himself up when on his tummy.  Ronan is also practicing sitting a lot, we are hoping to get him up to a minute or so of sitting soon.  I am also hoping that he will be clapping soon, and that he will be signing!

Sunday, July 15, 2012

Hanging out at the beach

Ronan enjoying the shade

Sommers and Paul

Thank You!

Once Paul and I started to fully grasp what was going on with Ronan, and about his diagnosis, we immediately had support before we even asked for it.  We have been truly blessed with amazing family, extended family, and friends.  We have fabulous coworkers, partners, and bosses.  We found awesome doctors and therapists. 

I also sought out other means of support.  I’m a part of six different support groups.  Yes, you read that right, six groups.  Some are geared towards parents with children who are dealing with one aspect of Ronan’s diagnosis, like his heart or colobomas, others are specific to his syndrome or raising special needs children.  I have found a lot of comfort in being about to say things in a safe environment that maybe others would find ridiculous or simply out of the realm of understanding for them.  It is nice to say something and have someone say, that happened to me last week, or simply, I understand. I highly recommend support groups for anyone going through a difficult time, child related or not.  They have kept me sane. 

Aunt Colleen and Uncle Michael
What I have learned through these groups is that Paul and I are the lucky ones.  Some of these parents do not have parents who would hop on a plane in a second, or siblings who would do the same.  Many do not have mothers who would come out and care for their child when you needed them to.  After Ronan’s first heart procedure failed, I’m pretty sure we had half of America praying for him and thinking about him as he went in for open heart surgery. 

We had friends who basically picked up the other areas of our lives that we couldn’t handle.  I never had to worry about our dog, or even something as small as our mail. Friends visited and abided by our "scrub yourself down" policies.  People sent cards, gifts, flowers, food, you name it.  Even toys for our dog.  

Also amazing was what happened after Paul and I posted Ronan's video last week.  People started sharing it.  Then other people who we didn't even know shared it.  I was so proud to share Ronan's journey with so many people.  I was so proud that so many people cared about him.  Truly, I have learned an unbelievable amount from my son.  Never give up.  Never accept the confines of a diagnosis.  With hard work and some faith, so many things are possible, even things that doctors say won't or may not happen.  

I have no doubt in that whirlwind of Ronan’s first 6 months or so, I missed sending some thank you notes.  I missed calling people to tell them how much we appreciated the support.   I’m hoping that I can extend a heartfelt thank you here; I know it is not the same as a card or call, but the feeling behind it is the same.  Thank you.

Friday, July 13, 2012

Diagnosis: A definition?

I’m an engineer by degree, and spent about 5 years after college in the field.  I live by numbers.  I innately understand processes.  I feel better when things are organized, when items are in their place.  Ask my husband what the last thing was that I was super excited about that he did, and he will tell you it was when he consolidated the electronics on our dresser from a TV and about 7 or 8 other devices down to a TV and just one device.   What do I always agree to buy?  Anything that lets me put away things or simplifies items.  You get the picture.

I’m not alone in this; my husband exhibits many of the same preferences, although maybe in different areas.  When we started down this path to parenthood, we embraced this part of our personalities.  We took childbirth classes.  We organized our apartment.  We researched different sleep methods, pros and cons of vaccinations, and looked into childcare options.  What was one thing that we didn’t research?  Caring for a medically fragile child, raising a child with special needs. 

Again, I’m going to reiterate how I cringe when I say special needs.  I hate those words, that terminology.  My child is special, but not for his needs.  His needs are the same as any other child – food, sleep, stimulation, and most importantly love.  He just happens to have a few areas where he needs extra attention or help.  He is special for his strength of character, for his laid back personality despite being poked and prodded on a weekly basis.  Ronan is special because he is our son.

When Ronan was born and the diagnoses starting rolling in, Paul and I approached this same as we would any issue or problem – we researched the heck out of it.  While those learnings were valuable, I wish we would not have sought to immediately create these buckets, so to speak, and organize everything into those discrete buckets.  I wish we wouldn’t have made the kinds of leaps that we made when we first found out Ronan failed his hearing test – that he was deaf.  We spent a lot of time researching deaf culture, sign language, integrating a deaf child into a typical school, and an innumerable amount of facets about raising a deaf child.  I wish when we found out about his colobomas and how they may have affected his optic nerves; I wouldn’t have started down the path of Ronan being blind, and how to raise a child with massive visual impairments.  Apply this same vigor to his congenital heart defect, genetic diagnosis, facial palsy, or any other aspect of his health, and you get the picture.  I could go on and on.  While all this preparation and research was no doubt valuable when we started meeting with doctors, and then started meeting with teams of doctors, I wish I would have given Ronan a little more time to show us who he is. 

I’m not sure if I would have listened, but I wish someone would have said, take a breath.  Take a moment.  Just enjoy this moment with your baby.  Enjoy the baby noises, the cuddling, and the cooing.  Enjoy the way little babies grab onto your fingers.  Forget all these things, even if it’s for a half hour.  The internet will be waiting.  Your doctors will be willing to talk to you later.  Take a moment to get to know your baby.  Let your baby show you who he or she is.  Trust your instincts, even if you are a first time parent.  There were many times when I tried to take a step back, but I was terrified I would miss some window of opportunity to improve Ronan’s life, or miss some test that would give us more information, or miss talking to someone at the top of a particular field.  There were many times when I thought, I really don’t think Ronan is blind, or I really don’t think Ronan is deaf.  But I chalked it up to wishful thinking, and general inexperience.  If I could tell a new parent facing these same uncertainties anything, I would say two things:

Take a moment to enjoy your baby.

Trust your instincts, you know your baby more than anyone else, and that is more valuable than any number of years of medical school and training.  Don’t forget that.

I made a video about Ronan’s first 10 months.  Looking back, it is unbelievable what this little tiny baby has had to go through, and how much he has grown.  Last time we were at the pediatrician, her exact words were that Ronan’s development has “exploded.”  Those are days when I could not be more proud.  Everyone kept telling us Ronan was special, but it was with that look of pity, or that tone of voice that seemed to say, I am sorry.  What they didn’t realize was that Ronan is special, but not for the reasons they think.  He is so special for showing us that he’s not a diagnosis; he’s special because of his strength, determination, and love.