26 August 2013

The best big brothers a little girl could have.

Brian and I are often asked, "how are the boys handling having a new sister?" So, I thought I'd share a few pictures we have taken of the way they interact with Avonlea. 

The boys are amazing with her.  I think they think she is like their puppy dog.  They love loving on her, fetching whatever she needs, replacing her pacifier when she cries and sharing her with others.  I haven't seen any jealousy from either boy so far.

Oliver really loves feeding her and talking with her.  He does a really great job. It's amazing how useful five year olds really are!

He also loves kissing her.  In fact, both boys kiss her all day long.  I laugh because I can often be heard saying, "yes you can kiss her," "ok, but you already kissed her," "you can kiss her in a few minutes," "yes, you can kiss her again in a second when I put her down," "go to bed, you can kiss her in the morning." Ha!

Of course, Avonlea loves being cared for.  If this girl grows up spoiled, it won't just be Brian and me to blame. :)

Oliver loves to talk to her.  I often hear him whispering gentle things to her.   Oliver said today, "Baby Avonlea, you are the sweetest girl in the whole world."

Bennett is amazing at putting Avonlea's pacifier in her mouth.  The other day I heard her crying but couldn't get to her until I washed my hands.  Before I had a chance to dry my hands she stopped crying.  When I went to find out why, I realized Bennett had come into the kitchen and without asking had grabbed her bottle off the counter and placed it in her mouth.  It melted my heart to see him tend to her need.  She was, indeed, hungry and was more than happy to accept a bottle from her three year old brother.

Bennett is so tender with the baby.  He always wants to know where she is and if he can hug her.  He also loves to talk about how pretty she is and how much he loves her.  Should Avonlea grow up ever wondering if she is beautiful or wanted, she need do nothing more than ask her brothers. :)

21 August 2013

Avonlea's Cystic Fibrosis Test Results

Last Friday, Brian and I learned that Avonlea's newborn screening came back:

Avonlea does not have Cystic Fibrosis!! 

We are beyond elated and consider the gift of a healthy baby as a huge HUGE blessing!

We are thankful to know Avonlea will not have to battle this awful disease.  Our hearts are full to know she will not feel the slow suffocating effects of Cystic Fibrosis and, God willing, will not know a shortened life expectancy.  

However, as relieved as we are, I have found this news quite bittersweet...

News that Avonlea does not suffer with Cystic Fibrosis has not been something I have been ready to scream from the rooftops, as I had expected I might want to do if it came back negative for CF.

In fact, there has been a part of me that has preferred to keep it quiet and internal.  I believe it is because I know that while our news is good, for so many of our friends who have gone on to have more children, they have not all received such fabulous news.

Many of our friends with more than one CF child have gotten the call letting them know their other child also has Cystic Fibrosis.  So, our news, while fantastic, serves to remind me that good health is not an entitlement.  Good health is a gift.

My feelings towards Avonlea's test results are also tempered by the fact that, although his baby sister will not know what it's like to have Cystic Fibrosis, Bennett does not get the luxury of being CF free.  And, until there is a cure, there is nothing I, as his mother, can do about it.

Sure, it feels really good to know two of our children don't have to suffer from CF but it breaks my heart beyond measure to know that still one of our children does.

I have had to address this conflict within me - how can I fully celebrate Avonlea's good health when I can do nothing to take away the fact that Bennett's health is going only to deteriorate over time?  And is it right for me to rejoice at the news Avonlea is healthy when doing so almost seems to highlight the fact that Bennett is not?  Does celebrating Avonlea's healthy body place even more disappointment on the body Bennett was given?

I carefully shared this news with Bennett this weekend.  He and I were on my bed while I was cuddling Avonlea.  Bennett was in a playful mood, as usual, and was chatting about his baby sister.

I casually asked Bennett, "Bennett, does Avonlea have Cystic Fibrosis?"
Bennett shook his head no and then said, "I am the only one [in the family] who has Cystic Fibrosis."

But before I could say anything else, Bennett added, "I'm 'pecial."  (Bennett pronounces almost every word that begins with an s as though the s is silent.)  He added, "I'm 'pecial...I get to do 'pecial things."

I smiled and validated him, "yes, you are special.  And you do get to do special things, don't you?"
Our conversation ended right there.

It broke my heart to have to tell Bennett that even the baby sister who was just born doesn't have Cystic Fibrosis like him.  How lonely and abandoned I felt for him, and imagined he might also feel for himself.

But I what I saw in that moment was that Bennett doesn't necessarily see himself as being the un-lucky one.  Even at 3 years old, Bennett is learning how to see himself having Cystic Fibrosis as something of value.

His little innocent response, "I 'pecial" reminded me that, even in the light of Avonlea being born healthy, I don't have to feel sorry for Bennett.  God is taking care of Bennett, giving him what he needs every step of the way as he works through his own acceptance and understanding that he has Cystic Fibrosis.

This brief conversation with Bennett served to calm my motherly heart and reassure me that rejoicing in the good that has been given to one child does not take away from that which is not given to another.  God is present in both situations, in both joy and grief.

And so, this is my challenge as a mother - to embrace what God has given me, whether it be the gift of a child with Cystic Fibrosis or the gift of a baby girl who is healthy.

18 August 2013

Bennett's Brigade - Santa Cruz!?!

I haven't finished posting about this year's Bennett's Brigade CF Walks (partly because I have been distracted due to our new little addition) but also because...(drum roll, please!!)...


Bennett's Brigade is going "from sea to shining sea!"  

We started out the year with Bennett's Brigade in North Carolina... 

Now, we are ending the year with Bennett's Brigade in California!!

Wilmington, NC to Waco, Texas to St. Louis, Missouri to Santa Cruz, California

There is no distance too far to help find a cure for Bennett!!  

Thanks to my sorority sister and sweet friend, Kerry Struttman, who is gathering friends and coworkers and creating a team in Santa Cruz, California!  What a gift of love!!

Kerry (seen here with her hubby and baby Quentin) contacted me a few months ago letting me know she would love to create a Bennett's Brigade in her area.  Kerry is a cardiac nurse who wanted to help and knew she knew others who might like to help as well!

When I asked Kerry what moved her from just being a supporter to taking an active role in helping us find a cure for Bennett, here is what Kerry said:

"I really started following your blog awhile back and seeing what Bennett goes through everyday and how strong of a kid he is, I wanted to help not just him, but all the kids out there. You have been a huge inspiration to me and I want to help in anyway. One of my favorite picture of you was at the Cystic Fibrosis walk this past year, I think it was Mother's Day and you looked so cute. I also saw the picture of the St. Louis girls and thought it looked so fun, and getting the group together has been fun, and I know the day of it will be a blast."  

Brian and I are HUGELY touched that Kerry, who is pregnant with a second baby on the way, would reach out to her network of friends and coworkers to help our son.  How do you ever find words to communicate what it means to have someone do this for you, for your son, for your family, for your heart??

And Kerry isn't the only supporter of Bennett's Brigade in the Golden State.  Our dear friend and Kappa Delta sorority sister Keight also lives in California.  Keight (seen in the picture below with her adorable little ones) has been a huge supporter of Bennett's Brigade for several years and is joining forces with Kerry to participate in this year's CF Walk and Bennett's Brigade - Santa Cruz.

We are beyond touched that Kerry and Keight would do this for us even as they are half way across the United States!  And for each of those who have financially donated to support Bennett's Brigade - Santa Cruz's fundraising goal and to help us find a cure for Bennett, THANK YOU!!!

Click here to help Kerry reach her personal goal and support the Cystic Fibrosis Foundation:

16 August 2013

First Day of School 2013

The boys just started back to school this week.  

 Bennett (3 years old) just began the 3's Class.  

 Oliver (5 years old) just became a full-fledged kindergartener!

At the end of the day, when I asked the boys to give me their "high" and "low" of the day, Oliver said that everything was his "high."  I tried to get him to be more specific by asking him which he enjoyed doing more in kindergarten: playing or working?  Oliver's answer was "working!"  Of course. :)

Our little guy's "high" on the first day of school was getting to play with the trains in his classroom.
He said his "low" was "going home."  :)  Glad he enjoyed his day that much!

The boys have excellent teachers this year so Brian and I know they are going to have a wonderful year.  Bennett is being cared for by a staff that knows him and his Cystic Fibrosis well.  

This is really good since it turned out that within hours of his first day back at school, Bennett broke out in hives, an allergic reaction to something outside on the playground.  His teacher had to call me and together we decided to give him Benadryl to see if that I would help.  Fortunately it did.  But it made for an interesting first day of school for all of us!

I love this picture best of all the photos I took on the first day of school - mainly because it captures these two sweet brothers doing what they love to do most: making each other laugh. 

10 August 2013

Avonlea's First Visit to the Doctor

A few days after we left the hospital, Brian, Mumsy and I took Avonlea to her first Pediatrician appointment.  

Avonlea is SUCH a good baby.  She is peaceful and so easy going.  She hardly cried at all during her appointment.

Big girl!  Avonlea weighed 7lbs, 2oz at birth but dropped to 6lbs, 9oz while in the hospital waiting for my breastmilk to come in.  She has since gained back her birth weight and more.

Dr. K is our Pediatrician, whom we love.  She has been SO good to us and taken great care of Bennett through many of his CF-related issues.  I am so thankful to have her care for another one of our children.
We haven't heard back from the doctor with regard to Avonlea's Cystic Fibrosis test.  The doctor said that the test typically takes 2+ weeks.  However, if the test is "bad", the test results typically come back sooner.  So, the longer we go without word, the more confident we are that everything is normal.

The nurse offered to take a picture of us before we left to document Avonlea's first check up. :)

Avonlea received thumbs up for good health from her first doctor appointment.  Now, we just wait for final word about the Cystic Fibrosis test!

05 August 2013

Avonlea's First Bath

The day after we came home from the hospital, we decided to give Avonlea her first real bath.  Since my mom, Mumsy, gave Oliver his first bath, Brian and I asked her to do the same with Avonlea.  We invited the boys in to help, which they loved.

 ...although I think the boys were more interested in playing in the water than giving a bath to their new baby sister.

Sleepy baby.

Aunt Brooklyn looks on while Mumsy gets the bathwater ready.

The boys watch her get bathed.

Avonlea is a very easy going baby.  She hardly made a peep.

Curious brothers.

After Mumsy washed her body, she wrapped her in a towel and washed her hair.

One of the most special parts of this bath was the brush that was used.  This little brush is my newborn brush given to my mom when I came home from the hospital.  I hope this little brush can be used on the next generation.

Avonlea shows her curls.

Aunt Brooklyn (my sister and Avonlea's namesake) helps get her dressed.

Avonlea doesn't want her hair brushed.

And, oh the cries when it comes to placing her bow.

But once Avonlea is dressed and snuggled tightly in Mumsy's arms, she is quite happy.

Pretty girl, all clean and smelling baby-fresh.

Thanks Mumsy and Aunt Brook for giving Avonlea her first bath!!