Thursday, April 18, 2013

Joy with just a sprinkling of sad...

My house is finally quiet tonight after a full day celebrating the threesome that made me a mommy. Sixteen years. 16. How is it even possible?

Today was packed with celebration. We woke early for the big surprises before Dad had to be at work. We didn't stop celebrating all day (well, except for the hours in the middle where Mason had to have an MRI....but that is another story!) and we enjoyed every single minute.

And yet, as the house winds down, and the quiet settles around me, I can not help but ponder the emotion of the day. As so often is the case during our journey parenting triplets, this is a season where we looked for the balance to celebrate while gently grieving a bit inside.

We gave Mason and Claire a car. One. A single vehicle to share. They can not drive yet. They needed something smaller than Mom's accessible van that is challenging to maneuver; and something bigger than Dad's car that zoom zooms, to even begin the driving process. After today, they are set. :)

And pretty excited. 

And though today was about the joy -- and honestly, I felt full of joy at the significance of handing them keys, of seeing them behind the wheel and watching their faces as we discussed the plan for driving -- the decision to get the two of them a car was gut-wrenching, one Wade and I have discussed for years. Years.

At three, Claire, Mason and Benjamin all received tricycles for Christmas. We worked on pedaling for a long time. Claire would do circles pedaling around our great big patio; while Mason would work with all his might to get those blasted pedals to move; and dear content Benjamin would watch them from the comfort of his still, no-interest-in-making-it-move-tricycle.

Years would pass before Wade and I would have the strength to purchase Claire a bicycle with two wheels. The grief that her brothers could not join her for a ride was simply too much. When finally, at almost eight, the guilt won, we HAD to get the child a bike and let her learn to ride. We celebrated the sweet moment when she took her first training wheel-free ride while fighting back tears.

So we anticipated the car thing. We discussed it for years. We knew we could not put off driving simply to protect Benjamin. As soon as Mason showed an interest, Wade took him out for a test run. Could he drive? Could his feet flex correctly? Could his legs and arms work to do what they needed to do? Oh, what a relief when Mason had no problems catching on. 

But still. Our dear Benjamin can not drive a car. And though, my brave strong boy assures me that he has no interest in driving, my heart hurts that he doesn't get the choice.

But as has so often been the case, there is joy on the other side of this gentle grieving....for Benjamin may not have gotten a car, but he did get a special "Trip O' Benjamin" to Disneyland next month. And he thinks that tops a car every day!

We aren't going to Disneyland Paris....but he did receive this highly collectible book with his "reservation"!

And because I much prefer dwelling on the joys that follow the grieving to the grief itself -- I am reminded of a birthday celebration 12 years ago. 

Benjamin had his first orthopedic surgery at three. When he came to in the recovery room, Wade asked him if there was anything he wanted, dear boy said he wanted to go to Disney World. And so, we went to WDW for the triplets' fourth birthday.

At the time, Benjamin's favorite movie was Aladdin so we were thrilled to meet him on the first day of our visit. Aladdin was simply amazing with my three, sitting in the floor to hold Benjamin in his lap and spending a long long time with us. During the course of the visit, Benjamin told him that he really wanted an Aladdin's lamp, Aladdin told him that maybe the Genie would help him out. We assumed he was telling us to check the gift shops.

But when we returned to our hotel room that night, the room was full of Aladdin merchandise: oh there was a lamp for Benjamin, but also stuffed Genies for Mason and Claire along with several other trinkets AND a note from Aladdin asking us to sit in a special spot for the parade the next day.

Wade and I were uncomfortable with all the attention. Don't get me wrong, we were thrilled that the kids were having such an amazing time -- and that Benjamin had had an unforgettable experience with his favorite character. But we were still searching for our way with the diagnosis of Cerebral Palsy. We were trying to help the boys walk, and blend in, not STICK out, not draw attention to us, NOT make a big deal out of their differences. We flat out had no idea how to navigate the world of "disabilities" and there were no books teaching us what was the correct etiquette in dealing with this kind of attention.

But we went to the spot for the parade. When Aladdin's float came by, there he was waving and smiling at these three. His swordsmen came over to the kids, bent down and said "Oh, you are Aladdin's special friends! We have heard all about you!" Then one of the swordsman looked at me and asked us to meet Aladdin in Town Square after the parade. Wade and I assumed that is where Aladdin would be signing autographs or something. We already had that but we needed to thank him for the amazing toys -- the one piece of etiquette we DID know -- so we made our way to Town Square. But alas there was no Aladdin. 

After waiting for a few minutes I went inside and may have sounded something like this:

"Uh, excuse, me. Uh. This probably sounds crazy. But um, uh, well, Aladdin told us to meet him here."

Shuffle feet. Look at floor. And then be astounded to hear:

"Oh, yes, ma'am. Aladdin is waiting for you and your family in a special room back here. He really just wanted some more time for photos and visiting."




Benjamin did not let go of that Lamp for years. He loved the shine right off. And though a teenager, it still has a cherished spot in his room!

I credit Aladdin with much more than a magic lamp however. It was this amazing young man who taught me to seize the extraordinary moments; to quit working so hard to fit in and be "normal" and just embrace that which makes us different.

I did not know in 2001 that Benjamin would be in a power wheelchair at 16. I did not know that he would be facing a scoliosis surgery in the month after his 16th birthday. I did not know that Mason would be facing continued medical issues that cause pain, prevent him from his normal activities and require appointment after appointment. I didn't know that Claire would be my right hand gift, the one that stands with me, working tirelessly to meet the needs of our family. I didn't know.

But I learned. I learned that it is OK to get some special treatment every now and then. It is OK to accept the love and generosity poured out from the dear ones who look and see and realize that hey, some days are super hard for those kids, let's love them.

And so we learned. We learned to accept that some milestones -- like today -- will bring joy mixed with grief. And that it is OK to feel the sorrow, as long as we feel it and move past it, embracing the amazing that is this life with these FOUR. Embracing the extraordinary aspects of life with cerebral palsy, and making sure the boys are able to do the same.

So we will let go of any sorrow about this new car. We will celebrate the new phase it signifies for Mason and Claire. And we will pack up and go celebrate Benjamin and all his favorite things as a family in Disneyland, thanking God for each joy-filled memory we make!

What a blessing to be the Mom of these extraordinary children young men and young lady -- and one little red!

Happy happy happy 16th birthday, my beloveds! You are my inspiration, my joy, my blessings from God! 


Ash1988 said...

I'm totally in tears Carol. I don't know what to say, but I'm in tears of joy and heartache. Thank you for this glimpse into what it is like being the mom of these incredible young men and young lady (and little red ;) ). I see Christ in your family so much, in the way that you all love each other. In the way that you and Wade love and are raising your kids and always considering them individually. It is such a blessing to know you and your kids.

Ash1988 said...

I'm totally in tears. Tears of joy and heartache. Thank you for a glimpse into what it is like to be the mom of these amazing young men and young lady (and little red ;) ). I see Christ in your family all the time. The way that you guys love each other is a breath of fresh air. And it is such an inspiration as a mom to see how you take such care to see your kids as individuals. I am so blessed to know you and your kids!

Messy Mom said...

This is so beautiful. I am here from (In)cluded and as a "new" special needs mom this teaches me A LOT. I am bawling my eyes out. Thank you for sharing this story!

Messy Mom said...

This is so beautiful. I am here from (In)cluded and as a "new" special needs mom this teaches me A LOT. I am bawling my eyes out. Thank you for sharing this story!

elissa said...

So good to read,
my "triplets" (aka twin girls and an adopted brother who's two months younger) share a similar story. I have two healthy, functioning 9 year olds, and one who has the cognitive / social / emotional development of a 6 year old.
He knows he's the same age as they are, but he is capable of so much less. It makes for an awkward dance through life.
Glad to connect! I need more friends like you!

elissa said...

Oh and happy birthday
happy birthday
happy birthday

(that's one for each kid! The mother of twins knows that each kid needs to be celebrated individually!)

AZ Chapman said...

Happy b day Ben Mason and Claire

Ben i have mild CP and am 21 and still do not drive you are not alone

AZ Chapman said...

also love the Aladin story

Phyllis DeGrado said...

You are truly an inspiration!!! What a blessing from God these children are I am crying as I read the story of the car and Aladin. I know they will bring you many years of happiness and joy may God continue to bless and keep your family!!

Phyllis DeGrado said...

Carol you are truly my hero and such an inspiration! What a blessing from God these beautiful children are, as I sat here and read your story the tears were flowing freely!! May God bless you and keep you and your family. I know they will continue to bring you and your husband great joy in the future!