Sunday, October 16, 2011

31 for 21 - Day 16 - The Other Kids

I cannot read this post without crying hysterically.  I've now read it 3 times.  It verifies not just some, but most of my worst fears.  That I will somehow not give enough love, time and attention to Tommy and that someday he will know it.  That I will have to spend more time and attention on Joey and that Tommy will suffer from it.  Life as a parent is one giant balancing game.  Life with a child who has some extra needs is one ginormous balancing game.  Much like all things with being a parent, there is no owner's manual or instruction guide.  I rely mainly on instinct and gut on a day to day basis.  Am I doing it right?  Check back in about twenty years.

A lot of days my gut tells me it is more important to spend some alone time with Tommy than to make dinner.  To take him to get ice cream when we have free time.  To stop and watch Lilo and Stitch (one of the strangest Disney cartoons I've ever watched and yet we can't stop).  Sometimes I take him to the grocery store alone just so we can be together for awhile.  Most times we slip into Starbucks and I let him get a special treat.

Another amazing photo by Nat of during our Starbucks run.
Tommy had to wear his Superman cape and then put his Doggy on his head so he could sip on his milk.
Thank you, Nat, for helping us memorialize one of our favorite bonding times.

Leaving him home while we took Joey to Michigan for nine days was one of the hardest things I have ever done as a parent.  You never want to leave one child home when you are taking the other far away.  I basically had to shut down and not even think about leaving Tommy at home.  Luckily Lauren stayed with him so he was at his own house doing his regular routine the whole time.  I'm learning to rely on friends and family and to take them up on offers of help.  Whether it's going to the Fall Festival with his buddy Grant, having ice cream with his favorite girls Addie, Ellie and Dorothy, or spending some time with Grandma, I'm finally learning that sometimes you can't do it all on your own.  For all the friends and family who are so kind and gracious we are eternally grateful.  Thank you for helping Tommy to also feel special and thank you for helping ease the pangs of guilt that hit me when I have to be away from him.

Thomas Henry-- I pledge to you that I will do my best to be as balanced and to spread my attention between you and your brother as much as possible.  I cannot promise that I will always be perfect, but I promise you that I will always try to make you both feel as loved and secure as possible.  I promise that we will laugh, wrestle, giggle, go to the park, make forts, bake cookies, carve pumpkins, deliver Christmas cookies, watch movies, read books and do everything possible we can together.  I promise that there will be good times and bad times.  That while we will mostly laugh, there may be times that we cry.  No matter what happens or what we do I promise you we will do it as a family.  That we will always recognize and celebrate you as an individual and not only as "Joey's older brother".  That you will have your own identity and stories--all of which will be woven into our family tapestry.  However-- I don't promise any horses in your future....

This is the story that inspired this post.  Maiike is a beautiful little girl who was born with a cystic hygroma.  Joey also had a large cystic hygroma in utero, but his eventually resolved.  Maiike's story is incredible and her family writes a beautiful blog called Trach Ties that chronicles their journey.  Maiike is currently being seen at Boston Children's hospital and will probably be undergoing surgery soon-- if you think about it, please keep her in your prayers.

To the woman in seat 8C and all "other kids"

On our flight to Boston we were seated next to a business woman.  She was nice enough to let us move from the aisle to the window, but it came up very early in conversation that she didn't have kids.  I took that as the "so please keep your baby in check, I'm not up for it" kind of a statement.  She and Sid talked business while Maaike and I snacked and snoozed.  After a while she started to soften.  She wanted to know about Maaike. What was her story?  Why were we taking her to Boston?  She even shared two of her in-flight purchased sliders with Sid.  She was pleasant, but distant.

Then, without turbulence or warning, she started sobbing.  With only an hour left on our flight she decided to make her move and become unglued.  Through her tears she shared about her younger sister, born with down syndrome.  Her sister died just 5 years ago.  She loved her sister.  She learned so much from her.  But, "don't get me wrong," it was hard.  It was hard to have a sister who needed her parents so much more.  It was hard to not some how feel less loved when you require so much less time.  It was just hard.

Next came her plea.  "Be careful.  Don't forget your other kids."

She was able to regain composure in the telling of the horse her parents bought her.  She knew they loved her.  She still rides horses competitively all thanks to her parents.

"But still it was hard.  Don't forget your other kids."

I will never forget Coy's prayer just after they got back from China.  "...and please bless that Mom and Dad will care for us as much as they do for Maaike."  Indeed, finding the right balance between Maaike's tender health and Coy & Kees' tender feelings is no simple task.  We have tried, but there are days that feel like Sophie's Choice.  Last week we missed Kees' only soccer game because Maaike was in surgery.  Tonight I left Maaike crying hysterically with the nurse so that I could go to Coy's basketball game.  The choices are never easy, but I am learning to and trying to let go of the guilt, because I am doing my very best.
To the woman in seat 8C and all the "other kids": I hope you know you are not loved any less.  You are not less valued because you need less time.  You are not less important because you are healthy. You are loved.  You are valued.  You are so important to us.  I hope you know how special you are.


  1. Oh Jennifer! Ellie is my only child so I can only imagine your fear and the trials you must go through. The tough decisions you will have to make. My father is one of 5 and his youngest sister has Ds. He told me that they were all treated the same. Yes, Peggy needed extra care and sometimes needed to be in the hospital, but he knew that he was loved the same. No question. You are doing so well, Jennifer. When I think of how you prepared Tommy for Joey's surgery and how you made sure he was well cared for while you were away. . . . he knows you love him so.

  2. Jennifer,
    I will never, EVER forget a doctor visit with my eldest child. The doctor turned to her and said, "How are you doing with your sister?" She then proceeded to tell us how she had learned to care for her children after adopting a child that ended up taking way more physical and mental time that any of them thought. She focused on each child in a unique way and when things got to be "too much" for them within their family, they had a signal they shared with her that meant "I need alone time with you-pronto."
    From the get go, we decided that our eldest would not become of the statistics we read about in books about children with siblings and disabilities. She knew she had complete access to us and we were- and are still even at age 20- very intentional with our time together with her. That you are thinking these things with your sweet Tommy and bringing time alone with him into action at such a young age is a wonderous thing!! You will never regret it, and he will be a much richer person for it. As an eldest sibling, there is a story that is all his own. Toss into the ring being a sibling to a child with special needs and you have your very own circus at times, but it's a beautiful one and Tommy will grow to be a special person all his own.

  3. I am so honored and touched that you connected with our story. I think the key is to do what you are already doing, carve out individual time and be mindful. You have a beautiful family.

  4. What wonderful comments!!! Thank you all for the support, the ideas, the insight-- I love reading your comments! Rian-- we love your blog. Maikke is such an inspiration and we will be following your journey! Xoxo beautiful ladies!!!

  5. Jen, this just reinforces your decision not to work right now. You will have more time to devote to both sons... who will both benefit from that extra time.


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