Tuesday, July 19, 2011

Birthday Bummer

We celebrated Lilah's 3rd birthday with a "Backyardigans" party, which means I had invitations printed, we had a cookie cake, and treat bags...all with her favorite faces....Pablo and his gang (pictured below).
I had no grand illusions that she would be all 'thanks mom, i love my party' because she didn't really have a clue that it was her birthday--or even what a birthday is, for that matter.  But, one of the thousands of things I'm still trying to figure out in this journey is how to keep life as typical as possible with an atypical child.  We want her to have every opportunity to experience as much of life as she is able.  There are very few activities that she likes and/or is able to be a part of these days.  I kind of thought a birthday party would be one of them.  Of course we want to celebrate her life and want her to feel celebrated.  She did not feel celebrated.  She felt scared, confused, and totally overwhelmed.  Fail.
The thing is, we basically just invited family, but with the Burch crew, it ends up being a lot of people.  People that she loves and sees regularly.  But, they are not all always at her house, surrounding her, singing to her.  We sang happy birthday to Lilah, because that's what happens when it's your birthday.  And her lower lip started to quiver, and her eyes filled with tears, and she looked at Paul and I with one of the saddest expressions I have ever seen.  It was as if she knew she should like it, but she knew also that she didn't 'get it'.  Broke my heart.  I felt like I had set her up--unintentionally, of course, but we had failed her none the less.

Birthdays are hard around here.  Just like most things in this path we are on, the emotions run the spectrum from extreme joy and thanksgiving to profound sadness and grief.  Of course we are overwhelmed by the blessing of her 3 years, but we are also more clearly aware, on 'milestone moments' of the trials that we have endured and the difficulties that lay ahead.

After the disastrous song and an even poorer reception of 'gift opening', I was having a little pity party for myself.  My sadness met total understanding when I saw my husband's face.  He told me, "you are sad because it's sad".  Paul is deep, I know:)...but he's totally right.  It sucks that Lilah is limited in the ways that she is.  It's terrible that the other little girls are running around trading charms for their bracelets and she is eating crayons.  This was not my plan for her and it is just plain hard.  As much as we feel like we've 'accepted it', I am learning that there is new acceptance to work on at each new stage.  And probably, more truthfully, I am never going to be "OK" with it...it will always be hard.
  At the end of the party, she was happy as could be, watching her Backyardigans on the iPad....looking up to see if her mommy and daddy were enjoying it as much as she.  And I felt better.  We had not done permanent damage.  Lesson learned.  She is helping us navigate this path, isn't she?  Lilah may not talk, but you know exactly how she feels by the look on her face.  She has very few expectations and most of them are to be in the comfort of those she loves--and we do adore this girl! Lilah loves life and people with her whole heart....a love that is fierce and pure.  And she has taught us a lifetime of lessons in her 3 years.  
We continue to covet your prayers for her life--prayers that God will protect and bless Lilah, whatever that looks like--and most importantly, that His will be done in her life.  


Aimee D said...

so love and appreciate your honesty and bravery in opening up so that we can all join in this journey with you. what a blessing she is to have you guys as her parents and despite the "failure" of the day...you can't deny by these pictures that she is SO totally loved and she knows that. What better thing than to walk through life just knowing you are loved? That is all God wants of us...for us to walk in the confidence of His love for us and be ok with just that and what freedom it brings to just love others. Lilah's life is such a picture of that.

Meredith Sledge said...

How precious!! It's beautiful to see parents so loving as you, enjoying life to the fullest.

Anonymous said...

Dear Paul and Gina,

I finally saved your link to favorites so we can check on you more easily at Mom and Dad's. I want to wish Lilah and your family a Happy Birthday for her! When I was growing up most of my stories to my family started with the phrase, "When I was three..." I guess that's when all the senses start to make memories that suposedly stick. I heard that Collin Ferril has a child with an illness that starts with the word "Angel-" He said the boy is high functioning and did not walk until he was four. I so wish to meet Lilah. Maybe one of these old days I will get a life that includes money and planning that come together at the same time to plan a visit that you will be O.K. with. I am sure you two have already got it right with Lilah.
i know I don't know everything, but I pray that God supplies you with all the tests, medical assistance, and help in general that you will ever need for al five of you or more...too funny my word to verify and post is the name of my childood pediatrician-whom my Mother tells me insisted that my issues were related to sugar, but couldn't prove it because he was not testing my insulin output. I have had that tested as an adult and that man was right, just couldn't prove it so I wound up at the neurologist! I thank God that Iwas able to paay attention all along and finally got the whole picture! I am happy for your other two children, also and congratulate youon never giving in or giving up on a family. Hooray!


Cousin Cathy