Wednesday, February 13, 2013

Liebster Award: Special Needs Edition

I was nominated for a Liebster award by This Journey Our Life.  I have never had the pleasure of meeting her in real life, but she is a fellow special needs blogger who found me through the blog I love oh-so-much, Love That Max.

Today in participation with the official Liebster Award rules, I’ll be sharing eleven random facts about Abby, and sharing my answers to Rachel's questions.  

11 Random Facts About Abby:

1.  She absolutely loves "Call Me Maybe."  AND she can sing along.  As soon as those first few strands of music start, the girl is up on her feet and dancing.

2.  Abby recently received a Leap Pad as an early Easter gift.  I know, I know.  Easter is still over a month away.  But I bought it from a friend whose kids had outgrown theirs, and I knew Abby would love it.  So I gave both Abby and Caleb their Easter gifts early.

3.  Abby calls Matt "Daddy Matt."  

4.  We're not sure why, but she can't say her cousin's name correctly.  Instead of saying Anna, it comes out Ahna, thereby making her sound quite British and proper.  I half expect her to follow it with Would you like a spot of tea?

5.  Abby knows the letters of her name, but she spells it A-b-y.  She refuses to even say b-b at all.  It's as if you just shouldn't have the same letter twice in a row.  

6.  Abby had so much hair that the sonographer could see it floating in the fluid on the sonogram.  It was the first time in her 20+ years that she'd ever seen it.

7.  Her original due date (November 29th) could have very well made her a Thanksgiving baby.

8.  When you ask Abby, "Where's your button?"  she points to two--her belly button and her gtube button.

9. I have no idea where she learned this, but she surprised me a few weeks ago by galloping down the road.  I was quite impressed!  She now does it on command.

10.  More often than not, Abby calls Caleb "Caleb Boy."  It makes me smile every time!

11.  She scolds herself when she does something wrong.  "No, no, Abby.  Don't throw your glasses.  That's not nice."

My answers to Rachel's questions:
1.  When did you embark on your special-needs parenting journey? (share your child’s diagnosis story)  We knew that Abby had a small jaw during pregnancy, but didn't learn about her CCMS until her birth day.  You can read the more detailed version of Abby's story here.  

2.  How do you balance spending time with your other (non-special needs) children? It's a lot easier now that Abby is more mobile and can stay with my  mom or sister!  We try to give Caleb one-on-one time and allow him to do the things he wants to do.  We also gave him his own Lego space in the basement so that he could retreat down there. He's the kind of kid who needs his own space, so he loves it.  He has a daily chart where he is usually earning a reward that involves spending time with one or both of us.  I have also made a point of trying my hardest to get to the special events he has at school.  I wasn't able to go on his first field trip to the pumpkin patch because Abby had just been decannulated and we weren't leaving her with people yet, but I'm hoping he will have another field trip this spring that I can attend.  Matt is gone a lot, but he really enjoys reading to Caleb every night that he is able.  They're working through The Lord of the Rings series and have already read the entire Chronicles of Narnia series.

3. Share an act of kindness someone has done for you or your child.  There have been SO many!  I don't think I can narrow it down to one!  When Abby was in the hospital, SO many people sent us gifts, money, and cards.  It was amazing.  People we didn't even know were making Abby blankets and letting us know they were praying for her.

4.  What is one thing you want people to realize about your life as a special needs parent?  It's often lonely.  The ones who relate to you the best are those online whom you've never met!  It's just hard for others to get what you deal with on a daily basis, even when they try.  It's easier now that Abby isn't so isolated, but I still have moments.

5.  In what ways has  raising a child with special needs affected your relationships/friendships? See above!  :)  It has been incredibly eye opening to see who has stood by us through all of this.  I have been both pleasantly surprised and deeply hurt.  Some of my relationships have been strengthened--like my relationship with my sister, for example.  (I could go on and on about how much she has done for our family and how well she loved us during that crazy time.)  Others have hurt us by choosing not to get to know our sweet girl and show her the same unconditional love that she gives to everyone.  But I try not to dwell on the hurt.  I'm human, so I do sometimes.  


6. What brings your child the most joy?  Her brother!!  And "Call Me Maybe."

7. If you could describe your child in three words what would they be?  Joyful.  Sassy.  Miracle.

8. What aspect of your child’s special needs has been the hardest to accept?  Things are always going to be a little harder.  There is always going to be something that is going to be more difficult for Abby than others her age, be it eating, or playing soccer, or being intubated.  Another thing that has been difficult to comes to terms with is the lack of acceptance by others.  It's better now that the trach and vent are gone, but "looking more normal" shouldn't be the reason a person is accepted by others.  Everyone deserves to be loved.

9. If you and your child could take a dream vacation where would you go?  I would love to take her to Disney World to see the princesses.  She would love that!!!  (I would also love to go somewhere, anywhere, and have all of the fellow CCMS families...all 10 of them...meet us with their beautiful children!!  Wanna meet up in Disney World, CCMS people?!?!)

10. What’s the most important lesson your child has taught you?  Be joyful in all situations.  Never let someone tell you that you can't do something.

11. What advice would you share with a parent just beginning their journey of parenting a child with special needs?  Always ask questions, and don't just accept whatever the doctors tell you.  They aren't God, so they don't know for sure--even if they tell you they do!  Also, don't get so wrapped up in your child's diagnosis and medical care that you lose sight of the fact that he/she is still your child.

Now it’s my turn to pass out the award to other special needs bloggers!  I nominate Rachel and Debbie!

Rachel is the momma of two adorable boys--one who has a trach and vent, and Debbie soon to be the momma of three--with her middle child having special needs.  Both are amazing, and neither have I met in real life. But like I said, sometimes the ones who get you the most are ones you've only talked to online.  :)

Ladies, here are your questions:

1.  What do you love most about each of your children?
2.  Describe the relationship your special needs child has with his or her siblings.
3.  What has been your biggest life lesson during your special needs journey?
4.  How has your relationship with your husband changed since you've had a special needs child?
5.  Give 3 words to best describe your child.
6.  Are there any aspects of your special needs journey that has been surprising to you?  If so, in what way?
7.  What is something your child is really good at?
8.  What is one milestone that you have especially celebrated with your child?
9.  One thing I wish people understood about my child is...
10.  What are your child's favorite activities?
11.  If given the opportunity, would you take away all or a piece of your child's disability?  Why or why not?

1 comment:

Raelyn said...

Julie....
Congrats on earning this award!! You totally deserve it!! ;-D
Those are all fun and amusing facts about Abby!! ;)
Number four cracked me up!! ;-D
Number eleven produced first a snorting laugh, then a giggle to follow from me!! ;-D
Answer numbers four and five. I get it. My Mom, too, dealt with special-needs. Because of me.... ;)
Answer number eight. I get it. I have been left out and made fun of just because of my learning disabilities. "Another thing that has been difficult to comes to terms with is the lack of acceptance by others. It's better now that the trach and vent are gone, but 'looking more normal' shouldn't be the reason a person is accepted by others. Everyone deserves to be loved.". I wholeheartedly agree!! ;-D
--Raelyn