Thursday, April 28, 2016

Therapy Update

Abby has started at a new therapy center, and we are loving it!  It's closer to our house than any other therapy we have had, and things are going really well!

She really likes the speech therapist, who does a lot of play therapy (Abby is SO not a flash card girl!) and has a personality that is easy to like.  She's young and energetic, and Abby even gets to go to the therapy gym sometimes to play while working on speech skills.  Bonus:  Abby has already talked to her more than she did the last private therapist we tried!

We have also started OT there, because the owner of the company is an OT who was willing to try post-op therapy with Abby.  They have PTs, but we were previously told that they couldn't take Abby because she was too complex.  The owner agreed to take her and would be her exclusive therapist.  She seemed very eager and willing to do whatever Abby needed, so I'm really hoping it will work out. We are going to try it out and see how it goes.

 I love our former private PT, but driving an hour and 15 minutes (or more, depending on traffic) is so hard!  Getting both therapies in one place only 20 minutes away would be glorious!  They have great hours, so I won't have to pull Abby out of school for therapies.  When she is projected to miss 28 days in half-day pre-k, that's an important factor!

So here's to great new therapists!

The Next Big Thing

Last week, Abby was at feeding therapy when we saw our awesome feeding GI (yes, she has two GIs!). He knows about Abby's surgery series, so he asked, "When is the next big thing?"  Knowing exactly what he meant, I filled him in on this upcoming surgery that's now less than a month away.  

Since then, I've thought a lot about the phrase "The next big thing."  Given that our life tends to revolve around surgeries and appointments, it is easy to get sucked into focusing on the next surgery.  It's bad enough for me to do it (which means very little sleep leading up to surgery!), but it's just not healthy for my kids to dwell so much on surgeries. 

In the year leading up to our Make a Wish trip, we often focused on trip planning to keep our mind off of Abby's five surgeries that year.  I decided tonight that we needed to focus our minds on things we are looking forward to, rather than the surgery we are all dreading.  

So, the kids and I sat down together tonight and made a list of "The Next Big Thing!"


You probably can't see the list very well, but they range from cousins' soccer games, to school musicals, to field day, to the last day of school.  I included the date of each one and we will cross it off as we reach it.  If we have a big event we are looking forward to (like our Kings Dominion trip last weekend), I might list it by itself.  

The next three weeks are filled with lots of fun, exciting things before surgery.  So we are choosing joy and focusing on The Next Big Thing!



Wednesday, April 20, 2016

What I long for

Have you ever knelt next to your child as he or she gets sick, or cuddled your baby with a raging fever, and just wished you could take it all away?  As miserable as it is at the time, you are so grateful when it gets better and you forget about how bad it was.

I feel this way all of the time, except that it is not going to get any better--at least any time soon.

Watching my little girl cry from the intense back pain that she has recently been experiencing makes me wish it were me instead of her.  I know how bad it is when she actually asks for the pain medicine that she hates to take.  We aren't sure if she needs an expansion or if her kyphosis (hump) is getting worse, but it's definitely affecting her.

 Hearing her sadness when she realizes she can't participate in her first dance recital because she'll be recovering from surgery brought tears to my eyes.  I didn't realize that she didn't know, but she sobbed when I had to break the news to her.  I had no idea how much she was looking forward to it until that moment.

Listening to her voice her fears about her upcoming surgery each night before bed breaks my heart a little more every day.  She is getting older, and she is beginning to perceive the unfairness of all of this.  She just wants to finish out the school year with her friends and be a regular kid.  She actually told me the one thing she hates about herself is that she had to have all of these surgeries.

I wish I could take it all away.

I wish she wasn't in pain.

I wish she didn't have to have these surgeries.

I wish she could dance on the stage at her recital.

I wish she could run around without getting winded.

I wish she could just walk around the mall without a wheelchair.

I wish we didn't have to have meetings to hash out details on how to protect her from getting bumped.

But we know that God is faithful.  He knows every step of this journey.  He knows the struggles we face.  He knows the pain Abby feels.  He knows the stress all of this puts on our family.  He knows my heart as Abby's mom and how I have struggled to come to grips with my genetics.

He knows.

So we will continue to hold Abby through the pain, wipe away the tears, keep an open line of communication, and to love her.  And we will continue to pray for her pain management, for her to begin to accept this life she has been given, and for her to come to an understanding that she has been created for a purpose.

Thursday, April 14, 2016

Everybody Looks at Us the Same

After the Shuffle, a reporter from The Baltimore Sun interviewed us about our experience with the House.  Caleb is featured in the article, and I think his words are wise beyond his years.

You can read the whole article here:


You see, RMH is the one place where everyone does really look at us the same way.  No one judges, no one gawks, no one teases.  We can all just be.  That's the beauty of The Ronald McDonald House.  It's so much more than a place to sleep.  It's a community of people who get you in a way that no one else can.  They love you through the hard times and celebrate the successes.

It really is The House That Love Built.

Wednesday, April 13, 2016

In Their Words: Abby

In Their Words is a series I created to give my children a voice.  Caleb loves to share about what it is like being the big brother to a child with special needs, and Abby shares her thoughts about life as a medically fragile child.  Everything here is written exactly as they told it to me.  This is their chance to be heard!

So, here's my five year old daughter, describing her life in and out on hospitals...in her words.

I have tons of surgeries on my ribs to help me be strong and big.  Dr. Campbell is fixing my ribs.  My ribs are so tiny they can't even get much stronger, but Dr. Campbell is helping.  I have trouble breathing sometimes.  And sometimes I throw up when I'm at the hostible (hospital). I don't like the medicines, because sometimes the purple one I don't really like. I've had a million surgeries!

I don't like that we have to go to the hostible and have surgeries.  They hurt.  They hurt all of the time.  It's not fun to have surgeries, and I'm afraid of them.  It makes my heart break.  When I have a surgery, Momma sings songs to me before I go off to sleep.  After I wake up, Momma and Daddy are always there.  Momma always tells me that every day it's going to get a little bit better.

At the hostible, I like that they have therapy dogs to meet and the playroom.  I like to do the crafts they have.  But I don't like BLOOD DRAWS!!  Ow!  I do not like that!!!  When I'm at the hostible, I miss Caleb when he is at Nina and Paw Paw's house.  We Facetime with him and that makes me feel better.  But sometimes I cry for him.

My back hurts all of the time.  Sometimes it hurts a lot.  Then Momma gets me medicine in syringes.  I do stretching to help my back not hurt.  But it always hurts a little because of all of my surgeries.  But it's okay.  I'm okay.

 I am super duper brave because I have so many surgeries.  But I don't want to be brave.  I just want to be healthy all the time.

Monday, April 11, 2016

In Their Words

Being a special needs parent is vastly different from being the child with special needs, or from being the big brother.   I am hoping to start a new series called In Their Words that allows Caleb and Abby to share their own perspectives.  Abby is getting old enough now to share some of her frustrations and fears about her surgeries, and I think it is important for her to feel like she has a voice.  Caleb is often so reflective that I know he will have lots to share. Who knows, maybe In Their Words will make it to The Mighty!

Today, Caleb is going to share what it is like being the big brother to a child with special needs.  This is written in his own words, with me as the typist.  :)

Abby's big health concerns are her spine, her breathing, her hearing, and her seeing.  She has to have a lot of surgeries on her back and ribs.  She has special needs, which means you need special stuff to help you with sickness or special things that other kids don't have.  And I don't like the term "regular" kids.  It doesn't sound right, because we're all kids.  We're all unique.

One time, when Abby was a baby, there were some kids pointing at her neck because she had a trach.  They were laughing.  It made me feel angry because they were making fun of her, and she's my sister.  Children with special needs should be treated the same way other kids are.  They shouldn't be treated any differently.  We're all kids.  We're all people.

 I think the hardest part about being Abby's big brother is all of the surgeries, because I don't get to see her and I miss her.  But the best part is seeing her for the first time when she comes home after a surgery.  We get along really well for the first few days after she gets home!  If I could change one thing about our life with Abby, I wouldn't want her to have so many surgeries because I miss her when I don't get to see her.

When we were younger, I was surprised at how much attention Abby got.  But it's fine.  It's just surprising that she got so much attention.  She doesn't get as much attention now.  I feel like we get about the same now.  But when she was a baby, she did.

One good thing that has come out of being a special needs family is definitely The Ronald McDonald House!  They are always welcoming and kind.  Nobody there makes fun of you, and they look at you the same way they look at other kids.  I love it there.

If I could tell the world one thing about children with special needs, it would be that they are the same as other kids, so just treat them the same way.  We all need love.

Friday, April 8, 2016

Cousin Love

These guys had a great time at the boardwalk together!


A bench in memory for sweet Parker, who was taken way too soon