Thursday, November 20, 2014

Sprinkles on Top

One year ago today, we were blessed with this sweet girl.

How can we even put into words what a JOY she is to our family?  She's makes all of us so happy!

We celebrated her today. It was a quiet affair.  But perfect for a 1 yr. old.  Just the five of us, plus family that FaceTimed and Skyped in. :)

Caleb helped prepare and we put together a fun little "Sprinkle party" for her.

Life was already so sweet when we found out Hannah would be joining us. I mean Andrew and I had already been showered with so much love from our Heavenly Father.

With each other.

With these two boys......

With precious friendships. With miracles. With peace and grace and mercies new every morning. God is so good. 

Life was sweet, but the gift of Hannah was like sprinkles on top of it all.

 It was like God was saying, "Not only that....I'm showering down extra sweetness on all of this."

What a gift!

I hope to write more about her soon, but for now here are some pictures from her special day.

Caleb helping get the food ready.


Sprinkles....lots of sprinkles!!

Caleb making his "Hannah" sign with, of course, sprinkles :)

Daddy brought Hannah birthday flowers....

So earlier today I said to Andrew, "Mmm...I didn't really think about her birthday dinner. What would she like for dinner?"  Probably in a bit of a sleep deprived state, we decided that since she loves Cheerios.....we should go splurge on a few of the many, many kinds of Cheerios you can find these days. So 'breakfast for dinner' it was. The kids were thrilled. :)  Ahh...memories. Ha!



She was so careful at first....

Then, she went for it!

The FaceTime/Skype session with far-away family.....

I got too distracted and didn't take any pics of her opening presents. But, at the end, we let Luke give her a new box of Kleenex. Just what every one-yr-old wants. :) She loved it!!  She got to pull out as many she wanted. She kept pretending to blow her nose. Ha!


Saturday, November 1, 2014

Brighter Days

Things are looking up for Luke and we couldn't be happier.

The extreme meltdowns seem to have subsided for the most part. Not that they don't EVER happen. But it's fairly infrequent....maybe once or twice a month. And even when they do happen, it's been easier to talk him down. For several months, when Luke would have a meltdown, it was like he was caught in a circuit and there was no coming out of it.  It was like the meltdown started and quite literally his brain couldn't come out of it without just riding it out..until it was over.  Usually 30 or 45 minutes. Which of course felt like hours. Because it was 30 minutes solid of screaming, crying, kicking, biting, head banging, and other various forms of self harm. Truly intense and truly unbearable in many ways.   Needless to say, we are thankful for not having to live this reality multiple times a week. Thank you for praying!

I wanted to write a bit about Luke's school.

I'll never forget after the boys were born and we realized Luke suffered some significant damage to his brain. Someone said to me at some point (the specifics are somewhat foggy), "Oh my goodness. What will you do if they can't be in the same class at school?"  I don't recommend asking questions about something that will happen in five years. There's grace for today, folks. Especially when it comes to special needs parenting. We basically have a game plan for like...well, today. And maybe next week. But everything is evolving constantly. And well, our morning cup-of-joe is getting us through the right-here-and-now moments. And, I ask God to be my My DAILY bread. Tomorrow will bring new mercies and new strength. So, I wasn't thinking much about Kindergarten at that point.

But, as the months and years passed, I did think about Kindergarten. A lot.  The truth is, it would be very rare for even typical twins to be in the same kindergarten class. At least in our part of the country, the norm is to separate twins. So, the thought of them being in the same class was never really one I considered. But we did OFTEN pray that by the time they started school, Luke would be caught up enough to attend a regular Kindergarten class.

So, September came around this year and it was time. Time for this.

CALEB'S first day of school.

I was so ready and so not ready. We dropped Caleb off at his school first. I totally lost it. So much so that Andrew had to walk Caleb in while the rest of us stayed in the car. Of course, I held it together for the good-bye.  I smiled big and told Caleb I knew he would have a great day. He was SO excited for this moment and not at all nervous, so that helped a lot. But once Caleb and Andrew got out of the car and started walking in, the reality of it all came crashing down.

Sometimes in this life, grief comes 'round again. You can't push it away or make it disappear. You just tip your hat and acknowledge it. And allow the tears to fall.

There's no guilt in grief, for goodness sake.

Some days, you just grieve the might have been. The picture you had in mind when the doctor said, "There's two in there!"  You imagine they'll be inseparable. Best buds.  Living life and experiencing life together.

But there was no 'together'. It wouldn't just be separate classes. It would be separate schools altogether. For one reason: Though identical twins, our boys experience life completely differently. One, the way most healthy, typical children experience life. And the other, as one who has experienced a great deal of challenges. Sickness. Feeding tubes. Surgeries. Seizures. Delays. Impairments. Disability. Diagnoses.

At the end of preschool last year, our school district called a meeting. Then another meeting.  But after those meetings happened, more meetings were scheduled. And we came to realize our school district was grappling with one question, "Just what do we do with Luke for Kindergarten?"  One day last Spring, we sat around a table with 8 different teachers and therapists. All so knowledgeable and all concerned that Luke would have optimal placement. We agreed to reconvene, as no decision had been made. In fact, out of the eight staff members present, there were SEVEN different opinions on where Luke should be placed.

We prayed. We fasted. We toured schools. We met with principals. We thought we knew what was best. But as time went on, even WE didn't know where we should place him.

Finally, a decision was made that Luke would be placed in a newly formed class at Park School. Park school is a facility in our district for multiple-disabled children. I had visited the school. And while I impressed with the staff, I just worried about the lack of exposure to typically developing peers.
Luke is in an interesting place in his development. He knows about as much as any kindergartner in some ways. He knows his letters and their sounds. He can recognize some sight words. He knows his numbers. He can count objects. He know his colors and shapes. He can sort. He knows a great deal of information.

And yet....his delays and disabilities limit him significantly. The visual impairment requires he have many modifications. His sensory processing issues make a regular kindergarten environment unbearable for him. The size of the room, the amount of children, the lack of certain kinds of structure, the would all be excruciating for Luke.  And certainly would not provide an optimal learning environment.

The day after we dropped Caleb off for his first day of Kindergarten, we dropped Luke off for his first day at Park School. It's hard to even express how perfect this classroom is for Luke.

It so incredibly organized and structured. There are only 4 students in the class. One teacher and two aides. A dream for a special needs parent!!  That means, he is almost always getting one-on-one attention/interaction. SOO hard to find this kind of set-up in a public school. Luke is excelling! He LOVES going to school. His language is blossoming. His skills improving. His overall mood is just....happier. We see him interacting more with Caleb and Hannah at home. We see him being more able to handle various "stressors".

Most of all, God had led us to a group of people who truly love Luke. They accept him for who he is. They push him to do better. They're patient on the days when he is not at his best. Simply, they just want the best for Luke. And I guess even more than that...they ENJOY him. They don't just educate him and help him and check the boxes when he achieves a certain goal. When I drop him off in the morning, I can just tell they are genuinely excited to see him.   And really, what else could we ask for?

I stand amazed at God's great us, yes. But also, to Luke. We moved here to this city for one reason. Northwestern University. Because God called us here. It was (and is!) a leap of faith. We couldn't negotiate with God. We did it...trusting that every need would be met. That our kids would attend the local public school and it would be what was best for them. And I guess, at the end of the shouldn't surprise me. But to think that God has so carefully positioned us. So carefully helped us find an environment that is so helpful for Luke. Thank you, Lord!!

And while "The first day of kindergarten" for our boys may not have looked like what we thought or even what we prayed for, we are filled with humble gratitude that it was filled with a kind of beauty that only comes from God. And in many areas of my life I'm finding that Jesus knows our grief, but He graciously invites us to come and see HIS plan and HIS ways that are so much better than ours.

Luke's First Day of Kindergarten:


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