I feel like with 3 kids in the house, we almost always have some 'night time issue'--if I make it through the night to a respectable morning time without getting up at least once, I'm always shocked.  One night this week our night time surprise was a midnight visitor.  I rolled over in the night and noticed Garrett sleeping beside Paul...he learned a long time ago that he would get a much more welcome invitation from his father's side than mine:).

The next morning, Paul and I woke up to the sound of a baby crying, but no Garrett in our bed (for the record, he has been known to wake Ada in the am, but this was not the case that day).  We were practically 'high-fiving' each other as we made the bed...celebrating that he had, on his own, without tears or threats from either side, gone back to his own bed.  Parenting success.  Yeah for us.  We are awesome.

At breakfast, we celebrated the little king....congratulating him on his mature decision to return to his own bed, when he says:
"Oh.  I did that because I wet your bed."


Perfect:)

What She Has, Part III

**just to clarify--none of this is 'new news', we found out Lilah had 1P36 deletion syndrome over three years ago, but chose not to share it at the time.

The news was the worst we had received so far....which is saying a lot, because in the course of the last 4 months, we had gotten some pretty bad news...time and time again.  I remember telling a friend that I felt like the sky was falling in, bit by bit--and the news that Lilah had 1P36 deletion syndrome was the final bit.  I'm sure everyone is different, but for us, this felt like the worst news we could receive.

Here is why it was far worse for us than any of the other diagnoses we had already been given:

  

-it was the reason for alllllll the other 'things'....the seizures, the structural anomalies, the low tone, the poor weight gain, the heart disease....they were not mutually exclusive anymore...and their sum seemed greater than the individual parts....and even though we knew they were not going to get better....now we knew.

-this diagnosis came with a slew of new things to worry about that, up until that day, we had not even considered (certain mental retardation, hearing and vision loss, non-verbal communication, etc)--and we already felt very maxed out in the worry department.

--the diagnosis felt like a death sentence....if not literal death, then certainly a death of hope.  Up until that day, we still held the slightest hope that she might be 'normal' (very sick, but 'normal'). now, we knew she wouldn't be 'normal'.

We didn't really keep her diagnosis a 'secret', but we definitely did not share it with anyone but close friends and family.  I knew we wouldn't keep it private forever, and it was nothing we were ashamed of, we I just needed awhile to process it.  I did not want 'it' to be what defined Lilah....before she had a chance to prove all the statistics wrong.  I did not want people I had never even met, googling pictures of 1P36 babies and comparing their pictures to my baby.

Most of that seems silly now and I wanted to share because God has written this child a beautiful story....and this is a part of that story.  I know that 'what she has' is not 'who she is'....she is the daughter of the King, perfect and pleasing in His sight.  I hope Lilah's life is and will continue to be an encouragement to others.

What She Has, Part II

And so...I studied the pictures of the kiddos with the syndrome I'd found on the internet, begging the Lord that this was not "it"and quietly knowing it was.

We went to the pediatrician the next morning and dealt with the constant health housekeeping of those days--adjustments of medicines and oxygen, coordinating services and physicians--and I was a nervous wreck the whole time, trying to get up the nerve to ask:

"So, about that genetic test you had run...have you heard?"


Our doctor said he was sure it was fine, but would call Children's and see if the results were in yet.

He came back in the room, nearly weeping, and said:

"Mr and Mrs Burch, I'm so so sorry.  Lilah has 1P36 deletion syndrome."


Paul, at that point was clueless about the implications of that diagnosis and I was, between sobs, sputtering an obscene amount of knowledge about this condition....rambling on about all the symptoms I had read about the night before.

Heart disease, heart deformities, seizures, hypotonia, loss of vision, scoliosis, loss of hearing, lung disease, significant gross motor impairments, fine motor impairments, inability to communicate, and...severe cognitive impairments.

By God's grace we were able to reassure our sweet friend and doctor that we weren't going to drive off the Henley Street Bridge.

Part III later....

What She Has

The short backstory is:  when Lilah was admitted to the ICU (the first time) and her cardiologist (who we had never met) met us up there (on a Saturday) to tell us that she not only had an ASD (hole), but also a VSD (another hole), and LVNC (something wrong with the muscle)....I knew right then and there that she had a syndrome.  Because of my background in speech therapy, I knew that a child doesn't present with more than one structural anomaly by "chance" (usually). I think I blacked out at that point, because I only remember tiny bits of the next few days.

Anyway, a couple of months went by and we never pursued a 'diagnosis' because we were, literally, busy trying to keep her alive.  But, the Lord had provided a pediatrician for her who also 'happened' to be a genetic specialist and he knew exactly what to look for--so, he had specialized labs run for a specific syndrome during one of Lilah's hospital stints.  He did not tell us what the syndrome was he was looking for, only that the labs had been sent.

I am nothing if not practical and direct, which I say because the next part of the story is highly unlike me.  I am not prone to imaginative fears, or intuition, or any kind of 6th sense.  I do not Google unknown quantities-- 'number to pizza place', yes --'causes of a cough', no.  But, the night before a scheduled doctor visit (at this point we went 2x/week), I was laying in bed unable to sleep, and thought I'd surf the web. :) I typed what I thought were her biggest 3 symptoms into the search bar and the first thing that resulted was the name of some syndrome I'd never heard of--and a picture of a child that looked an awfully lot like Lilah.



You'll have to come back for Part II, because I just heard the princess chuck her glowworm out of her crib--which, in Lilah-speak, means "mommy, get in here now!!".  Duty (& privilege) call.  More soon....

Valentines

If you are looking for the perfect gift for someone you love, or from someone you love....I have it!  I got these for Christmas and, I'm not kidding, I think they are the best gift I've ever gotten (except my engagement ring!).  They are giant, professional, wooden photos of my babes and they are gorgeous in person.  Seriously, works of art! Look how pretty:

Check them out here.

Sisters

My favorite moments as a mom are watching my children together.  I have no idea why, but it's just the sweetest thing ever.  Sometimes a lot of times, it makes me sad to watch Lilah with her siblings, because it's so obvious that she's in her little world--but most of the time, I love peaking around the corner to capture glimpses like this:

These sweet sisters love each other and one another's company.  They are always right on top of each other, sometimes to the point of annoyance for one or the other--which especially cracks me up.:)

Someone stealing pacis or pulling hair, ignites huge crocodile tears from the other, but they make up with giant, slobbery kisses:).

 This one is cute.

 And she knows it!