It looks like I'm down to blogging only on major holidays (sorry I missed Whitney Houston Day). For one, my baby is on the move. F.A.S.T. For two, I've started a little side project that is taking all my computer hours.
But, I'll leave you with this presidential dinner conversation (don't think we are like the Cleavers, we usually talk about basketball or are too busy making threats to talk).
Me: Garrett, what would you do if you woke up tomorrow and George Washington was at our breakfast
table? (he had just told me he was his favorite, which is code for 'the only one he knows')
G: " I'd say "WHAAAAAT? Are you DOING here?"
"Then I'd sing, OH SAY CAN YOU SEE"
Sunday, February 19, 2012
Tuesday, February 14, 2012
Happy Valentines Day
I would love to have a full-time transcriptionist that follows us around and writes down what Garrett says. Here's an bit from this morning:
Me: "Happy Valentines Day!"
G: "You are my valentine, momma."
"Well, and myself. I love myself."
"I think it's important to love yourself"
Me: "Happy Valentines Day!"
G: "You are my valentine, momma."
"Well, and myself. I love myself."
"I think it's important to love yourself"
Tuesday, February 7, 2012
Happy Heart
We get a little uneasy around here right before a cardiology appointment, but last week's arrived before I even had a chance to worry. And, thankfully, Lilah's heart looked awesome! Her cardiologist was genuinely pleased and said everything looks as well, or better, than last time. Hooray!!!
Don't hear me say that her heart problems are gone, because the issues are still there, but Lilah's heart is doing an excellent job compensating and the function (the fill and empty of blood) is very close to normal.
Like soldiers after battle, Paul and I and her doctors love to talk about how sick she was 'back in the day'....shaking our head in disbelief that this is the same girl. "....wonderful are His works!" (psalm 139:14).
Happy Valentines Day, early!
Don't hear me say that her heart problems are gone, because the issues are still there, but Lilah's heart is doing an excellent job compensating and the function (the fill and empty of blood) is very close to normal.
Like soldiers after battle, Paul and I and her doctors love to talk about how sick she was 'back in the day'....shaking our head in disbelief that this is the same girl. "....wonderful are His works!" (psalm 139:14).
Happy Valentines Day, early!
Wednesday, February 1, 2012
Tuesday, January 31, 2012
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:)
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:)
Thursday, January 26, 2012
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.
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.
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,
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.
Monday, January 23, 2012
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....
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....
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