Quick Take Friday: back to school edition

1. On Tuesday we officially start year 2 of not-homeschooling. I have so many mixed feelings.  This is the blog where I attempt to work my way through those feelings.

2. As I think about things like sending my first born back into the world...and possibly via a big, scary school bus...all my confidences about school are replaced with thoughts about all the worst case scenarios that could happen to my precious 6 year old.  You simply can not protect them from everything.  That is scary.  That requires trust...and prayer.  

3. Today marks one month to go till D-day.  With an almost newborn, a 2 year old and a 3 year old - I am grateful that formal school will give our family a routine that I don't feel I could provide in this busy season of our life.  I do feel peace with our decision.  That decision, however, comes with a great cost. If the expense worth the routine?

4. Rosie is entering full day 5 day kindergarten at our parish school.  Augie is starting 3 year old two day half day pre-k at another church school.  Normally I would not send my 3 year old to school....but, in this case, I believe it will benefit us all in responding to his special needs.  Two private schools equates to adding a car payment to our monthly expenses.  Extra expenses...such as therapy and miscellaneous spending are not in the budget any longer.  I know the pastor uses the mantra you have to sacrifice to send your kids to Catholic school.  Catholic school....

5. Perhaps we are doing it from peer pressure.  The very large majority of our friends send their kids to the parish school.  Perhaps because if not homeschooling, it is the only other option for my husband.  Until recently I was not against public school.  But then....you realize....just how worldly even public elementary schools can become.  And recently, public school fell off my list of possibilities.  And so our options...teach or pay.

6. There are no homeschool co ops that exists within my parish community.  I am sure co ops exist...just none that I am aware of yet.  If I was surrounded by homeschooling families and a network of mentors, that would surely make a difference.  As it is, I am a public schooled mom married to my catholic schooled husband. No experience, no mentors, no homeschooling peer pressure...it is easier to take the path most traveled (here), in the midst of this stressful season.  I have a plethora of moms to help me navigate the parish school.

7. Year by year.  This year, this is the right decision for our family.  Rosie could not be MORE excited and as I snuggled Augie tonight...I started to reflect on what school would mean for him.  Being the middle child/second born...he takes a good amount of grief (not all undeserved ;-).  I had the thought "will I cry when I drop him off?"  A new challenge to my heart.  I am excited for the world before them...it is thrilling to watch the wide open eyes of my children.  Year by year, i will try my best to choose & provide what i feel is best for them.

First day pictures coming soon. 

Linking up with Jen: http://www.conversiondiary.com/2013/08/7-quick-takes-friday-vol-229.html

"God knew you needed a Catie"

Oh therapy, how I love thee.

Well...this is not entirely true, but how I need thee....at least right now.  Perspective is everything.

Parenting children with special needs is tough work.  Take the responsibilities of your average child, and multiply that by three, at least.  Triple the doctors visits and add to that specialists, surgeries, therapies, tests, and more tests.

Before he turned three Augie had been under anesthesia three times.  Twice for MRIs and once for plastic surgery related to an accident.  Catie, now two and a half, just had her third surgery.  All three directly related to maternal drug use.

We practically know every OT, ST and PT in town.  And are well on our way to understanding the multiple levels of services from early intervention to the inner workings of the intermediate unit.

Would this be my life if I had birthed a child with special needs?  Absolutely.  But this is the life I choose....or rather, the life that choose me.  When Augie was placed with us there were no special needs identified.  We knew he was at risk of mental health issues (aren't we all?).  Since his placement we have been on a wild goose hunt to figure out exactly what is going on in his little mind & body.  Two steps forward, one step back.  He recently re-qualified for services through our IU.  Now we have to figure out whether to enroll him in preschool at age 3 to get him the services he needs.

Catie...we knew.  I feel in love and all the discussion about what we were open to accepting went out the window for love of her.

In discussion with Dr D I confessed I struggled with compassion...before even having children.  His immediate response was "God must have known you needed a Catie."

The paperwork, the appointments, the surgeries, the CONSTANT flow of therapists in and out of my house...it is a lot.  It is tough.  And then there are my children.  The comprehension issues, the speech issues, the attention issues, the behavior issues, the eating issues...they all bring out my crazy.

But then.  Then, there are my children.  The ones whom I so rarely get to step back and see with perspective.  These beautiful little souls that God sent into my life for very distinct purposes.  If they were not bringing out my crazy, my crazy would not be in the process of being healed.  It takes everything inside of me and step back to see them as God sees them.  I fail in doing this every single day.  And yet, God trusts me.  God believes in me.  He sent these poor, needy, struggling, abused little people to a mama who would love them until she had nothing left of herself.  I confessed to a friend that I am not myself during the stressful times.  I am not the person I thought I was.  I am certainly not the mom I thought I would be.  And every day I pick up my broken self and carry on, giving them everything I have within me.  Making the calls, the appointments, scheduling the therapists, the surgeries.  Trying to understand their special needs.  Trying to overcome my inadequacies and frustrations.

And this is the life God choose for me.  Because He knew I needed this.  I needed them.  Heaven ain't for those who just believe.  This is my Mother Theresa journey.  This is my Calcutta.   And I cling to the hope that saints are just the sinners that fall down and get back up.

why..hello there!

I have dropped off the face of the blog world...and not because I gave blogging up for lent.

I have been busy doing lots of sleeping, eating and otherwise baby growing.  Thank you so much for your wonderful and celebratory words.  Tomorrow I am 9 weeks and "timber" is doing really well.  My 8 week progesterone level came back high, between zones 2 & 3.  Add to that I feel very pregnant...hello stretchy pants.  I am so grateful....SO GRATEFUL to have been given the blessing of maternity again.

I am intensely working on my maternal heart with my therapist.  I had two very very lows in parenting this past month.  An ugly bout of pregnancy hormones led to an ugly bout with anger.  As God's timing and providence would have it, I had a therapy session coinciding with a very bad day.  It is frustrating that my behavior is not changing as fast as I would like.  My mind and heart are definitely being converted and my prayer is that what I am learning will come to mind when it is most needed.

I have recommitted to giving up spanking.  This time no spanking and no yelling for lent.  I read a good article by Dr Sears about avoiding hand spanking as it discourages a natural and healthy curiosity.  This is something my husband had adopted and has agreed to give up, again, as well.

Therapies for my children are on my heart.  We have increased OT services for Catie and began a "sensory diet".  She is deathly afraid of all things fun (sledding, sliding, high swinging, exploring, etc).  I became aware of her height terror recently.  I am hoping the addition of the sensory training will be beneficial.  Meanwhile, I feel Augie is slipping backwards in speech and language.  I keep thinking of Williams Syndrome.  Many of these kids are missed because their personalities shine above their weaknesses.  This is so the case for him.  I am hoping to reopen his case with the therapist that cleared him.

In other news...we just booked a two week vacation to Florida in the mid-spring.  We had hopes of traveling south for Christmas, but with baby due a few months prior, I was not sure about that trip.  Plus I have been dying to visit during the beach months.  One week with hub's family and one week with mine and lots of time with the family in the pool and at the beach.  So. Excited!

Sorry for the hodgepodge.  I have had some beautifully deep thoughts and insights, but am never awake or coherent enough to blog them out.  This post comes courtesy of insomnia.  So, with that, good night/good morning.  I hope to see you again soon.  :)

overcoming anger {day 25} on adoption

So today I want to share a question purposed by the priest in confession two weeks ago.  When he asked, I recoiled.  I did not want to blog about it because I was embarrassed he would even ask such a thing. 

The question: "Are you angry with God for giving you a child with issues?"  "Do you think that if that child was biological, they would have been perfect?" 

When this was asked, nothing about the statement struck me as truth. 
1. I did not feel angry at God.
2. (recited to myself) "I love all my children and there is no difference between them!"

Rosie, my 5 year old biological daughter, has excelled through her developmental milestones.  She is  the greatest joy and a beautiful, incredible miracle. 

Augie is approaching 3.  Catie is approaching 2.  Both are adopted from foster care.  Augie has speech delays, oral stimulation issues, chiari 1 malformation and possibly something else.  He was clinically diagnosed with Williams Syndrome and we are still trying to figure out if he actually has this genetic condition.  Catie was born drug addicted.  She has struggled with feeding issues, feeding tubes, gross motor development, temperament and now eye issues. 

Augie & Catie both receive early intervention (speech, ot, pt) and have been highly involved with doctors and specialists their entire little lives. 

Am I angry with God for giving me a child with issues?

This is a heavy question.  I love all my children desperately and I do not want to live my life without a single one of them. 

Do I feel the same towards my biological child as I do towards my adopted children?

Heavier question. 

I have spent a good amount of time wrestling with the facts.  I did not get to nurse or co sleep with my adopted children.  As a result we turned to cry it out, because I could not comfort them in the same way I naturally comforted my daughter.  Was there early bonding differences?  Absolutely.  Bonding with a foster child takes time.  It is often an arduous process while you are wondering if you can let your heart go there. 

We have an open relationship with Augie's parents.  I hear from her regularly.  My heart is constantly wrestling with the fact that there is another mother out there.  Another father who loves him.  He is mine.  But not quite entirely. 

I am sure I will be dealing with this with Catie before long. 

God has chosen me to be mama to these two special people.  I am so thankful.  I can not imagine a quiet life without them.  I am SO SO SO grateful Rosie gets to be a big sister.  She is an incredible big sister. 

I can not answer the question, but it challenges my heart. 

Adoption would not exist without sin. 

To some degree or another this is all about dealing with the sucky brokenness of our world.  I wish my children were not broken.  I wish my children were all biologically mine. 

Our God is a God of Redemption.  Out of the ashes we rise.  He has given me an incredible mission.  To redeem my children*.  That is my purpose.

* Theologically....I know it is God that is redeeming them.  But when I look up the definition of redemption, it is beautiful.  I am rescuing them and I am claiming them.  I am giving them to God to do the rest.

~~~~~~~~
miracle alert: Yesterday I was talking about PMS knocking on my door. Today my period arrived. What??? Woah?? This evening I asked my husband, "did you notice my pms?" "No." And I am certain my children did not notice. For me, this is huge!

7 Quick Takes

1.  This has been an exciting and wonderful week.  Rosie turned 5!  It is hard to believe.  I am so grateful that God allowed me to experience pregnancy, childbirth and nursing (only after we had decided  adoption was how we were meant to grow our family).  She is a beuaituful little girl and an amazing big sister.  She loves dress up and fairytales more than anything.  She still winds up in our bed sometimes (last night).  She says goodbye way too many times and is our girl, through and through.   

This was just four hours after her birth center birth, as we prepared to go home. 

This was her 5th birthday breakfast.  Pancakes topped with whip cream and sprinkles.

2. As I sit and write this she is in day two of pre-k.  She is a new 5 in a class of 4 year olds.  She is the big kid and probably the oldest in her class.  It seems that from the day your child turns two, people begin asking when are you sending you son/daughter to school.  It is almost like a parental endurance race to see how long you can hold off (at least if you are a stay at home mom).

3.  Suddenly I have two little kids and no big kid.  Right now Augie is watercoloring next to me, something he has possibly never done before and Catie and I are working on potty training, as she is walking around leaving little puddles.  On Wed (Rosie's first day) I took the babies to the library and the playground.  Maybe not a big deal for a mom of one or two, but something I have never done with just them, and rarely do anymore as a group.  I interupt this blog to say "Yay!  Augie just peed in the potty for the second time in a row."  I will consider this time of just us a gift. 

4. I have a penchant for things free and cheap.  If I see something on the side of the road, I always slow down.  Last week I brought this baby home.  She just needs to be cleaned up (covers were off to be washed) and I am thinking of painting the wood work, though hubby votes no. 

I think it was a pretty nice road side couch. It was nice of the family to send their teenage son to help when they saw me, this crazy momma, pulling out the car seats and (trying to) single handly stuff this thing in my SUV. 

5. Car Shopping.  My husband bought a very used conversion van a few years ago for work.  I hate driving it for so many reasons.  When he purchased it (off craigslist) I did not test drive.  It was his car...but, sometimes spouses have to drive the other's car.  Learning from that experience, I just took a potential next car for a test drive.  His vote is for a minivan.  A minivan is tempting me to do a car swap.  Not sure what will happen next, we have the month to figure out.  My greatest hope is we do this debt free...(which is why...dad if you are reading...we are not shopping dealerships). 

6. Additional changes this week.  I have joined the world of smart phone.  Still getting adjusted.  Still not a huge adovate.  It will be nice for when we are on the road and need to look something up (AND I remember to bring it with me).   Also, my husband started his new job and the hours are such an impovement.  We had our first sunday sunday in ages.  A trip to the zoo followed by a polish festival.  Wonderful. 

7.  Here is the result of Augie's work. 

And here is a preview of something I made for tomorrow's "God's Little Princess" birthday party:

 

Happy Weekend.  Thanks Jen!

7 Quick Takes

1.  Angela Faddis.  For those without facebook, you can watch this interview that happened live yesterday on Life on the Rock (about 3.30 - 14.00). 



The song at the close of the interview had me in tears.  I really have no words.  Watch and pray.

2. It seems so trival to post much else after that, but in the way of keeping the world updated.


3. We survived two nights at the beach and camping with stiches.  I think finally I am ready to put an "L" sticker on our car.  We love "our beach".  The weather was perfect, the kids had a great time, no ER trips = success.  

 

 

4. Our well loved tent (of 10+ years) has officially gone in the trash. Not sure if we are purchasing a new tent or something say, a little more pop upish, but we will try to keep our beach on the annual agenda.

 

5. Another reason we love this beach....best crabs + seasoning ever!  I kept Augie busy with the hammer, which probably equalled a top restraunt pick for my two year old as well.  



lazy susans

 

6. In just 3 days my baby turns 5!  Princess party in the works for the weekend.  I think I am more excited than she is.  The actual birthday will be spent chewing lots of bubble gum, as her first age-sanctioned restriction is lifted. 

 

7. Well, I am 10 minutes passed the friday deadline and now publishing on Saturday.  Goodnight all. 

late night quick takes

1.  I am glad this week has come to a clothes close (leaving for posteriety because it speaks to my current state).  It is a week to go down in the history of our family.

2.  Tuesday (head injury at 2pm) to Wednesday (when my baby returned home at 9pm) were the longest 31 hours of my life.  Labor was easier, totally.
For those that are interested in the whole story - obviously not a quick take:
So this morning, after a good night sleep, I can probably share a bit more. After the injury (tues 2pm) we called our Ped. They scheduled us and saw us at 3pm then said they wanted us to be seen by a plastic surgeon. They sent us to the ER where we waited 2 hours until the plastic surgeon then asked us to come back the next day to his office the next morning (at this point feeling a bit stuck, I should have called back to our ped, but it was after 5pm). So...yall saw the posts about surviving the night with Augie and his head laceration. It was a long night. 8.30am arrive at doctors. 9am seen by doctor. he was very nonchalant. I am tired mom with son with lacerated head. Because I fed him breakfast (wish someone would have suggested i not do this) they could not schedule him until 8 hours after eating. He did offer to schedule him for Thurs morning but I did not want to wait another night. So...I choose to occupy my son and not feed him all day. 2:20pm - arrive at surgery center. Get checked in and start waiting. They bring us back to a long room of waiting people and stick us in a private room.  Augie begins to scream and tantrum (no sleep, no food...sort of understandable). He screams for at least 45 minutes straight. People are talking to me and I hear very little of what they are saying. Anesthesia doc comes in and I say "oh thank God". And then he tells me it is going to be a long wait. There are 15 patients in front of us. I beg him for anything and he orders Valium. This calms Augie down and I sit cry in this room alone for well over an hour while he colors on himself with highlighters in a cage-crib. My friend, a nurse, called. I answered accidentally. I am not sure how she heard anything through my blubbering, but she encouraged me to ask for a patient advocate. 5pm. I ask for a patient advocate, she returns and says they will now take him back for surgery. My much needed husband arrives for back up so I can go home.  9pm, the boys arrive home.  Augie looked wonderful, and happy and was eating everything in sight. So, we are doing better this morning. I just wished someone could have seen the whole picture and had compassion.

3. Picture proof. 

My sweet sleeping baby

Thankful for food and eating pizza crust after his arrival back home

4. I am so grateful for friends and prayers.  Without which I could not imagine what might have been.

5.  Next subject!  I am super excited to be "adopting" a friend's college bound "foster daughter".   This is a long story, but my college roomate took in a teenager who has flourished and managed to get herself a couple of full ride offers.  She choose a school very near me and we are happy to be a family away from home to her, since she is oh...about 20 hours from home.  I am so inspired by her story and looking forward to getting to know her better in the coming years.  Please pray for sweet E as she starts college in a land far away from anything familiar.  She will do great. 

6. My husband is starting a new job next week.  Same company, working his way up the ladder.  He will do so great!  We are in the middle of a life transtion.  He has given up his construction business to purse pursue a theology degree.  Along the way he is supporting our family and thankfully working just a few minutes from our house.  This new job means regular M-F hours and the return of a weekend, which will be so good for our family.
 
7. Immaculee Ilibagiza.  She is amazing.  If you have not heard of her, please check out her story via this brief interview.  I am presenting to our parish council about the possiblity of haing her speak in our Church.

Happy Weekend and cheers to the safety of our children and survival of their mothers.

 Jen's Quick Takes

 

adventures in mommyhood

What a crazy 48 hours! 

Sunday night I brought Catie to the ER for an infection on her leg.  She had some bug bites from 2 weeks ago that she had been scratching and suddenly she had hard swollen areas on her leg, arm and back.  This was my first ever trip taking a child to the ER.  I guess she managed to get an infection.  She is doing much better thanks to benedryl, antibiotic cream - and she was placed on antibiotics again. 

Oh and I forgot to mention, but Rosie is also being tested for Lymes.  She has abx prescription waiting for her at the pharmacy. 

So...today.  Augie slipped and fell into the bathtub and lacerated his forehead.  Thanks be to God my husband walked in the door 5 minutes later as I was sitting on the floor frantically trying to dial his number.  After a visit to the ped, we waited in the ER for the plastic surgeon...who was stuck in surgery and rescheduled us for 8.30am tomorrow moning.  So, now I sit...with a lacerated child, praying we make it through the night.

I had to bump back Catie's follow up appointment and Augie's speech therapy to accomodate our morning tomorrow with the plastic surgeon.

Thank goodness for a happy boy...who is watching all the "monkey george" he wants tonight.

7 Quick Takes

1.  I have sat down in front of the computer so many times this past month and started a couple of unpublished drafts. 

2. Will this get published?

3. Construction is moving SOOoooooo slow in our house.  But for the first time ever, we are getting estimates to have a fence installed in our back yard.  It is weird and wonderful to think of hiring someone to get something done around here.  A fence will be heavenly. 

4. Augie - does he or doesn't he have Williams Syndrome?  Refresher, clinically diagnosed but the confirmation blood work has come back negative.  Our pediatrician is sending him for an ECG and developmental pediatrician (on the wait list...it takes a year to get in) to be safe. 

5. Catie...is FINALLY WALKING.  You may remember I posted this a month+ ago.  Well...she walked that day.  Now, at 20 months, she has decided it is better to be upright.  Praise the Lord.  I am no longer scrubbing knees (hers and her clothes).  Orthotic ankle braces coming soon. 

6. What are you listening to these days?
Rosie and I are hooked on "Call me Maybe" and "Jungle Drum"

7. One more week of babysitting the 6 year old.  The first half of our summer was good.  The second half, much more challenging.  Rosie and said 6 year old do not get along more often than not any more.  It is a bit challenging on everyone.  Counting down the days until the end of summer, one last/first beach trip and the start of Pre-K.  Yes...we decided to enroll her at our parish school.

 Quick Takes are brought to you by Jen.

Our Week in Pics

The Backyard Setup

This weekend we started a new tradition.  We read about the "Great American Backyard Campout" and decided it would be a good idea to see if our family of five can really actually sleep together in one tent.  My husband and I love camping and it has been a challenge incorporating kids into the mix.  We are going to brave it on an official trip in a few weeks.

All in all it went well.  My biggest complaint is having a non walker (note her PNP prison).  She loves to roam free on hands and knees but will have to suffer confinement while camping.  Complaint #2, Augie does not settle well to sleep and the tent was no exception.  He was bouncing off the canvas walls until about 11pm.  But, we have done our dry run and are looking forward to camping for real soon. 

Cooking over the fire pit

Happy Girl (for these 5 seconds at least)

 Last night we went to one of our favorite places.  It is a local dairy where the kids can feed hoards of goats, donkeys and a plethora of other animals.  My favorite part is the play area and it is so fantastic to be there on a beautiful night during sun set. 

And just for kicks.  Here is a picture of Rosie playing at the same place when she was >2. 

  And, today Catie & Augie joined me to meet up with a beautiful friend, God's Plan is My Joy.  It is always a gift to spend time with a good friend. 

Our little treasures that help us grow holier by the minute.

Boys are gross!

steeped in motherhood

When I had my daughter after 5 years of infertility, motherhood was sheer bliss.  It was incredible!  I was sleep deprived and it was challenging - but I WAS A MOM!  I had given birth to a precious teeny little angel.  I was the source of comfort, nutrition...love.  I carried her in a sling.  I used beautiful new cloth diapers.  I nursed on demand.  I co-slept.  Attachment parenting to the fullest! 

And then my beautiful, teeny angel became a toddler. 

She was very loud.  She did not love to sleep.  She pulled out all the toilet paper, spilled out all the dog food and wrote all over herself...daily.  At one point she even added a LARGE family portrait to her bedroom wall in marker.  One of her many graffiti art projects.  All the while, she was so precious and, though challenging, we wanted to add to our family more than ever.

 After secondary infertility, we were so blessed to become parents again through foster care. 

Augie came in with a bang.  He was sick.  He took out our whole family for the first month.  As a foster mom the bonding came slowly.  We were not permitted to co-sleep.  Slowly, those not so new cloth diapers were more of an inconvenience when dropping him off for family visits.  My hands were full.  I was content and for the first time ever in my married life, I was not actively seeking to conceive. 

After another year, I had another toddler on my hands.  This one particularly loved to eat dirt.  Also coal, stink bugs and dog food. 

And slowly my desire for motherhood again grew stronger.  I refused to get a family picture because it seemed a spot in our family was missing.  Rosie was praying for a sister.  My heart was open to another child.  And with that, Catie arrived.

Catie can scream like nobody's business.  Same as before, no co sleeping.  By now cloth diapers are lucky to be used as rags once in awhile.  Graffiti is a regular part of our home decor.  And sadly, cry it out is often all we can manage.  By bedtime, i am done. 

With her recent adoption, following Augie's 2011 adoption, my hands and my heart are overflowing.  Six years ago, I would not believe this could possibly be my future.  I am so blessed.  It is helpful for me to take a minute, sit back and see this.

"I know that God won't give me more than I can handle"

And God trusts me quite a bit.  Rosie is 4, Augie is 2, Catie is 1.  All that suffice to say the glow of new motherhood has worn off and I am now fully steeped in motherhood. 

When Augie reached that lovely age of toddler, I felt the strong need to address my PMS.  I added an anti-anxiety med and for awhile that seemed to take the edge off my mood swings.  Well, meds like that add a host of other troubles.  For example, NEVER try to just stop taking them.

After time, that little blue pill wasn't helping.   It was increasingly difficult to respond calmly to a stressful child situation.  One of my New Year's resolutions was to stop spanking.  I am against spanking for so many reasons.  IF (and I don't believe there is) a legitimately good reason for spanking, I was not using those reasons.  I was spanking because I was angry.

Recently I stopped by the Padre Pio Shrine to thank him for interceding and bringing Catie into our family.  I had two kids in the car and really only stopped because I was driving by.  I did not enter a building.  I simply pulled up to this statue, said thank you and touched the stigmata in his statue hand. 

Before my car even got back to the main road, I was sobbing.  Suddenly, the state of my soul was apparent and I had an immense need for confession NOW.  As I continued the drive to see family I was crying an ugly, purgative cry.  Fortunately, I know a few priests and I was blessed to find a confessor and attend adoration...while my family visited with the kids.  Confession is the big opportunity for reset, as my confessor encouraged. 

So now, I am struggling through this.  My greatest hope and prayer is to love my kids with a positive, affirming kind of love.  It has been a good week...but PMS is looming (side note, I am free of the little blue pill (yay!) and working with a NaPro MD on a more natural PMS treatment) I put this out there because I need to.  Accountability?  Prayers?  Yes.  The reality of my parenting is not as beautiful as a blog always seems to indicate.  And so I pray.

Padre Pio, please help!  Help me and all the mothers who struggle to be patient and kind in the midst of stress.  Help us to find the grace necessary to walk away.  Help us to build up our children and not tear them down. 

One of my favorite prayers and the one I am praying for this intention.

The Anima Christi

Soul of Christ, sanctify me
Body of Christ, save me
Blood of Christ, inebriate me
Water from Christ's side, wash me
Passion of Christ, strengthen me
O good Jesus, hear me
Within Thy wounds hide me
Suffer me not to be separated from Thee
From the malicious enemy defend me
In the hour of my death call me
And bid me come unto Thee
That I may praise Thee with Thy saints
and with Thy angels
Forever and ever
Amen

stuck in the middle

Earlier this month Augie was diagnosed with Williams Syndrome. The diagnosis was based on facial characteristics and speech delays and personality consistent with the Syndrome.  It was an emotional week as I explained to friends and family and tried to wrap my brain around what this diagnosis would mean for Augie and our family.

And then a strange thing happened.  The first blood test came back negative.  My initial response was "praise God".  But this did not rule out WS.  WS is still a possibility.  SO, the problem now lies in how far do we go for a diagnosis.

Typical next step is a test called the microarray.  The genetic counselor is researching a next step of a test called gene sequencing (which my brother explains as trying to understand space travel back in the 50s).  Both tests are $$$. Quick estimate from a friend of the sequencing is >5k. 

So, now....How far do we go to confirm or rule out the diagnosis.  Current surveys (from a WS group on facebook) say do the microarray (CGH) to be sure.  I need to confirm cost and then decide our next step.  
Hypothetically, if we were to stop here...what assumptions do I make.  Does he or doesn't he?  I will keep you posted.

today in pictures

Picking itty bitty flowers for mama

Doing whatever his big sister does...but he sure is cute

Sneak Peak

German Chocolate Cupcakes for our beloved uncle kiki

20/20 Williams Syndrome Special

part 1:
Where Everybody Wants to Be Your Friend | Video - ABC News

part 2:
Sunny Personalities, Serious Consequences | Video - ABC News

diagnosed

Today my son was clinically diagnosed with Williams Syndrome.

A few weeks ago my brother, a medical student, mentioned that Augie had textbook characteristics.  I looked it up and was surprised.  Not only by the facial features, but the personality traits.  Primarily speech delays and super friendly, even to strangers.

From early on there have been things going on.  A mother's instinct, you could say.  The first month he was in our care we were at his Pediatrician four separate times.  Dx: bronchiolitis and pre-asthmatic.  He had these mini, mild (never-quite-diagnosed-as) seizures. Even today, I am not sure they were seizures...possibly temperature sensitivity (he wakes up cold and it takes him longer than usual to warm up, he is usually shivering during this time).  His forehead also had an unusual attraction to concrete.

If you look closely at this picture, it has been Photoshopped...along with many others, to attempt to conceal the bruisey head in otherwise cute pictures.  

We first met with a pediatric neurologist around his first birthday.  One tight heel cord led to two MRIs which led to two diagnoses: 1. Possible Tethered Cord (this is a mild form of Spina Bifida....I think this was a 'CYA' dx on the part of the radiologist, I don't think he has this, but it will be monitored over time).  2. Chiari 1 Malformation (an incidental finding that we are blessed to know in the event of future problems). 

Oh yeah...and as I mentioned before, speech delays.  He was in weekly OT from 6-18 months old at which point he qualified out.

So, in a nutshell, we have been hot on the trail of whatever THIS was for a while now.  The conversation with my brother was not a shocker.  It will take about two weeks for a confirmation by way of the genetic test.  But, as soon as we stepped into the geneticist's office, he was throwing out all these words and quickly confirmed the clinical diagnosis.

So, tonight, I read.  I research.  And the reality starts to sink in.

In my reading words like "mental retardation" and "adult day homes" stand out.  As do "shorter life expectancy" and "lack of social boundaries".  I am encouraged that he is highly functioning.  As a whole, he is doing so well.  He is a beautiful, amazing, sweet little boy.  He is my heart.  Tonight my heart hurts a little as I attempt to process what this means for his future.  He has a 50% chance of passing this on to his children (though many WS adults don't have the ability for lasting relationships).  That is one of a long list of what may lay ahead for an adult with WS.

So many random things are running through my head.
- I am grateful for the show Parenthood and processing the idea of life with a a special needs child.
- God intended us to be parents to special needs kids, before we even met Catie.
- I am glad I enrolled Rosie in pre-K to have some time to focus on the needs (and OT appointments) for the babies this upcoming year.
- I am grateful for a Catholic special needs school very near by, and that adoption subsidies would likely cover any cost involved.   

I am sad.  I want to cry.  This will impact our future...and certainly, obviously his.  I know there is undiscovered joy and greater meaning that will be revealed over time.  For now...we are processing.

what we've been up to (in pictures)

In the last 3 1/2 weeks we have:

Driven to Chicago and Back (round trip 26 hours) to visit our 93 year old pra-Busia (great grandmother)

Celebrating Thanksgiving Mass in the Nursing Home with my Brother in Law as celebrant

Stopped at the Flight 93 Memorial on the way home

Boulder Marks Impact Site

Marble Wall marks the Flight Path

and unborn child

I hosted and was the MC at our Advent by Candlelight for ~175 women

Then we hugged Catie and Papa goodbye, drove to Maryland and flew home to Florida for a long weekend


Celebrated Augie's 2nd Birthday in FL with grandparents, aunt, uncle and cousin (and papa via skype)



Threw a baby shower for my sister in law, I made these for my Niece, idea from That's My Letter

Met up with a friend from Alabama

(pic to follow)

Flew Home

Decorated for Christmas, Cleaned House and Celebrated Catie's First Birthday with a Polish Feast (thanks to my husband, our caterer) 

Happy Birthday Catie girl!

And now...we are putting our feet up a bit and preparing for a quiet Christmas. 

Happy 4th week of Advent!