Where We're At...

Mostly I write this blog as a journal - a way to remember what we did with our days.  In some seasons of life, it's been an effective tool for keeping friends and family aware of specific prayer requests and updates such as in surgeries.  In many ways, it is a simple way for me to keep many informed.
And, I hope, that it has been an encouragement to other moms who may find themselves becoming a parent of a child who is different.  I often write with them in mind - because in each of my pregnancies, I found myself desperately searching for a mom who had been there.  I wanted to feel less alone.  I wanted to know how she did it.  I wanted to have practical questions answered and I wanted to see kids with differences just doing regular life.  I was desperate and often came up short in my quest.
It is my sincere hope that this blog offers that to other moms.  I get emails almost daily from someone who has stumbled here who is pregnant or a new mom or perhaps an adoptive mom to a child with differences.  And they share their story and I find new friends who know the unique heartaches and incredible joys to be found on this journey.

I have often tried to be vulnerable - the joys always outweigh the painful days.  Always.  But there are difficult days.  We've dealt with cruel children and cruel adults and I've shared many of those experiences.  We've had difficult, exhausting days with doctors and therapists.  I've been overwhelmed by insurance and paperwork and a full calendar.  I've spent over two hours side by side with a friend changing a horrendous diaper while my daughter was in a spica cast and survived to blog about it.  We have certainly struggled and I have wanted to share these experiences because they are a valid part of our life and we grow through them and they make our victories and joys so much more precious.  (Trust me - no regular old dirty diaper can ever compare to that experience. Ever.)

I have also tried to be cautious - to always keep in mind that as I share stories, there are some details I don't want to share online.  There are some medical things that should remain private.  This will never be a share all kind of blog.  It just won't.  I have to protect my kiddos' privacy and that of our family.  So there may be times where I am vague on purpose.  Or I may not always discuss our medical stuff.  On purpose.

That said, we've noticed that the medical side of raising two children with different diagnoses ebbs and flows.  We certainly have seasons that seem to be full of doctors and other seasons seem to just have a few appointments.  Some seasons of life seem manageable and filled with "free" days.  Others are full.

I haven't blogged in awhile about we're we are at medically.  In part, that is because we are in a full, overwhelming season medically and so I'm cramming in our free time with friends, blue berry picking, swimming, playing, movies, more swimming, farmer's markets, cooking new recipes, swimming some more, reading more chapter books, and night swimming.  (Whoever coined the phrase "lazy days of summer" has never spent a day in our life.)  Pictures coming soon of our summer days.  Blogging just hasn't always made the agenda.

But in between the fun, we are doing a lot medically.  So a quick (somewhat purposely vague - sorry) update on where we are at... (usually, we are quite literally piling in the car after the appointment to run and do something FUN (because it is summer & we will have FUN!) immediately after!

Ellie:  Working her tail off in physical therapy.  She wants to walk so badly.  We want her to walk so badly. She wants to be upright and my back hurts from trying to help her achieve that.  She does PT 2x/week.  She does OT monthly and has added speech therapy.  Yay.  We could all use a break from so  many therapies but we have a few goals to achieve before we take a little break.  I so so so want my girl walking and sitting up independently.  She will get there.  And we will party.  But it is not without a lot of hard work and prayers begged in the quiet of the night.  And a lot of hard work both at therapy and at home with our various therapy tools and equipment here.
Her splints are driving me crazy.  They don't stay on very well - anyone out there with AFO experience?  Any ideas on perfect socks that won't show so much dirt from her scooting and yet will hold on those darn AFO's?
She is really cute and makes funny faces and cracks jokes now.  She also LOVES to swim.

Well.  We've added two new docs for him recently.  We've entered some medical fields that weren't really familiar to us before but are rapidly becoming very familiar.  Will has an incredible ability to express himself and convey his desires and thankfully, we have doctors that listen so R & I are prayerfully seeking counsel and trying to determine the best treatments to help him reach his goals.  If you think of it, will you pray for our wisdom?  We have so many factors to consider and the answers are not always easy.  Because of what he has dealt with over the years in terms of things others have said to him about his body and his differences, Will is struggling with nervousness about going to certain places and dealing with kids who have incessant questions or stare.  He continues to amaze us with his courage to face new situations.  Yet my heart aches as I struggle to help him and as I too get tired of feeling like I am constantly educating kids where ever we go on the proper and appropriate etiquette for being around someone who is different.

Right now, I'm facing approx 5 appts a week.  Some are at the same location so if I combine those - it's more like 3-4/week.  Which is kind of a lot.  I am fighting to keep two days/week free for playing or doing something fun or just hanging out at home.  I'm feeling more dependent on my mom lately as she helps me with childcare or managing one child while I take the other to an appt.    Will often goes with me to Ellie's appts and for a four year old, has developed a lot of maturity as he entertains himself while Ellie is treated.

So - that is where are at.  Kind of.  Medically at least.

We are also having TONS of fun and I'll post soon some of our pics from recent fun (& one particular not so fun blueberry picking incident)

3 thoughts:

Catie Maves said...

Check out this blog. She reminded me of Ellie.

Catie Maves said...

Check out this blog, she reminded me of Ellie.

ywilbur said...

I 'got' my guy when he was 4.5 so maybe it is just my lack of experience but 4.5-late 5's seems really hard in terms of shyness around questions. JK got so aware of the other kids, he wanted to play with them and show off his cool toys or costumes, etc... and it got really old and annoying and frustrating for him to deal with questions vs play. Now though at 6.5 I see him mellowing out more and deflecting questions so much better. He still has his shy times but is mostly back to his 'original' ways where he focused more on what he was doing and less on all the kids around.
It helps that he's bigger now, looks like a mini-body builder, and more able to verbally deflect kids through tone.

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