Wednesday, February 8, 2012

mid week randoms.

Before I start this post, officially, I would just like to say that the following photos are probably my new favorite group!
 We have a new girl in our house.  A little girl with a binky!  And a side pony.  And she is dressed (not in jammies.)  This is a whole new lady... 
 I believe we are on the mend.  Mabel is still a little 'off' but she is definitely starting to feel familiar to me again.  After sickness, the kids always have an odd feel to them.  With the redheads, I could always tell when they were coming out of it and were going to be 'normal' again.  Mabel's 'normal' is touch and go so it's a little more difficult to judge.  She did get two of her back top teeth through so we are thankful that is over!
 Yesterday I mentioned that therapy is becoming quite difficult for our girl.  It can be discouraging to see her get so frustrated especially when there isn't a great deal of progress being made.  Well, maybe that's the  wrong way to put it.  She's getting a little stronger, for sure, but ultimately we aren't seeing huge gains.  We are praying and possibly thinking of taking a break or at least cutting back on one therapy a week.

It's a difficult decision for me and it weighs heavily.  I have heard of parents whose children have a diagnosis that limits their mobility, strength and endurance who decline therapy each week because ultimately it is more upsetting than beneficial.  That makes sense.  If Mabel had a disease that we knew would stop her from walking, I wouldn't push for her to do so.  It becomes overwhelming and discouraging.
However, we don't have a diagnosis like that--or of any kind--so we want to give her the best chance to do great things.  It can be at a high expense for us, emotionally, but if it pays off in the long run it will be worth it.
 I am so blessed by the people in our lives and the wisdom they share with us.  They love our girl and work with her week after week with such grace and patience.  They come into our home and brighten our day and ultimately, our lives.  I am so thankful that God has allowed me to share in this journey with the people that were so delicately placed in our path.  It's extremely humbling.
 They sure love our girl!  This is Beth, Mabel's occupational therapist.  She wears red most weeks so that Mabel can see her better.  She sweeps our girl up and snuggles her for as long as she needs to in order to calm her.  She sneaks snuggles and smiles.  She never forces Mabel to do anything and is so calm and gentle. She is a breath of fresh air for Mabel.  I watch her rejoice in our triumphs and often times, join in our grief when it rolls in the door.  She has seen great days and experienced really bad ones.  She knows our little lady inside and out and has truly become a key part of our care team for Mabel.  
 Speaking of Mabel...
she is delightful. 
 This morning I visited one of  my favorite blogs.  It's written by a mother of 7 children.  4 are her biological children and she has adopted 3 (one baby and 2 older children!) from Africa.  I adore reading about her life in tid bits and watching her children grow.

But this morning as I opened the page, I felt something a little different and always unexpected.  She is expecting baby #8.  It is amazing and wonderful!
Yet my first thought was, "sigh.  she has all healthy children...of course she can go on to have more..."
I hate thinking this way and feeling such strong feelings of jealousy and sadness.  It's a mixture that stings and fries me to my bones.  Immediately I dismissed my own feelings to congratulate her family because truly it is a wonderful blessing.  It's just one that we will not experience again and that is just one more thing I have had to take time to grieve...
 Daniel and I fought yesterday.  It happens often but it reminds me how truly isolating being a mother can feel...especially to a high needs/special needs/medically complex child.  
My mind is prepared for the worst.  
His mind is stuck in the very superficial present.
We aren't quite sure how to mend the two.
Deeply considering seeing a therapist to sort through some of it [&& I'm thankful he's more than willing to do that.]
We love one another incredibly but this is a road we have never traveled.  We are bound to get it wrong somehow every day but we know it's worth working at--for all of our children and each other.
 We head to Chicago tomorrow for some follow up appointments.  Mabel's eyes will be re-checked and alot of questions will be asked.  I hope that after tomorrow we will have a better understanding of her vision.
Her g-tube button will also be replaced which I'm not looking forward to.  After this appointment, we will be changing it at home every 3 months.  Can you say yuck?
Did I mention she's taking a binky?  
I mean cute is this? 

 Her suck is finally strong enough to keep it in, which is a huge milestone in our opinion.  Plus, she has teeth to bite it so she does cheat a little but who cares, right? 
 It's Feeding Tube Awareness Week this week.  I have been posting a status and photo on facebook each day, hoping to educate people a little more.  Maybe take away the fear and the anxiety around the tube itself and show that it really is super normal to us.  It's been such a huge help for our family!  

 Did I mention she has a binky?  Ah yes.  I believe I did.

 Ok, enough randomness today.  There's a sweet girl crying from the toy room and a young boy lifting his daddy's weights in the living room.  I'm afraid one is going to get hurt and one is about to vomit.  You know, pretty average for 8:30 am on a Wednesday.
 I'll leave you with this:
You're welcome.


gahenard said...

Love these pictures of Mabel, Ramee! It's sooo good to see her enjoying life!!


Mabel is sitting so well! Tell her hi for Ethan and me. Missed you gals at Special Connections on Monday. Hopefully next month when the weather is better you'll be able to make it.

Amy said...

Another great post Ramee. Mabel looks great with the binky!!!She is adorable. Much love & prayer for you & Daniel. I can't begin to understand the daily lessons you are learning as a Mom let alone a wife. God bless you & Daniel as you seek a common ground of understanding & communication.

Sarah said...

Loved the pictures of your little lady today. I know I am not there and do not understand what it is really like, but she looks so darn grown-up lately and so beautiful.

Yay for her binky! That's amazing and I love that you are so thrilled.

~Ariane~ said...

Love the pics!