Thursday, May 10, 2012

21 Months (and a brief update)

Things I am loving the most right now:  I love how much you are talking! I love watching you transform into an independent, little girl!  I love watching you interact with people and other little kids (you love other kids!). I love seeing you move more freely. You are quite an incredible, determined little girl!

Things you are loving the most right now:  You still love making messes! You love going outside and to parks. You start yelling "PARK!" anytime we pass one. You love your books. You will go to your room, sit down, and pull out all you books and "read" them.  You also love to dance and explore. 

A note to you, sweet girl:  These past couple of months, you have amazed me, sweet girl. You are starting to move more freely and become Little Miss Independent! I am so lucky to be your mom! Even though we have had some difficult moments and it was hard finding out that life may be a little more difficult for you in the future, you are resilient, and strong, and smart. Some days are hard for Mama because I don't know what life will look like as you grow and want to move more. There are moments where you struggle--not knowing how to tell us what you want or needing help getting up and down. That breaks my heart at times. I read a quote the other day that read, "There are no bad days. There are only bad moments trapped inside fantastic days". I hope that, as a family, we can learn to see that quote as true. That we can rejoice in every day as you gain confidence and more movement. Life with Stiff Skin Syndrome is a mystery right now, but we do know that you are a very special little girl. Every person that meets you sees this beautiful, happy, bright little girl. They (and we!) do not see your syndrome as a barrier to life, only an obstacle that you continue to hurdle through! I pray, every night, that you will wake up refreshed and ready for whatever the next day will bring. I pray that God will continue to heal our hearts and make you strong.  A woman on "Parent to Parent of Colorado" shared this poem yesterday, and I wanted to share part of it with you:

It is sunlight
When you practise seeing 
Strength and beauty in everyone,
Including yourself.
It is dance 
when you practise knowing
That what you do
Is the right way for you
And cannot be called wrong. 

Remember, you weren't the one
Who made you ashamed,
But you are the one
Who can make you proud.
Just practise,
Practise until you get proud,
and once you are proud,
Keep practising so you won't forget.
You get proud
By practising. 

From You Get Proud by Practising by Laura Hershey, poet and disability activist.

We'll keep practicing on all the things you want to do, sweet girl! You should always feel proud of who you are. Because who you are, is "beautifully and wonderfully made".

Also, a brief update for friends and family:  Adaline is doing great!! She is walking, starting to "pre-run", and talking up a storm. Adaline sees her PT friend, Susie, every Tuesday morning (they often meet at the park) and is improving by leaps and bounds. We have always been told that Adaline will do things in her own time. She also sees her Speech Therapist friend, Erica, every Thursday afternoon. Adaline has some problems with some sounds (like the long E sound) because her top lip is so stiff! she is getting better and better, though. She recently said 'Eye" with a long E sound at the end! She amazes me. 

Last week, we went to an OT appointment at The Children's Hospital and met with Trudy. Trudy specializes in therapy for burn victims. She offered some therapies for Adaline which, in turn, offered us hope that something may actually work for Adaline's skin!! She suggested kinesiotaping, dynabraces (for Adaline to wear at night for her knees) and myofacial release (a sort of deep tissue massage). We are waiting to hear from Adaline's doctor about how to start these therapies. It feels overwhelming to start all this (on top of her ST and PT already!), but we want to try anything that may help Adaline in the future! I'll keep you posted on all that!

Thank you for your continued support and prayer for our little family. Adaline is the joy of our lives!