A Simple Prayer

Abby's first day out of school, and it's not going the way I had planned. Starting at 7:30 trying to do ABR; finally giving up for a while at 11 and realizing I had only gotten 47 min accomplished. Gosh! Feeling frustration building, hearing Josiah crying in his bed asking to get up, I finally decided to go for a very brisk walk. This was a good idea. I had about 45 min to just listen to my ipod and try to regroup.

You know the feeling you get while you are listening to some great music that you love? You don't hear anything else but the instruments, the singer and your own thoughts about the song. Some how it always seems that music speaks my language so much better than any words I might try to sputter out. Chris Rice is one of those musicians for me... his music truly speaks to my soul. Several songs in particular tug at my heart... I thought I would just share one that got me today.


My Prayer
Chris Rice

Fresh page, new pen
Where do I begin
Words fail, tears come
I need someone
To take the thoughts I almost think
And carry them to God for me

Deep breath, exhale
Breathe in deeper still
Long sigh, I’m still numb
Is there anyone
Who can find the things I’m barely feeling
And give them wings beyond my ceiling?

Right heart, wrong place
It’s too far to outer space
Sorry, I forgot, You’re right here
I cup my hands around Your ear
I feel you smile, You feel my breath
You listen while I whisper non-sense

Simple exchange
Your will, I’m changed
And now my prayer ends
Thank You, Amen.

Copyright 2000 Clumsy Fly Music (ASCAP)

You can check out a portion of this song and others at this site:

http://www.chrisrice.com/music.php?id=3

Sticking with it

I can't describe our daily activities now without emphasizing ABR! It might seem some days that it has consumed our family dynamics in every way. I'm always looking for a quiet, free moment to set Abby up in her cozy spot to work on ABR. Those moments are few and often difficult to carve out of the day.

I find myself running around in the mornings while Abby is at school like a crazy person, hair sticking straight up, clothes carelessly thrown on, trying to get as much done as possible before Josiah eats lunch at 11. In spite of my earnest efforts, our house still looks messy and there is about 10 things I can see that need to be done when sitting in any one spot.

This is the point in life after making a very important decision where the grind of it starts to feel very real, and you wonder if you temporarily lost your mind when you committed to it. It takes a chunk of your energy and leaves you with the realization that it still wasn't quite enough... just a number to write on your chart. Those of you who are presently in the ABR journey probably understand what this feels like.

This past weekend we drove to TN to visit our sweet family. We had so much fun spending time with people we love and celebrating a special wedding. I had to let some of my nature to "stick to a schedule" go... ABR was not a priority this weekend, although it haunted me. I suppose I have to strike a balance b/w "real life" and "ABR life". We didn't accomplish anywhere near the hours we had hoped for but at some point I guess I have to learn to relax!

This is Abby's last week at pre-school and then we step into Summer! I'm really looking forward to having her at home with us again... although I realize how little I will be able to get done. ABR will be our focus for the next 3 months, and hopefully we can build up to 3 hours a day as planned! Over the weekend we watched the DVD's of Abby's assessment and intro to ABR. It brought back my focus and helped remind me why we decided to plunge into this challenge... to HELP our Abby! How did I let the discouragement of the day get in the way of our goal?! This really might change things for her. She is our gift from the Lord and He has given me this opportunity to learn. It's actually become a nice bonding time for the two of us.

I feel renewed and am ready to keep plugging away... it's time to stick with it!

ABR Canada

We're home from our week long adventure in Montreal, Canada... and what an adventure it was! Our ABR commitment is now in full swing.

After getting bumped from our second flight last Saturday, spending the night in DC in a dumpy hotel, enduring two more flights on Sunday and 3 hours of driving we finally made it to the ABR center in Montreal 3 hours late for the first event. Although it couldn't be helped we still felt frustrated and very tired. Fortunately the ABR staff was flexible and arranged for us to make up the presentation that we missed later in the week.

Monday we started our intense training. Driving to the center from our hotel proved to be more of a challenge than we had bargained for. It was a good thing my mom remembers her years of French that she took in school b/c we didn't see very many English signs to follow!

Three trainers devoted their time to coach three sets of families, at three different times during the day, to perform ABR on their children. Our group met at 4-6:30. There were four families in our group and we got to know each other as the week progressed. I really enjoyed being with other families who could share the emotions and fears of raising kids with significant special needs. Our dreams for our children were one and the same although each child has their unique challenges to overcome. We want to see our kids succeed in life, even if that "success" looks very different than most peoples' definition. We want them to be healthy, comfortable, content, seizure free. To be able to sit up in the bath tub, to enjoy eating... the list could go on and on.

Maybe with ABR we will have the privilege of experiencing some of these things with our kids. The hope is tangible, the determination is fierce and with time the progress will surely follow.

Abby's evaluation with Leonid was very eye opening. He pointed things out that no one else has ever noticed, although Patrick and I have observed them for 3 years now. He explained the reasoning behind much of her weaknesses and pointed out the target spots that ABR will help improve. Abby will have a file that will include loads of photos taken at each eval session, along with video, so we can see her progress unfold at 3 month intervals. In one years' time we all hope to see some significant structural changes.


Here is Abby comfortably positioned for ABR. I was learning how to build the "Dome" of towels.

We quickly discovered that Abby became so comfortable when the ABR was administered correctly that she promptly fell asleep!





Here I am practicing the the shoulder exercise. Looking at Abby's face, you can see that she's not sure what to think of this. Eventually she resorted to relaxing while sucking her thumb.



This is the jaw/larynx exercise. So far this is the hardest one for me.



This trip was such a neat experience for me and a wonderful time for my mom and I to spend some great time together. She was a huge help with everything, but especially in entertaining and caring for little Josiah! Thanks mom, I love you!

Our travels home were almost as exciting as our journey up to Montreal. There were too many funny and irritating experiences to list in this post, but they will make for good story telling some day.


To my incredible surprise and relief I came home to my wonderful husband who had spent hours making a special bench for Abby's ABR therapy!!! It was all put together in our garage when I pulled into our driveway... waiting to be admired. I really couldn't believe it. What a super gift of love, time and sweat. Now we are ready to get started! Thanks Patrick, I love you so much!

Sweet Josiah along for the ride... smiling as usual.

Another Crossroad

We find ourselves at yet another crossroad. In our constant search for anything that might help our little Abby I came across a radical new form of therapy. (I should say new to me)

It's called ABR: Advanced Biomechanical Rehabilitation

Because of my few blundering attempts to describe ABR to therapists and family, I will let the inventor speak for himself. This is taken directly from Leonid Blyum's ABR website. (www.blyum.com)

"ABR is a unique biomechanically based rehabilitation approach for children and young adults with brain injury that brings predictable recovery of musculoskeletal structure and motor functions."

"ABR is the method of structural correction of musculoskeletal deformities. It is a hands-on method performed by the parents who learn the ABR technique and receive individual prescription of applications from the ABR professional staff."

"ABR in a nutshell

Everyone believes that a CP child has poor functions because his/her brain is too damaged to be able to control normal movements. Respectively CP children are considered incurable because the brain damage is irreversible.

ABR has a different philosophy. We believe that even the badly injured brain has enough electrical plasticity to allow control of normal motor functions, however, for this plasticity to become activated, a child's musculoskeletal structure has to be improved to a sufficient level - to the so-called plasticity threshold."

"While it is commonly believed that a brain injured person needs specific training of his/her motor function - trying to make "better use" of a structurally deficient musculoskeletal system - ABR shows that true biomechanical structural improvement of the musculoskeletal system automatically converts into motor function progress, eliminating any need of specific training to perform motor tasks. Motor function develops as a "spontaneous" result of structural normalization."

"Unfortunately, in traditional medicinal practice the internal organs are looked upon only from the viewpoint of chemical metabolism, while, on the other hand, the biomechanical approach does not normally focus on anything other than the classical skeleton comprised of «muscles and bones».

Strengthening of the smooth muscles induces gradual growth of internal pneumatic capacity, which in a cascade effect restores: volume, shape and strength of the neck and trunk, normal alignment of the joints of the limbs, eliminating spasticity and contractures, normal volume and then strength of weakened skeletal muscles, normal alignment of the shoulder girdle and arms as well as pelvis and legs - allowing normal "insertion" of arms and legs and thus making proper movements possible.

Moreover, restoration of muscular skeletal structure re-establishes normal metabolism (flow of blood and oxygen supply) of 'defective', atrophied muscles and, in addition, normal electrical ascending activity to the brain, opening wide the "back door" to function." (Back to post) These are just a few statements about ABR on their website. We have found this method of rehab really fascinating. It makes a lot of sense. After reading as much as I can find on ABR I am amazed to see pictures and read stories about the progress some children are making. We are considering and praying about taking Abby for an evaluation. Unfortunately for us this form of therapy is only taught in Europe, Asia and Canada. If we decide that ABR would be a great option to try with Abby, we will be taking her to Montreal Canada at the end of October 2007 for an initial evaluation with the inventor, Leonid Blyum. You can read more about him on their website: www.blyum.com We would spend one week at the center, including two hours of instruction and training each day. Mr. Blyum will prescribe specific exercises to do on Abby after her eval and than his staff will train us to do them properly. This decision to go forward with ABR will require a HUGE commitment in every way for our family. We are required to travel to Canada once a year and then three more times to a satellite center, probably Chicago or Florida for follow up assessments and adjustments to the therapy plan. All center visits will require a week of our time... this means I will probably end up taking Abby alone, leaving Patrick and my little boy behind. ABR is also very expensive. Of course we won't allow expense to keep us from doing what is best for our girl, it just makes the decision to move forward more difficult. Lastly, ABR is measured in hours performed on the child... so they ask parents to commit to 3 hours a day of therapy!! This is going to be a very big challenge for us as much of Abby's day is taken up by tube feedings, resting after the feedings, time at preschool and sleeping. We will have to develop a much more structured approach to her awake time. I guess this post has become long enough. More thoughts on ABR coming soon... once we learn more about it. Any input from families already using ABR with their kids is very welcome!!

Birthday Magic

Photo and video editing at onetruemedia.com

"Good bye heart, hello son."

We never thought we could lose our hearts again after giving them to our beautiful little girl. Somehow our hearts GREW so that we could give them away again... to our little Josiah.

One year ago today our little family grew by one precious little munchkin. I can't believe it's been a year since Josiah Lee was born. My pregnancy with him felt so long since we went 2 weeks over our due date. We never expected to even reach that day, much less go over. We celebrated each day, each week and each doctor appointment that we had. How the Lord blessed our hearts with a "fully baked" baby! Josiah's presence in our lives has been like a healing balm, soothing spots of emptiness and longing for normal things we felt we lost with Abby.

Every smile, every giggle even every cry has been so reassuring and a bit of a special surprise. We didn't know what it was like to bring a baby home just days after birth, without the apnea monitor, preemie clothes and dreaded pump! He even eats and poops without any drama. Although many may never understand why this is so precious to us, I don't think it will ever cease to amaze me how even the simplest of healthy, bodily functions is a miracle.

This past year has brought with it many moments of laughter, sleepless nights, feverish cries and silent tears as we have had the privilege of watching our son grow from a new born to a cruiser. How is time allowed to slip through my fingers like that.

It's clear that Josiah and Abby already have a special bond. One reason we were so hopeful to have another child was so that Abby could have a special friend who would always love her, protect her and be with her even after we were gone. I know that's what God has given us in Josiah. He snuggles up to her on the floor and hugs her legs. He sits next to her and plays quietly, almost like he knows she just wants him near. I really think he will be able to communicate with Abby and maybe even translate for her better than we can in the future.

He is a special little boy.

HAPPY BIRTHDAY JOSIAH!

Mommy and Daddy love you more than words can say. You are a treasure to us and we are so glad God put you into our arms. He is going to use you in mighty ways as you grow into a man.

What a precious, little, blond munchkin you are!

Enough

Are we doing enough?

A question that plagues my mind often. Especially after going to doctor or therapy appointments with Abby. Each visit reveals just how many things I haven't done to help her.

Do I stretch her legs enough, do I practice oral feeding with her enough, do I give her enough water, do I keep her busy enough at home, do I feed her slowly enough, do I give her enough calories, do I put her in the gait trainer enough, am I signing with her enough etc. The list could go on, but I think you get the idea.

Monday morning we went to seating clinic at Children's Rehab to have her kid's Kart adjusted and talk about getting a stander for Abby. We arrived at 8 am and I was prepared to hear about all the things I probably haven't done enough of. As soon as I thought this I was informed that her legs have more 'tone' (or stiffness) to them, and asked if I am stretching her throughout the day? Yes... I do, but probably not enough.

Today I woke up late after a long night with a feverish and crying baby. I rushed like a mad woman trying to get Abby dressed, changed, fed, hair brushed, afo's on then shoes and hearing aids. Before I knew it we were out the door running very behind. I knew that I probably should have let Abby's tummy rest before we hurried to the van, but I hate being late!!!

So off we went and not 30 minutes after I got home I got a call from her teacher
"Um, Abby just threw up all over the place and we are having to change her clothes... is this normal or should we be concerned?"
Well, I can't say it's really 'normal' but it does happen occasionally, especially when she doesn't get enough time to rest after feedings before she is moved.

Another 30 minutes later: "Abby just threw up two more times, I think you need to come and get her."

This all just to say that it's days like today and Monday that makes me wonder again, Am I doing enough?

I already know the answer. Of course I will never do enough. But if I trust my Lord to provide wisdom and strength at the needed times, I don't have to worry that I'm failing. God holds Abby in the palm of His mighty hand, and He ultimately provides all of her needs. He is the one with the perfect plan, not me. He did entrust her special life to us to care for and cherish, but as I start to wonder and worry about her future, He gently reminds me:

"I've got this one."

Deafblind documentary

Recently we were made aware of this website through a touching story about the world's only known, deafblind triplets. This family experiences unbelievable challenges every day with their 6 yr old girls. The Triplets were born at 25 wks gestation and suffered many of the same battles that our Abby did while in the NICU.

Retinopathy of prematurity took their vision. Time spent on the vent along with multiple antibiotic treatments stole their ability to hear. My heart literally felt as though it was crumbling as I watched their story unfold... too much of it was so familiar.

Deafblindness is such a deep, curious, seemingly untouchable disability. As a mother I often feel completely helpless as I watch Abby crying out, or yelling while kicking her legs... not knowing what she needs or wants. I can only imagine the extreme difficulty of taking care of 3 "Abby's".

In order to raise awareness about deafblindness, a documentary has been made featuring these triplets. My mom ordered a copy of the film for our family and I can't wait to see it. Every day thousands of preemies are born, and many of them are as small as our Abby was. Some of them will glide through the NICU without any lasting health problems to take home with them... others will live every day in stride, learning how to accomplish the most simple of tasks with extraordinary effort and frustration.

Because so many "micro preemies" are living past their days in Intensive Care there will be a growing number of deafblind infants and children in our life time. I am really encouraged that this issue is finally being made public so that more people will know and understand the struggle... and maybe a few of these people will feel led to become trained to help deafblind children.

This is our hope for Abby. Friends who can 'talk' to her, and play with her in her language. Mom and Dad who can see the heart of their child and reach in with comfort and love, the way she needs it.

Connection with her world without fear or reservation.

Check out this site, I think you will be blessed by it.