Tessa had her second booth test on Tuesday at Hearts for Hearing. It was a unique experience and very different from the first one she had about a month or so ago. The unaided booth test is performed without her hearing aids and this time we were able to track more noticable responses to sound, probably due to Tessa's improved head control. Darin, me, Tessa and Tami (Tessa's AV therapist) all go into the booth and her audiologist, Kimi, sits outside the booth looking through a window and administers the hearing test. Darin holds Tessa in his lap with her sitting upright with as much freedom for movement as possible, while Tami and I watch Tessa intently to determine her responses to sound. Because of Tessa's motor delay and physical challenges, her reactions to sound are very unique to her.
It is an important process to begin observing Tessa's responses to sound so that when it's time to activate her cochlear implant (CI) in late June, we will be able to notice those similar responses during activation and testing. In the booth, Tessa's response wasn't immediately after hearing the sound, but there was a consistent delay in her reponse. It was very exciting to watch her be consistent, which ultimately tells us that she was hearing and responding to what she heard. It was very apparent to me during the test, that the delay in response is because of Tessa's motor challenges...not necessarily because she wasn't hearing anything. It was amazing to watch, because the longer we were in there observing her, the more I realized that her little brain was working so hard to recognize the sound and then to tell her little body to move in response to the sound. As hard as it is for her to do...she did it, over and over again. Her movements varied slightly between her bringing her hand up to her mouth a few moments after hearing the sound, or the turning or tilting of her head in response to a sound. There were also a few times where she would look at Tami or me thinking that the sound was coming from us....Little Miss Social ;) In general, it is difficult to perform booth tests on young children because you can't necessarily give the instruction "raise your right or left hand to signal when, and in which ear, you hear a sound." So, in many ways Tessa's responses are very normal for a child her age...it does take time to register the sound and have a response. For Tessa, there might just be a few more moments in between her movements and that will just be what is appropriate for her at this time.
We will go through several cochlear implant 'counseling' sessions between now and Tessa's June 7th surgery date. We will be learning about the equipment, the process of mapping and activating the device, the changes to anticipate with Tessa, and so-on and so-on. Tessa will be receiving the Nucleus 5 cochlear device: http://products.cochlearamericas.com/cochlear-implants/nucleus-5-system . As with any surgery, there are benefits and risks with the cochlear implant. One question we discussed on Tuesday was whether or not Tessa would ever be able to wear her right hearing aid again/hear out of her right ear without the CI. The answer is probably not. Tessa will likely lose any residual hearing in her right ear because the implant may destroy any remaining hearing in the implanted ear. This made me pause for a moment, but really, it all comes down to the fact that Tessa won't be able to learn speech and language with her diagnosis of profound hearing loss, so she has everything to gain and very little to lose with the CI. It was a difficult moment, I won't lie. It is a little scary to realize that we will be taking away what she does have in hopes of so much more.
I was driving to work Wednesday morning just thinking about all the new information we learned about CIs the evening before. There's plenty to be overwhelmed by, but lots to be excited about as well! I think I tend to miss a lot of opportunities for spiritual application in my life, but God's been working on me, and He blessed me with a spiritual way of thinking about the cochlear implant process. It's difficult to think about them 'stripping away' what is left of Tessa's own hearing by performing the surgery for the implant. Even though we know the hearing that Tessa does have is minimal, damaged and incapable of giving her the opportunities in life to learn to talk...it is what we know ~ all we know....what Tessa knows and all Tessa knows. Tessa's severe to profound hearing loss and her little pink hearing aids have become our normal and what we are comfortable with. But what we realize is that the decisions we are making today for her ears, are for the impact they will have on her future. The old has to be stripped away in order for her hearing to be made new. When we surrender our lives to the Lord it can feel like we are taking a risk. The way we are, the things we know, the habits we've formed and the comfort we've developed...all these things have to be stripped away in order to follow Christ. It requires us to allow the old/the comfortable to be replaced by the new and holy. Without Him we are minimal, we are damaged and we are incapable of experiencing the opportunities in life designed for His glory and His purpose. It is a difficult thing sometimes to acknowledge how much we need Him, but the gift of salvation is free and ours when we acknowledge that we need Him.
Wednesday morning I was thankful for this spiritual application regarding the cochlear implant process. I believe that God has gifted professionals in this world, from doctors to therapists, to allow us access to hopeful remedies for things damaged of this world. Tessa will be just as God has intended her to be: in some remedies we may find success and in others maybe failure, but the glory will be to the Lord because Tessa's life belongs to Him. As Tessa's mom, this process requires me to have faith...and at times I need a little boost. I think this week I got a kick of what I needed to move ahead in confidence by faith and faith alone. ~Whitney
Thursday, March 31, 2011
Friday, March 25, 2011
Poem: At My Own Pace
A friend of mine at work shared this poem with me today, I love it!
At My Own Pace
My appearance may be different but my feelings are the same.
I laugh and I cry and take pride in my gains.
I was sent here among you to teach you to love,
as God in Heaven looks down from above.
To Him, I'm no different; His love knows no bounds;
It's those here among you in the cities and towns,
that judge me by standards that man has imparted,
but this Mama I've chosen, will help me get started.
For I'm one of the children so special and few,
that came here to learn the same lessons as you.
That love is acceptance,
it must come from the heart;
we all have the same purpose,
though not the same start.
The Lord gave me life to live and embrace,
and I'll do it as you do,
but at my own pace.
Author Unknown...
At My Own Pace
My appearance may be different but my feelings are the same.
I laugh and I cry and take pride in my gains.
I was sent here among you to teach you to love,
as God in Heaven looks down from above.
To Him, I'm no different; His love knows no bounds;
It's those here among you in the cities and towns,
that judge me by standards that man has imparted,
but this Mama I've chosen, will help me get started.
For I'm one of the children so special and few,
that came here to learn the same lessons as you.
That love is acceptance,
it must come from the heart;
we all have the same purpose,
though not the same start.
The Lord gave me life to live and embrace,
and I'll do it as you do,
but at my own pace.
Author Unknown...
Thursday, March 24, 2011
"Living Hope"
1 Peter 1: 3-9
Praise to God for a Living Hope :
(3) Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, (4) and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, (5) who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. (6) In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. (7) These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. (8) Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, (9) for you are receiving the end result of your faith, the salvation of your souls.
I've been thinking a lot lately about what it takes to stay focused on our goals and committed to the things in this life that God has given us responsibility over. I feel I have accepted the roller coasters of emotion that will inevitably follow us on this journey, but I find myself asking 'why' and 'how' a lot. When these questions pop in my head I feel a bit like a failure, but I understand at the same time, that it is normal, and like I said...seemingly inevitable. However, I think the real issue comes when we are consumed by the questions. I think that consumption of anything can rob us of what it takes to stay motivated, focused and committed to the things that God has for us.
I've thought a lot lately about maintaining a 'balance of perspective'. There are so many highs and lows, changes and adjustments, burdening anticipation coupled with tremendous joy. While our lives have taken on new meaning and a new normal...there are days where I catch myself in shock over where we are and the things that we are dealing with. Obviously I can't live my life "in shock", but I also don't feel like it is necessarily healthy to settle into a place of assumption that what we are going through is normal. I feel like I am always learning such unique lessons about life and about what it means to have a "living hope". Our lives have entered a realm in which we cannot ignore the situations and circumstances that are painfully beyond what we are dealing with, but I also struggle with the ever-growing category of things becoming trivial. There is guilt over feeling such sadness for others when our situation pales in comparison to those around us, but there is also frustration and resentment when navigating the trivial that seems to surround us, as well. This is the balancing act that can at times, consume my mind. Guilt and sadness and frustration and resentment do not even come close to resembling the "living hope" that comes from a genuineness of faith.
I want to be healthy, I always want to be pursuing better: for my husband, for my children and for my family and friends. I want to be in tune with my emotions, good or bad, and always recognize where I am at, in order to come out on the other side. Like I said, I have been thinking a lot about how to keep a balance of perspective in my life and about my life. What I have realized, is that maybe the effort to achieve 'balance' has begun to consume me. Acknowledging that there will always be things harder than what we are dealing with, is healthy. Acknowledging that things that once seemed significant, might now be more trivial, is healthy. Living in fear that at any point along the way I might become imbalanced, is not. I don't believe that God calls me to be responsible for maintaining an appropriate 'worldly' balance in my life, I do believe that He calls me to have a genuinesness of faith and a living hope.
All in all, I've realized that in my life and on this journey, I need to spend more of my efforts on God's promises and spend less time being consumed with where I feel like I should be emotionally and in terms of the world around me. I have promises that go beyond this world around me. I have commitments that require me to stay motivated and focused. The balance is not over my feelings of guilt or resentment...the balance for me, is choosing a living hope, to navigate this life God has planned for me.
~Whitney
Praise to God for a Living Hope :
(3) Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, (4) and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, (5) who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. (6) In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. (7) These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. (8) Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, (9) for you are receiving the end result of your faith, the salvation of your souls.
I've been thinking a lot lately about what it takes to stay focused on our goals and committed to the things in this life that God has given us responsibility over. I feel I have accepted the roller coasters of emotion that will inevitably follow us on this journey, but I find myself asking 'why' and 'how' a lot. When these questions pop in my head I feel a bit like a failure, but I understand at the same time, that it is normal, and like I said...seemingly inevitable. However, I think the real issue comes when we are consumed by the questions. I think that consumption of anything can rob us of what it takes to stay motivated, focused and committed to the things that God has for us.
I've thought a lot lately about maintaining a 'balance of perspective'. There are so many highs and lows, changes and adjustments, burdening anticipation coupled with tremendous joy. While our lives have taken on new meaning and a new normal...there are days where I catch myself in shock over where we are and the things that we are dealing with. Obviously I can't live my life "in shock", but I also don't feel like it is necessarily healthy to settle into a place of assumption that what we are going through is normal. I feel like I am always learning such unique lessons about life and about what it means to have a "living hope". Our lives have entered a realm in which we cannot ignore the situations and circumstances that are painfully beyond what we are dealing with, but I also struggle with the ever-growing category of things becoming trivial. There is guilt over feeling such sadness for others when our situation pales in comparison to those around us, but there is also frustration and resentment when navigating the trivial that seems to surround us, as well. This is the balancing act that can at times, consume my mind. Guilt and sadness and frustration and resentment do not even come close to resembling the "living hope" that comes from a genuineness of faith.
I want to be healthy, I always want to be pursuing better: for my husband, for my children and for my family and friends. I want to be in tune with my emotions, good or bad, and always recognize where I am at, in order to come out on the other side. Like I said, I have been thinking a lot about how to keep a balance of perspective in my life and about my life. What I have realized, is that maybe the effort to achieve 'balance' has begun to consume me. Acknowledging that there will always be things harder than what we are dealing with, is healthy. Acknowledging that things that once seemed significant, might now be more trivial, is healthy. Living in fear that at any point along the way I might become imbalanced, is not. I don't believe that God calls me to be responsible for maintaining an appropriate 'worldly' balance in my life, I do believe that He calls me to have a genuinesness of faith and a living hope.
All in all, I've realized that in my life and on this journey, I need to spend more of my efforts on God's promises and spend less time being consumed with where I feel like I should be emotionally and in terms of the world around me. I have promises that go beyond this world around me. I have commitments that require me to stay motivated and focused. The balance is not over my feelings of guilt or resentment...the balance for me, is choosing a living hope, to navigate this life God has planned for me.
~Whitney
Tuesday, March 22, 2011
Sisters
A girl couldn't ask for better sisters. God's done amazing things with the bond we have and the love we share!
I love the way we celebrate life together ~ sharing our struggles and our blessings, our similarities and our differences ~ as wives and as mothers, we celebrate everything amazingly unique, from our marriages to our kids and all that's in between!
Love you both with all my heart!
~Whit
I love the way we celebrate life together ~ sharing our struggles and our blessings, our similarities and our differences ~ as wives and as mothers, we celebrate everything amazingly unique, from our marriages to our kids and all that's in between!
Love you both with all my heart!~Whit
Birthday Celebration
We were able to make a trip to Austin for my nephew Rylan's 1st birthday! He turned 1 on Friday and the party celebration was on Saturday. Tessa and Rylan are just three weeks apart and it was really sweet of everyone to help us celebrate Miss Tessa while we were there too! (Tessa will be 1 on April 8th) We took all the kids to Build-A-Bear and they worked together to make Tessa the cutest little bear...named appropriately: "Rayne-Bow" (good thinking Hill!)
Lindsay made Tessa the most Beautiful cake! Thanks so much Linds...and it was super yummy too! Big brother Parker blew out Tessa's first candle for her :)
Here's the bear-making-crew: Haden, Kelbie, Parker, Keaton and Mason
They did such a good job and all have such tender hearts. It was such a wonderful way for them to love and celebrate Tessa Rayne.
Lindsay made Tessa the most Beautiful cake! Thanks so much Linds...and it was super yummy too! Big brother Parker blew out Tessa's first candle for her :) 
Tessa's sweet Aunts had a great idea of letting the big-kids build Tessa her first Build-A-Bear ~ it was a great way for them to help celebrate Tessa's birthday!
Here's the bear-making-crew: Haden, Kelbie, Parker, Keaton and Mason
They did such a good job and all have such tender hearts. It was such a wonderful way for them to love and celebrate Tessa Rayne.
And here's "Rayne-Bow" - up close and personal ;)
Tessa warming up to her new buddy.
Tessa and Rylan will undoubtedly share a very special bond growing up so closely together. We are so fortunate that Tessa is surrounded by so much love and compassion from her Aunts and Uncles and her five precious cousins. We couldn't have ask for sweeter moments. Thank you all for such a fun weekend together ~ we love you very much!
Tessa warming up to her new buddy.
Tessa and Rylan will undoubtedly share a very special bond growing up so closely together. We are so fortunate that Tessa is surrounded by so much love and compassion from her Aunts and Uncles and her five precious cousins. We couldn't have ask for sweeter moments. Thank you all for such a fun weekend together ~ we love you very much!
~Whitney
Monday, March 21, 2011
Giggles to Share
I love it...I'm barely even touching her and she's still giggling like crazy!
~Whitney
~Whitney
Last Weekend - Sweet Visit
Uncle Tommy and Aunt Lacy dropped by for a visit! It was great to see them and they got in some Tessa-Lovin time while they were here.
Love you guys!!
Love you guys!!
~Whitney
Subscribe to:
Posts (Atom)