I wish I could say that I feel we were nearing the "end" for all of Brooke's testing and doctor's appointments.
I don't feel that at all....
Since our appointment with the Geneticist I have had this lingering feeling of unrest and uncertainty. I know that our God is a god that grants us peace even in the most difficult struggles. He has given me peace in knowing that Brooke will have surgery, He has given me peace with her heart defect and the potential outcomes there. He has NOT given me peace about her diagnoses NOT being related and/or caused by something else! I have prayed for peace and I have listened for His whisper.... what I hear is a quiet voice- firm but hope-filled- "Keep pushing. Do not give up. I have prepared you to fight this fight. Push forward. My timing is perfect."
I always have known that the Lord would intertwine my formal training with my family life. I have fought alongside parents as they have sought the best education for their children who are exceptions to "the norm." I have tried to be a breath of fresh air to them as the long journey of swimming upstream has left them tired and, often times, hopeless. When I was in the public school system advocating and teaching these amazing kids I LOVED it! I thrived there! It was exciting.... and exhausting... mostly exhausting...
At the end of each day, I went home. Without those kids. I had respite when their parents had none.
I have found myself in those parents' shoes as of late. Don't get me wrong: Brooke is developmentally ahead of the game. She is downright smart and I have no doubt that she will be extremely successful in whatever the Lord leads her to.
But, my 'gut' AKA: the Holy Spirit is whispering to me as a mother, "Keep pushing. Don't let them miss it..." As the medical bills pile in and I hear the doctor say, "No, she is fine. You are overreacting..." I find myself unable to escape what I know my child needs. Just like those parents from my past... it never leaves my mind- or my presence! She is in my care almost 100% of the time and each time I look at her, I see not only an amazing creation that God has blessed me with as my daughter, but, I see the potential for what the unknown could bring... and the bills.... stinking bills!
We are pushing forward with the Geneticist to have Brooke tested for VCFS. Honestly, I don't even know how to spell it or what it all means! What I do know is that it is a chromosome 22 abnormality that presents in individuals with palate, cardiac, and facial abnormalities. So, not full blown DiGeorge Syndrome, but, a more minor abnormality to some gene(s) that build chromosome 22.
I learned a lot today after talking to a parent whose daughter has this syndrome. A major concern: kids with this syndrome, when having their palates repaired, need a more specialized surgery due to artery displacement and the fact that they have low muscle tone to begin with... WHAT?!
This post could, quite honestly, turn into a book... so... I will cut it short.
Where we stand right now: Brooke WILL be evaluated for VCFS- we just need to find someone who will/can order the FISH test. She will be informally evaluated by one of the leading physicians in the world on VCFS at the next support group meeting (June) and his wife- who specialized in speech/language therapy for kids with VCFS/DiGeorge!
In the meantime, as my new friend told me today, I am strapping on my Big-Girl Shoes and marching against the grain!
Monday, April 16, 2012
Sunday, April 1, 2012
My kiddos!
Here is a quick update on Brooke:
Two weeks ago we saw the cleft palate team- holy cow! 12 doctors in 2 hours time... exhausting!
The consensus was that, although her cleft is extremely mild, that it needs repair.
We will see the surgeon May 3rd to discuss the surgery in detail. We will also schedule her surgery that day.
Last week we saw the Genetecist at DeVos. He is not at all suspicious that Brooke has anything abnormal going on from a genetic standpoint. The icing on the cake for him: her LACK of developmental delay! We are talking about a little girl who understands figures of speech, uses them herself, and is taking in more information each second than we can dish out!
He did schedule us to see him again in a year (which we may cancel), just in case her growth pattern does not continue- slow and steady!
In the midst of all of these appointments for Brooke, we celebrated Shane's first birthday!! I can't believe he is already one! Where on earth did the last year go?!! He had a great time at his birthday party. Shane is quite the opposite of his sister: he does NOT like cake or ice cream! Go figure!
I love watching Shane! He is learning so much right now- tonight he held up his new ball and said, "Basketball." (Of course, it didn't come out super clear, but, Rob and I both understood him!) He has the best demeanor ever and we just can't get enough of him! His kisses and hugs melt my heart!
It's crazy! I see so much of God's masculinity in Shane and so much of His beauty in Brooke! Absolutely amazing!!
Two weeks ago we saw the cleft palate team- holy cow! 12 doctors in 2 hours time... exhausting!
The consensus was that, although her cleft is extremely mild, that it needs repair.
We will see the surgeon May 3rd to discuss the surgery in detail. We will also schedule her surgery that day.
Last week we saw the Genetecist at DeVos. He is not at all suspicious that Brooke has anything abnormal going on from a genetic standpoint. The icing on the cake for him: her LACK of developmental delay! We are talking about a little girl who understands figures of speech, uses them herself, and is taking in more information each second than we can dish out!
He did schedule us to see him again in a year (which we may cancel), just in case her growth pattern does not continue- slow and steady!
In the midst of all of these appointments for Brooke, we celebrated Shane's first birthday!! I can't believe he is already one! Where on earth did the last year go?!! He had a great time at his birthday party. Shane is quite the opposite of his sister: he does NOT like cake or ice cream! Go figure!
I love watching Shane! He is learning so much right now- tonight he held up his new ball and said, "Basketball." (Of course, it didn't come out super clear, but, Rob and I both understood him!) He has the best demeanor ever and we just can't get enough of him! His kisses and hugs melt my heart!
It's crazy! I see so much of God's masculinity in Shane and so much of His beauty in Brooke! Absolutely amazing!!
Thursday, March 15, 2012
Brooke's Cardiology Report...
Today we had our visit with Pediatric Cardiology for Brooke. I could not have been more pleased with our day. The cardiologist was amazing! He was willing to take all the time needed to run the proper tests and educate us on all that is 'unique' with Brooke's heart.
Brooke does indeed have a minor heart defect, that, at this time, poses no threat to her. He did also confirm a functional murmur that is completely unrelated to the defect.
Instead of having a Tricuspid Aortic Valve she has a Bicuspid Aortic Valve.
Tricuspid Bicuspid
With this diagnosis, patients are at risk of Aortic Stenosis (narrowing of the Aorta), Dilation of the Aorta, and "leakage" if the valve does not open or close properly.
The measurements today showed that Brooke has Borderline Dilation of the Aorta- she is right on that 'normal/abnormal' border for having dilation.
What does this mean for Brooke?!!
NOTHING!! - at least not right now :)
She is now, and will forever be, a cardiac patient. Two years from now, and probably every two years from now on, she will have to have an Echocardiogram (an ultrasound of the heart) to look at, and measure, the Aorta and Aortic Valve. If she were to develop any Stenosis or Dilation then the may prohibit her from playing contact sports, participating in strenuous excersice, etc. He reassured us that her Aorta would have to be in extremely bad shape for them to even consider repairing/replacing it.
In the meantime, she is clear for surgery IF the Cleft Palate Team decides to repair that within the next few months and she is free to be a normal two year old!! Yay!!
The LORD is teaching me to trust Him- and of course, He is using my kids! I am at complete peace tonight as we have this minor diagnosis and am sure that Brooke is going to be fine! There is not anything that I can do or worry about that will change the path that the Lord set for her before the beginning of time. Praise be to Him for His wisdom and love for Brooke!
Thanks for the continued prayers from all of you- we see the Cleft Palate Team next week and the Geneticist the following week (with Shane's first birthday in the middle)!
Blessings to all!
-B
I added a couple of diagrams below for your viewing pleasure :)
Brooke does indeed have a minor heart defect, that, at this time, poses no threat to her. He did also confirm a functional murmur that is completely unrelated to the defect.
Instead of having a Tricuspid Aortic Valve she has a Bicuspid Aortic Valve.
With this diagnosis, patients are at risk of Aortic Stenosis (narrowing of the Aorta), Dilation of the Aorta, and "leakage" if the valve does not open or close properly.
The measurements today showed that Brooke has Borderline Dilation of the Aorta- she is right on that 'normal/abnormal' border for having dilation.
What does this mean for Brooke?!!
NOTHING!! - at least not right now :)
She is now, and will forever be, a cardiac patient. Two years from now, and probably every two years from now on, she will have to have an Echocardiogram (an ultrasound of the heart) to look at, and measure, the Aorta and Aortic Valve. If she were to develop any Stenosis or Dilation then the may prohibit her from playing contact sports, participating in strenuous excersice, etc. He reassured us that her Aorta would have to be in extremely bad shape for them to even consider repairing/replacing it.
In the meantime, she is clear for surgery IF the Cleft Palate Team decides to repair that within the next few months and she is free to be a normal two year old!! Yay!!
The LORD is teaching me to trust Him- and of course, He is using my kids! I am at complete peace tonight as we have this minor diagnosis and am sure that Brooke is going to be fine! There is not anything that I can do or worry about that will change the path that the Lord set for her before the beginning of time. Praise be to Him for His wisdom and love for Brooke!
Thanks for the continued prayers from all of you- we see the Cleft Palate Team next week and the Geneticist the following week (with Shane's first birthday in the middle)!
Blessings to all!
-B
I added a couple of diagrams below for your viewing pleasure :)
Thursday, March 1, 2012
A promise...
In chapter four of the book of James a promise is made that I am clinging to and claiming today.
"Draw near to the Lord, and he will draw near to you."
Quite frankly, this week I've been a mess- for no apparent reason! I have been on the verge of a full blown panic attack (or what I can only imagine is one coming) for three days now. My heart racing, the anxiety building- choking the life right out of me... THIS IS NOT ME!
It is so strange- just when I start to feel a little momentum I hit a brick wall that is so hard and so high that it plain knocks me right out. Flat out. Cold. Whoa.
Today, by God's mercy and grace he gave me this promise, once again. When I needed it the most.
His whisper: "Bethany, just draw near to me. Everything is fine. I am here. I know what I am doing. Trust me. Move into me and I will wrap you in the safety and power of my love. 'Fear not, for I am with you. Be not dismayed, for I am your God! I will strengthen you, yes, I will help you. I will uphold you with my righteous right hand.' "
I will not be anxious about tomorrow, next week, or next month. I will not fear the unknown. I will trust that my Lord is moving mountains in our lives and that, in His perfect timing His will will unravel before my eyes- when that happens I will look back at today, and yesterday and remember how much time and energy I wasted being anxious.....
Finally.... peace!
"Draw near to the Lord, and he will draw near to you."
Quite frankly, this week I've been a mess- for no apparent reason! I have been on the verge of a full blown panic attack (or what I can only imagine is one coming) for three days now. My heart racing, the anxiety building- choking the life right out of me... THIS IS NOT ME!
It is so strange- just when I start to feel a little momentum I hit a brick wall that is so hard and so high that it plain knocks me right out. Flat out. Cold. Whoa.
Today, by God's mercy and grace he gave me this promise, once again. When I needed it the most.
His whisper: "Bethany, just draw near to me. Everything is fine. I am here. I know what I am doing. Trust me. Move into me and I will wrap you in the safety and power of my love. 'Fear not, for I am with you. Be not dismayed, for I am your God! I will strengthen you, yes, I will help you. I will uphold you with my righteous right hand.' "
I will not be anxious about tomorrow, next week, or next month. I will not fear the unknown. I will trust that my Lord is moving mountains in our lives and that, in His perfect timing His will will unravel before my eyes- when that happens I will look back at today, and yesterday and remember how much time and energy I wasted being anxious.....
Finally.... peace!
Tuesday, February 28, 2012
A little bit of this...
... And a little bit of that. Actually, mostly doctors' appointments for Brooke. That is what "life" has consisted of over these last 2 months. She loves going to the doctors! Ha! Probably because she has never had any shots...
She said yesterday, "I'm not afraid of the new doctor!" She was so proud of herself.
It's been challenging at times- not to let my mind wander to the "what ifs" of the situation. I have come to the conclusion that Brooke is fine! She is right where God wants her! Her life has been laid out before time began and no amount of worrying from me will change any day of her life. So, that's that. We wait. We drive. We meet with multiple specialists. We "collect" all kinds of bodily secretions (fun!). And then we do it all again! But most importantly, we trust!
The Lord has taught me so much about himself through this process and a book that I am reading entitled Practical Theology for Women. It should actually just be called Practical Theology because EVERYONE needs to read it! I have thought about reading it again when I am done so that I can journal/blog my way through it. What the author laid out for me that hit me square in the face when I needed it the most was this:
God is good.
God loves us.
GOD IS WISE!
It doesn't matter what I want- who am I to tell God how to run the show- He is wise beyond all measure and has a purpose in everything that He does. He brings beauty from ashes; hope from sorrow. I have clung to that over the last few months as we have faced a myriad of "struggles" in our family.
I want to write more. To let you all know of the struggles and joys and just plain "life" we have experienced over the last several months... but... I can't.... not yet.... Soon though!
We are content in our struggles. We are hopeful for tomorrow. We are clinging to the promise that God's wisdom is so much greater than our own!
She said yesterday, "I'm not afraid of the new doctor!" She was so proud of herself.
It's been challenging at times- not to let my mind wander to the "what ifs" of the situation. I have come to the conclusion that Brooke is fine! She is right where God wants her! Her life has been laid out before time began and no amount of worrying from me will change any day of her life. So, that's that. We wait. We drive. We meet with multiple specialists. We "collect" all kinds of bodily secretions (fun!). And then we do it all again! But most importantly, we trust!
The Lord has taught me so much about himself through this process and a book that I am reading entitled Practical Theology for Women. It should actually just be called Practical Theology because EVERYONE needs to read it! I have thought about reading it again when I am done so that I can journal/blog my way through it. What the author laid out for me that hit me square in the face when I needed it the most was this:
God is good.
God loves us.
GOD IS WISE!
It doesn't matter what I want- who am I to tell God how to run the show- He is wise beyond all measure and has a purpose in everything that He does. He brings beauty from ashes; hope from sorrow. I have clung to that over the last few months as we have faced a myriad of "struggles" in our family.
I want to write more. To let you all know of the struggles and joys and just plain "life" we have experienced over the last several months... but... I can't.... not yet.... Soon though!
We are content in our struggles. We are hopeful for tomorrow. We are clinging to the promise that God's wisdom is so much greater than our own!
Tuesday, January 3, 2012
Sick....
I just about made myself sick.....
I just realized that for the past several weeks I have gone through much of my days really having not seen my children. Obviously I have SEEN them, but, I haven't really taken the time to SEE them....
Quite honestly, I am not sure when the last time was that I looked into Brooke's beautiful, big, brown eyes just to SEE her. And Shane....well... he's walking now... but, I haven't really celebrated that with him...
Wow- reality has hit me with a blow to the gut that leaves me unable to catch my breath and desperate to turn back the clock to relive all of the moments that I have missed. What's even more annoying is that I have missed moments and opportunities to minister to my childrens' hearts because I have been too busy trying to keep "order" in the house.... REALLY?!
Things are going to change... NOW! Tomorrow is a new day, Praise God!
Thank you, Lord, for the whisper to "WAKE UP!" Forgive me for neglecting my children... your children.
I just realized that for the past several weeks I have gone through much of my days really having not seen my children. Obviously I have SEEN them, but, I haven't really taken the time to SEE them....
Quite honestly, I am not sure when the last time was that I looked into Brooke's beautiful, big, brown eyes just to SEE her. And Shane....well... he's walking now... but, I haven't really celebrated that with him...
Wow- reality has hit me with a blow to the gut that leaves me unable to catch my breath and desperate to turn back the clock to relive all of the moments that I have missed. What's even more annoying is that I have missed moments and opportunities to minister to my childrens' hearts because I have been too busy trying to keep "order" in the house.... REALLY?!
Things are going to change... NOW! Tomorrow is a new day, Praise God!
Thank you, Lord, for the whisper to "WAKE UP!" Forgive me for neglecting my children... your children.
Sunday, December 11, 2011
A Reminder...
I have a friendship that I have grown to cherish. One that has developed briefly in person, but has grown through distance and... go figure... the internet! My friend Alissa shared what was reiterated by a new friend this week http://alissaellingson.blogspot.com:
Ecclesiastes 3 (NIV):
A Time for Everything
1 There is a time for everything,
and a season for every activity under the heavens:
2 a time to be born and a time to die,
a time to plant and a time to uproot,
3 a time to kill and a time to heal,
a time to tear down and a time to build,
4 a time to weep and a time to laugh,
a time to mourn and a time to dance,
5 a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,
6 a time to search and a time to give up,
a time to keep and a time to throw away,
7 a time to tear and a time to mend,
a time to be silent and a time to speak,
8 a time to love and a time to hate,
a time for war and a time for peace.
9 What do workers gain from their toil? 10 I have seen the burden God has laid on the human race. 11 He has made everything beautiful in its time. He has also set eternity in the human heart; yet[a] no one can fathom what God has done from beginning to end. 12 I know that there is nothing better for people than to be happy and to do good while they live. 13 That each of them may eat and drink, and find satisfaction in all their toil—this is the gift of God. 14 I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that people will fear him.
15 Whatever is has already been,
and what will be has been before;
and God will call the past to account.[b]
16 And I saw something else under the sun:
In the place of judgment—wickedness was there,
in the place of justice—wickedness was there.
17 I said to myself,
“God will bring into judgment
both the righteous and the wicked,
for there will be a time for every activity,
a time to judge every deed.”
18 I also said to myself, “As for humans, God tests them so that they may see that they are like the animals. 19 Surely the fate of human beings is like that of the animals; the same fate awaits them both: As one dies, so dies the other. All have the same breath[c]; humans have no advantage over animals. Everything is meaningless. 20 All go to the same place; all come from dust, and to dust all return. 21 Who knows if the human spirit rises upward and if the spirit of the animal goes down into the earth?”
22 So I saw that there is nothing better for a person than to enjoy their work, because that is their lot. For who can bring them to see what will happen after them?
Ecclesiastes 3 (NIV):
A Time for Everything
1 There is a time for everything,
and a season for every activity under the heavens:
2 a time to be born and a time to die,
a time to plant and a time to uproot,
3 a time to kill and a time to heal,
a time to tear down and a time to build,
4 a time to weep and a time to laugh,
a time to mourn and a time to dance,
5 a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,
6 a time to search and a time to give up,
a time to keep and a time to throw away,
7 a time to tear and a time to mend,
a time to be silent and a time to speak,
8 a time to love and a time to hate,
a time for war and a time for peace.
9 What do workers gain from their toil? 10 I have seen the burden God has laid on the human race. 11 He has made everything beautiful in its time. He has also set eternity in the human heart; yet[a] no one can fathom what God has done from beginning to end. 12 I know that there is nothing better for people than to be happy and to do good while they live. 13 That each of them may eat and drink, and find satisfaction in all their toil—this is the gift of God. 14 I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that people will fear him.
15 Whatever is has already been,
and what will be has been before;
and God will call the past to account.[b]
16 And I saw something else under the sun:
In the place of judgment—wickedness was there,
in the place of justice—wickedness was there.
17 I said to myself,
“God will bring into judgment
both the righteous and the wicked,
for there will be a time for every activity,
a time to judge every deed.”
18 I also said to myself, “As for humans, God tests them so that they may see that they are like the animals. 19 Surely the fate of human beings is like that of the animals; the same fate awaits them both: As one dies, so dies the other. All have the same breath[c]; humans have no advantage over animals. Everything is meaningless. 20 All go to the same place; all come from dust, and to dust all return. 21 Who knows if the human spirit rises upward and if the spirit of the animal goes down into the earth?”
22 So I saw that there is nothing better for a person than to enjoy their work, because that is their lot. For who can bring them to see what will happen after them?
I was absolutely hit square in the face with the fact that this "season" of life will, eventually, come to an end. I was hit even harder with that fact when, today, we celebrated my daughter's second birthday. I found myself looking at her twirling in her new dress from her great-grandma, singing and dancing, realizing that she is no longer my baby, but, she is now an independent, extremely energetic and opinionated toddler.
Over these past few days, I have been reflecting on my visit with my new friend, Jen (view her blog at http://jenwagenmaker.blogspot.com). We talked, she shared her heart for ministering to other women, challenged me to be praying how I could join her in the mission... but, it was how she ended our visit that has stuck with me...
She said, "You are looking at yourself now- in the overwhelmed state of exhaustion with two young kids two and under. I am looking at you a year from now- looking at what you will have to offer other women and, specifically young moms who are exactly where you are right now..."
Then I read Alissa's blog post and Ecclesiastes 3..... whoa...
Lord, forgive me for my lack of contentment in this "season" that you have me in. Bring me to a place of contentment with you and only you; with where you have placed me, what you have me doing, and whom you have called me to serve. It is not until I am fully content with you and the circumstance that you have me in that you will reveal to me the next "season" you have for me....
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