Monday, July 23, 2012

Something is Coming....

I have this sense of urgency to DO something! Anything! Already my words cannot do my thoughts justice as I sit contemplating what it is that God is calling us to DO. For too long our family has been centered around 'us'- the four of us- our needs/wants/desires.

I am over it.

God has been stirring my heart and my mind has finally caught up.

My epiphany.

My ah-ha moment.

This life, it's not about us. It was never intended to be about us- our desires, wants, and needs. Life is about bringing glory to our Lord and being the hands and feet of Jesus to the world. Being the Light in the darkness.

There can be no darkness in light.

The shift is here. No more will we be inward focused and self-seeking. We are earnestly praying and seeking that Lord will reveal to us how we are to reach out and serve Him. I have no idea what that will look like- but, honestly, I don't really care. I will do what He asks; I will go where He tells me to go.

Of course, even in writing this my mind has already gone to the "Oh gosh... what is God calls us to the jungles of Equador? Or the Sahara Desert? What will we do about Brooke and her cardiologists and cleft palate team....?"

Blah blah blah!

He will provide a way. It probably won't be moving halfway across the globe, but, the fact is that I have to be willing to do WHATEVER it is. And I have to be ready to love on people the way Jesus did!

Oh, Lord, prepare my heart and equip me with your Truth.

Something is Coming!

Monday, July 9, 2012

Gluten Free, Dairy Free... Everything Free!

This is my first post about living in a family with a limited diet. Probably what prompted this is the fact that we are going to an out of town wedding this weekend, and, I have been overcome by the amount of food prep that awaits! Luckily, my cousin has quite a few people attending that have been diagnosed with Celiac Disease/Non-Celiac Gluten Intollerance, so there will be food for us to eat... Even cupcakes! Score!
I, embarassed, called my cousin (the bride) to ask about the menu. I felt like an idiot- especially for a wedding- but- you have to know.

I read an article in a parenting magazine about having kids with food allergies- how often times we as parents of these kids feel like we have four eyes when we call before birthday parties to ask what will be served.  Trust me, we do not enjoy doing this. Nor do we enjoy the time it takes to then prepare something comparable for our kids to have at the party so they don't feel completely alienated and out-of-the-loop. But, you do what you have to do! At the end of the article it talked about things parents of non-allergic kids can do to help us out. Here are a few:

- Offer the menu up front to all parents
- Ask if there are any food allergies/sensitivities
- Do NOT be offended if you have a parent call to ask what is being served ahead of time
- Do not be offended if parents ask to stay at the party (especially parents of little ones) to monitor

It takes a ton of work and time to plan outings, events, playdates for families that suffer from food allergies. Haha- if you ask me to come for lunch, I may say, "No." Especially if it's a short-notice invitation. It's nothing against you- it just takes more time that I often have to get the meal around!

Some tips for parents who are struggling through the early days of food allergy identification:

- Make items in bulk and freeze them! (cupcakes, icing- which doesn't freeze solid, bread, granola bars, etc)
- Keep some snack items in the diaper bag or car (baby food pouches, fruit strips, pre-packaged bars, etc)
- Alternative milks now come in individual serving boxes (like juice boxes)- stick some in the car/diaper bag
- Be up front with friends/family. They may not "get it" at first, but, they will eventually!

As for me... I am off to make a gluten free, dairy free, nut free PB&J.... ;)

Happy Eating!

Saturday, July 7, 2012

For Such A Time As This

For Such A Time As This 

My friend, Virginia, had a guest writer on her blog... soo encouraging- I just had to share!

Enjoy

Friday, July 6, 2012

MIA

I have no idea where on Earth the last three months have gone. They seemed to have vanished... right before my eyes! Last I wrote we were going forward with Brooke's genetic testing to rule out VCFS... and... Praise God... she does not have it! Woo!!
Since then, she has also done some growing (we think). We go in two weeks for a weight check. And, of course, Shane now outweighs her by at least a pound! He is a brute and is definitely our strong willed child! Whew! He keeps me on my toes!
God has been doing amazing things in my life over the past three months. One of the main reasons for my absense in blogging was to focus more on my quiet times and journaling my prayers. It has proved to be such a blessing and God is proving himself as Jehoveh Jireh! I am hoping to start blogging again at least once a week, and, hopefully, will even join Twitter soon (although I have no idea- still- how to blog effectively, and, "tweeting" is something completely foreign to me!).
I hope to start learning more about these things and make some time for little sewing projects with the help of my new friend, Virginia! She is my guru for all things blogging, tweeting, and sewing! Ha! Love ya girl ;) You can follow her blog at http://geekyandsassy.com/. She is amazing and God has blessed me with her friendship at a time when we both desperately needed to connect with someone close and in the same age/stage. Although we have only known each other for just over a month and a half, it already feels like a life long friendship!
Looking forward to connecting more via the blog world soon!

Monday, April 16, 2012

A Mother's "Gut Feeling..."

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!

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!!

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.
Bicuspid Aortic Valve Picture
                                                        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 :)

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!

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!

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.