Sunday, June 28, 2009

A reflection of the day

I sat in a white rocking chair in terminal E at Charlotte, rocking back and forth and back and forth as I pondered on the information and events from the weekend. The layover between flights was very long, and I couldn't wait to shower kisses upon Jay and the kids when I returned home, but I was enjoying this last long bit of silence for thinking...and prayer. I sat and rocked for 2 hours and talked to God throughout this time. "It's all so overwhelming...I need guidance. Please God, show me what to do."

The one thing for certain that I pulled away from the mito symposium was that we need a doctor specializing in mitochondrial disease organizing Nathan's care. I met with the mito doc from Houston (the closest clinic to us) on Friday morning for a few minutes, and it was the first time in Nathan's 16 months of life that someone actually had an answer to the whys and hows of the complexity of his medical issues. She understands this disease...and I wanted to hug her and thank her and carry her home with me to meet the fam and all our friends. Seeing a mito specialist is something that we have been putting off until he is more affected, but this meeting made me realize that he needs to see one sooner rather than later.

As a parent, I want to do everything in my power to research and learn and understand this disease in order to help my son thrive in this difficult journey. I want him to see the best doctors and get the best treatment. I know that every other parent with a child with a chronic illness will say the same thing. And even though we think that nothing will hold us back from storming the medical community to get only the best, some things do indefinitely get in the way. Money is one of them.

Now, I hate to talk about money. I hate it. But I must in this instance, in order to explain my reason for telling you this. Yes, having a child with a chronic illness/disease is expensive. Very expensive. Thankfully, God has provided in many amazing ways for our family throughout this time, and we also try to be frugal and attentive to what we can afford and what not. The symposium that I just attended was a rather expensive was well worth the information acquired, and I hope to attend more symposiums in the future if able...but yes, it was a bit expensive. I only tell you that to lead into my dilemma for the day...

In my quiet time staring out over the tarmac outside of Concourse E today, I kept conversing with God: "I feel like we now need to see a mito doctor, but I am afraid to spend more money on plane tickets and such when I just took this pretty expensive trip. Please direct my ways. Show me what we need to do and when to do it."

"But verily God hath heard me; he hath attended to the voice of my prayer." Psalm 66:19

Waiting at the departure gate, there was a voice over the loud speaker: "If there are any volunteers willing to take a later flight available, a voucher will be awarded." On an important personal note...I don't like change! My husband will tell you first-hand that I am very resistant to any type, shape or form of change around me...a flaw, so to say. I have a really hard time with change. Due to that, I am NOT a risk taker. The lottery, the slot machines, the stock market...I would be happy if they were all banished, as I see no pleasure in them whatsoever because of the risk. And saying this, I want to express that I was really missing my husband and kiddos at this the point where I swore off even thinking about them lest I erupt in tears. Summary: not a risk taker + missing family = not a good candidate for a risky move to give her seat away for a flight home.

BUT...after the attendant made the announcement, I had a sinking feeling that I needed to try for that voucher she was mentioning. This freaked me out because I DON'T TAKE RISKS!!! I don't normally go outside of the realm I know. But something kept gnawing at me to go ahead and try it...just become a volunteer.

I made the walk...all the way up to the podium. My first question: "Does US Airways fly into Houston and Cleveland?" (These are the cities that house the 2 mito clinics we have been discussing previously about attending.) The answer was a deciding "YES!" I gave away my boarding pass still somewhat reluctantly with the afformation of "You'll probably still be on this flight, but thanks for volunteering." Turns out, another passenger volunteered before me, and they only needed one volunteer.

Fast forward to boarding time...after the boarding was complete, they decided to board the other volunteer and left me sitting at the gate. I was nervous. Had I made the right decision? Was my heart leading me the right way? My very nervous stomach caused me to visit the bathroom in the interim, but when I got back the lady called my name and informed me that I was booked for a flight home that was just an hour later and also given a $250 voucher for any flight within the next year. Essentially, a free (or almost free) flight to any destination.

God is so good. I had been asking earlier in the day if it was wise the spend more money on a plane flight so soon, and He provided that additional flight for me. After receiving the voucher, I gathered up my belongings and found the nearest bathroom stall to cry and thank God for his mercies. He answers has been very evident to us over our lifetime, but it is still so sweet to witness each time.

We do now know that we will be taking Nathan to see a mitochondrial specialist in the next few months, but the question of "who" is still not clear. Our hearts are pointing towards the ones in Houston and Cleveland, and we just don't know who will be best for Nathan. This is our prayer now...that God will show us directly what is His will for the next step.


April and Robert on June 29, 2009 at 12:04 AM said...

Such a sweet story and wonderful blessing! I have been praying for you and your family while you were gone this weekend. I hope that the Lord continues to bless you all as you travel through this journey. We love you!

Texas Mom on June 29, 2009 at 12:09 AM said...

What an amazing story. It brought tears to my eyes. I am so glad that you enjoyed the symposium. I thought of you often and wondered how it was going. Thanks for sharing.

Heidi on June 29, 2009 at 12:25 AM said...

((Amber)) In this case, the risk was worth taking. Im so glad you found the courage and now have that voucher! Yes, I wish we didnt have to think about $$$ when it comes to our precious kids, as we all want the best for them. Im sure either of these Drs would place Nate in good hands but understand the the difficulty of this decision. Continued prayers for your family - Heidi and little Jack.

The Whitsitt Family on June 29, 2009 at 1:29 AM said...

What a wonderful story. I am glad your prayers were answered. May God continue to bless your family.


Rodney Chandler on June 29, 2009 at 8:31 AM said...

20 Now unto him that is able to do EXCEEDING ABUNDANTLY above all that we ask or think, according to the power that worketh in us,
21 Unto him be glory in the church by Christ Jesus throughout all ages, world without end. Amen. (Eph 3)

Kim and Asa on June 29, 2009 at 9:25 AM said...

Tears, Amber, all I have is tears of joy and blessings! I had that exact same prayer a few months ago! We decided to have a yard sale to get our $$$. Our "perfect" location fell through (at the last minute) and we "settled" for our #2 option. On the drive over (we live in the boonies!) I kept praying that God would send the people!! Well he sure did!!! We couldn't even get the stuff out of the car!!! They were digging through our boxes as we pulled out of the van! And we had nothing of great value! But God multiplied those $1s and $5s into $10s and $20s! We raised more than I ever imagined! God is so good!!! He is always faithful to give us what we need! Thank you for this story that fills my spirit!

Kim and Asa

Anonymous said...

What an awesome story! You are truly inspirational! Linda

Melodie on June 29, 2009 at 12:09 PM said...

Thanks for sharing this story.. a great reminder for myself to give it up to God. Yes we are in different situations, yet somehow similar.. no questions asked, we owe Taysen's life to the SMA specialist we see.. you will never regret taking him and i just got chills reading and knowing that you will be able to do this!! thank you Jesus!!!

Anonymous said...

I needed a good cleansing cry!! You and the family are always in our thoughts and prayers.

We Love You!


Amanda on June 29, 2009 at 3:33 PM said...

Thanks for sharing. It always does me good to hear of how the Lord is blessing those that I care about!! Can't wait to see you!!

Anonymous said...

I am so glad you are home safe and the wonderful news that you shared. God is the "I AM". I know He is because HE DOES!
Love ya,

TracyVDM on June 30, 2009 at 5:05 PM said...

God is so amazing! I'm so glad things have worked out for you the way that they have!

Love, Tracy

Kayla on July 2, 2009 at 3:27 PM said...

Amber, I love to hear the stories that show God listens, knows our needs and always provides. Thanks for sharing. Let me know what you decided to do about a doctor. My family lives in Houston and I know they would be willing for you to stay at there house. That could possibly save you a good amount of money.

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