It is late and I really should be sleeping, but I just can't seem to sleep tonight. I just crept to the girls bedrooms to make sure that they were both sleeping soundly and my heart began to ache. They are both more than fine, sleeping soundly, and dreaming sweet dreams but my heart is simply overwhelmed by all that has happened this year and in the last 10 days. I just had to pause beside Rachel's bed and thank the Lord for all that He is, for all that He has done, and for all that He has taught us this year.
There is so much that I have not shared about Rachel's surgery and so much that I need to write down so that we can have a journal of all that God has done and is continuing to do for Rachel.
This coming Christmas day will mark the one year date of our precious daughter's journey. You see, her daily headaches began on December 25, 2008. Little did we know then, that these were no ordinary headaches and that she would be soon diagnosed with a rare brain malformation called Arnold Chiari I.
It has been the most difficult year for year for Rachel and for all of us. It has been so hard to watch her suffer, but it has also been a great year where we have learned first hand that God is all-sufficient, that His grace IS enough, that nothing is too difficult for Him, that He is our Strong Tower, His care for His children can be so tender, being in the very palm of His hand provides strength and peace that we would not have known in our own strength or in our own power, and that He is over it all and He absolutely cares about every single detail of our lives.
I have known all of this about Him before, but now I KNOW that I know. I hope that makes sense. He has deepened our faith and our walk with Him. There is NO WAY that I could have survived this year without Him! No way! I don't know how unbelievers do life without the Lord, do you?
With the Lord's help, we tried to live life this last year as normally as possible and I tried to document most of that on this blog, so I'll just start my reflection on the day before Rachel's surgery because you already know about the wonderful Skillet concert 2 days before her surgery. What a delight from the Lord that was both to Rachel and to Hannah.
The day before the surgery, we tried to let the girls sleep in at the hotel. Mr. Incredible and I didn't sleep a lot that night so I was up early and trying to quietly get ready for the day. He was so sweet to go to the lobby and grab me a cup of hot coffee. The girls woke up ready to face the day and to somehow "stay busy," as Rachel put it. I helped Hannah put Skillet pictures on her facebook, blogged a little, and waited for the girls to get ready.
We decided to go have brunch at La Madeline. It was a delicious treat. Rachel finished her brunch with a creme brule while her sister looked on. (Hannah had chosen strawberries Romanoff instead) Rachel shared a bite with Hannah and Hannah responded by saying, "that makes me so emotional." I gave a nervous chuckle not knowing quite where Hannah was going and then asked her, "Why? Is it because your sister gave you a bite?" She laughed and said, "No! Creme brulee is just so good~it makes me emotional!" Then we all laughed. Hello! Drama Queen.
We finished brunch and then headed to the nearest Ft. Worth mall to do a little shopping. While we were there, the girls noticed a santa's village. I grabbed a quick shot of them with my i-phone. (Hannah's glasses are not real, they are from the Hawk Nelson/ Skillet concert and she thought they made her look a little bit like Taylor Swift. We saw a young mom and her daughter at the mall and they thought she was Taylor Swift. So, naturally, Hannah wore the glasses all day long!) Ha!
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We did a little more shopping and then it was time for our pre-op appointment at Cook Children's hospital. I had already pre-registered by phone but we still had to wait in a roomful of parents and children and it was stressful and loud and a bit chaotic...and I began to become very uneasy. Thoughts like, "What if this is not right? What if something happens tomorrow? What if...what if...what if?" began to flood my mind. Huge tears flooded my eyes. I had tried to be so strong...and now I was on the verge of losing it! It wasn't long before Rachel's precious hand grabbed mine and said, "It's going to be okay. This is God's plan for me." And I tried not to become a puddle on the floor.
Just in perfect timing, this young girl came over and asked me, "What car do you drive? Where do your girls go to school? What kind of dogs do you have? What's your favorite color?" (Where is your mother? I thought to myself. Because at this point I was talking to the Lord pleading with Him that I didn't feel comfortable here and I thought this was where He led us but it was chaotic in there and I was ready to take Rachel and run far, far away!) Mr. Incredible, must have understood the look on my face because he began answering the young girl's questions.
It wasn't long before it was time for her to go with her parents and we all kind of relaxed a little bit. I felt the stress fall off just a little bit. It wasn't long before she returned and she started again, "What kind of car do you drive? Where do your girls go to school? What kind of dogs do you have? What is your favorite color? and my favorite question, "Those look like Sketcher shoes....what brand is that?" I nearly laughed out loud. In my mind, I said to the Lord, "You are good. All day long you have provided distractions so that we could enjoy our time together before surgery and at just the right moment when I was ready to take Rachel and run, you provided a very humorous distraction. You are good, I said!" We nicknamed the little girl, who was probably 13 years old, Dorey (like from Finding Nemo). Obviously she had short term memory problems, which is not a laughing matter, but she did provide a humorous distraction.
It wasn't long before Rachel's name was called and we were sent to a room to sign some more waiver forms. The lady there is a wonderful Christian woman, she was there when Rachel had to be admitted last February. I was reassured once more that we were exactly where God wanted us to be. Five minutes later we were headed to the surgical floor where we met Tracy and Kim. The both were extremely compassionate and reassuring of the care that Rachel would have. They had the best things to say about Dr. Roberts. Kim should have been off duty, but somehow (divine intervention) she was still at work and her friend Tracy asked her to take Rachel's blood. We learned that Kim was the best of the best and that it was unusual for her to still be at the hospital at that time. We smiled and told her that she was an answer to prayer.
The blood work went easily, our questions were answered, pre-op instructions were given, and soon we were on our way back to the hotel. We all felt so much better about it all and we were so thankful. Once again, we had reassurance that this was exactly where we needed to be. Don't you just love how God loves us and leads us?!!!
We met up with the grandparents, Aunt Sissie, Uncle Gib, and my brother to have a meal at Rachel's favorite restaurant. While the surgery was heavy on our hearts, it was nice to be together. We knew that the next day would come all too quickly, so we headed back to the hotel to try to get some sleep.
Amazingly, Rachel slept very well. I think her daddy and I saw nearly every hour that night. We literally prayed, slept a little, and prayed some more, all night long. When it was time, I got ready, Hannah got ready, and while Mr. Incredible was getting ready, I had the privilege of fixing Rachel's hair. She didn't wake up scared, she woke up ready for surgery. She knew without a shadow of a doubt that this was what needed to be done and that her Savior was coming to save the day for her...and I marvelled at her inward beauty and grace.
We arrived at the hospital by 5:30 am for her 7:30 surgery. They were having 110 surgeries that day. Wow! There were so many early surgeries that they had to take Rachel's blood pressure in a room with another girl who was all of 2 years old. The toddler did not like being at the hospital and she screamed at the top of her lungs the entire time. Rachel looked at me and then shook her head as the nurse took her blood pressure....which was completely normal....mine on the other hand was probably through the roof. Rachel remained calm under the stress and the pressure of the little toddler's tantrums. At one point I looked at Rachel and said, "If you start screaming, I am going to lose it" and we both giggled.
In what seems like 15 minutes, they had a private pre-surgery room for Rachel and we were so happy to go there. Mr. Incredible and Hannah were there waiting for us. Rachel put on her gown and they noticed that she still had her toenail polish on (we did take off her fingernail polish). While they got Rachel ready for her IV, Hannah got down on her knees and took off Rachel's toe-nail polish. It was the sweetest picture!
The nurses finished and gave us some time together before the neurosurgeon came in. My parents and Mr. Incredible's parents joined us where we all had the great privilege of praying over Rachel. We all held hands and prayed. My tears quickly began to flow as I once again dedicated our daughter back to the Lord. I reminded Him of all of the dreams and plans that He had for Rachel and that is when I once again asked Him to sing over her and to whisper His great love for her in her ears the entire time she was in surgery and that we trusted Him and to please, come and do what only You can do.
Our precious, precious daughter didn't cry. She told me days later, that she almost cried but that she had asked the Lord to give her strength for that day. She was a living testimony of Deuteronomy 31:6 that says, "Be strong and of good courage, do not fear or be afraid of them; for the Lord your God, He is the one who goes with you. He will not leave you nor forsake you," and of Psalm 27:14 that says, "Wait on the Lord; be of good courage, and He shall strengthen your heart; Wait, I say, on the Lord!" and of Isaiah 41:10 that says, "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." He kept her in the very palm of His hands (Isaiah 49:16).
We knew it, Rachel knew it, and everyone taking care of her knew it too. Kim made a point to come in before they took Rachel back to surgery just to let her know that she too would be praying for her. God is so good! We met with the doctor and the nurses and anesthesiologist that would be with Rachel and then we were told to give her some love. It was just the surgical team, Rachel, her daddy, Hannah, and I in the room. Her nurse, Lewis, had her laughing as he wheeled her down the hallway. He asked her if she wanted to pop a wheelie and she giggled.
We watched Rachel wave to us and then the door closed...and then hand in hand, Mr. Incredible, Hannah, and I made our long walk to the waiting room where our excruciatingly long wait began.
Our family members met us there. The Lord was so near but the magnitude of what was happening made it so hard for me to even catch my breath at times. The wait was agonizing! I kept reminding myself that Lewis, the surgical nurse, had promised to call me every hour. We were thankful for family and friends who generously waited anxiously with us. One of my mom's dearest friends generously took the time to meet us in the waiting room. It was a sweet reunion, even in the midst of all that was going on. Here is my mom (on the left) with Glenda:
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Hannah stayed pretty close, although there were times that she was more than happy to go on a short walk with one of the grandparents. Lewis was so good to call every hour and let me know what was going on and how Rachel was doing.
She was in a special Instant MRI suite for the surgery so that they could determine just how much of her posterior fossa to remove and if the dura would need to be opened. Lewis called me to let me know when they began the actual surgery and that he would call me with an update within the hour. That was the most agonizing time because it was nearly an hour and a half until he called again. His first words to me where, "I am so sorry Mrs.___, Rachel is doing very well. There are no complications, I just forgot to look at the clock." I was so relieved! Yes, "The Lord is near to all who call upon Him, to all who call upon Him in truth. He will fulfill the desire of those who fear Him; He will also hear their cry and save them" (Psalm 145:18-19).
It wasn't an hour later before he called me to let me know that the surgeon had completed phase I, and that they would be doing an MRI to see if the dura needed to be opened. We all sent out texts and prayer requests letting people know that this was the crucial part in the surgery and that we were praying that the Dura would not have to be opened, but still trusting that God was over this too, and that we wanted His perfect will in this process.
Another hour passed and Lewis called me to let me know that the surgeon was satisfied with the surgery and that they would not be opening the dura and to expect 45 minutes to an hour to close up, another hour in recovery, and then we could see our daughter. Glory! Praise, you Father!
I know this was a lengthy post. If you are still with me, thank you! My eyes are getting heavy. I think I can now get some sleep. I'll try to post Part 3 some time tomorrow.
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