Baby Steps

This is going to be a short post, those of you who actually read this are probably saying….it is about time!  HA!  I am quite long-winded at times!

The Lord is truly beginning to answer prayers and for this we are so grateful!  These are baby steps right now but we are making headway with Aetna!  We found out last night that Aetna has approved for us to have 2 visits/consultations with Dr. Dabal, Hannah’s surgeon in Birmingham!  This is HUGE!  We have not been given approval for the heart cath and surgery yet, but we are thinking that once Aetna is able to hear from Dr. Dabal and his recommendations, that it shouldn’t be any problem to have the heart cath, surgery and UAB approved!

We are still asking you to keep praying!  Pray that Aetna will agree with Dr. Dabal and that they will allow him to perform Hannah’s cath and surgery there at UAB, no questions asked!  I am thrilled that Aetna is taking the steps forward, thinking more about the health of a precious 6 year old, than the cost!

Please keep praying…..God is hearing and answering!

The Fruits of the Spirit as taught by Hannah

The Bible says in Galatians 5:22-23 But the fruit of the spirit is love, joy, peace, long-suffering, gentleness, goodness, faith, meekness, temperance.  Against such, there is no law.

The Dictionary defines each one as follows:

Love – feeling of warm personal attachment; affection

Joy – great delight; happiness

Peace – mutual harmony

Long-Suffering – enduring injury or trouble

Gentleness – kindness

Goodness – virtue

Faith – confidence; trust

Meekness – humble; patient; compliant

Temperance – self-control

 In my last post, I said that I would tell you what Hannah has taught me.  Well, in my 40 years of life, I have never known anyone that was able to teach me the fruits of the spirit by living them out on a daily basis.  I learned this verse as a child in church, but never applied all of it to my life.  I would apply it when I could, but certainly, in my opinion, there was no way to live it all out everyday.  I thought that until I had Hannah.

Now, before I go on, I am not saying my child is perfect!  By no means is she perfect.  She has her flaws, she sins, she can be defiant, naughty and disobedient.  But, on a day-to-day basis, even with her being a child, I have seen more of Jesus in her than I have in any other person alive.  I wondered for a long time why God chose me to be her mom.  I had no clue what the Lord had to be thinking.  I wasn’t ever angry at Him and I have never looked at Hannah as being anything less than a miracle and a blessing, but I did wonder if the Lord had possibly made a mistake by choosing me.  It hit me about 3 years ago why God chose me……He chose me, for no other reason but FOR ME!  Hannah truly changed me….I won’t get into how I was prior to having her, but I will say…..I am definitely NOT the same person.  I needed to change and He knew just the way to make that happen.

I read Galatians 5:22-23 several years ago and looked up the meaning to each “fruit” and it was amazing that I have had to learn and I am still learning how to portray the fruits of the spirit, a very difficult thing for this OCD, control-freak, type A personality individual.  But, I look at my daughter, a little girl that is so different because of one little chromosome and I see the fruits of the Spirit in her DAILY life.  I don’t just see it here or there, I see it daily!  It was almost like she was born knowing “how to live it out”, not learning it first and then having difficulty applying it, like I do daily!

She amazes me at how much she loves….my little girl doesn’t see white or black; rich or poor; male or female; old or young….she loves everybody!  She is full of joy and happiness all the time! She lays her head on her pillow at night and is asleep before you finish praying, so peaceful….nothing going through her head that would keep her awake.  She has endured 2 open-heart surgeries, 6 ear tube surgeries, 1 G-tube surgery, 1 heart cath, tonsil and aednoid surgery, an endoscopy, 2 MRI’s, many illnesses and hospital stays and other things and has done it all with a smile on her face….if that isn’t long-suffering, I don’t know what is!  She is the kindest person I know, always wants to “help”.  She is so good, seriously, it is rare that I have to really get onto her.  Her faith is astonishing….she prays about everything, not to put too much information on here, but she struggles at times to go #2 in the potty and even prays about that!  Sorry, for you men out there (DAD) that might be reading this!  She has oodles of self-control (more than I ever will) and she is not proud, she loves herself, but she loves everyone just the same!

All this to say, Hannah has taught me to be more like Jesus.  Once again, don’t get me wrong, I have a LONG way to go to even catch up with my daughter, but I am learning!  Hannah is just a daily reminder of what my goal should be.  None of us are perfect, not even sweet little Hannah, but she makes me strive to be better, strive to be more like Jesus and be a light for Him.  I fail daily and Hannah does too, but she is my inspiration to get up, dust myself off, ask forgiveness and try again!  I stand in awe of the Lord and how He does think!  He knew that I needed to change and He knew just the right little girl to make it happen!

Thank you Lord for my little miracle, the little girl that taught me more about you!

About Hannah

Being that we are in a period of WAITING, I thought I would share a little bit about Hannah today.  So many people know her, but few REALLY know her.  Hannah has spent 24/7 with me, except for the 4 hours a day last year she went to school.  I have had the honor of dedicating the last almost 7 years to just being her mom.  Many days of never leaving the house….MOST days of never leaving the house.  People have asked me how do I not go stir-crazy and that is simple…..JESUS!  I have NEVER once gotten “cabin-fever” or gone “stir-crazy”.  The Lord has seen fit to make me content and I am so thankful for that.  I can honestly say that I could do this the rest of my life if it kept my little girl healthy, safe and well.  I am blessed to have a husband who wants me at home.  Money and materialistic things have never been his number 1 goal.  He works hard and provides for us.  We have made alot of sacrifices, but God has been faithful to meet all of our needs and even some of our wants.  We learned to live on one income, with no debt, and I am so grateful for that because I get to spend so much quality time with Hannah and I have never had to leave her side when she is sick or in the hospital.  SO GRATEFUL and I do not take it for granted!

Now, onto Hannah…….

She is happy ALL the time.  Even if she is sick, she is happy!  She doesn’t like it when others aren’t happy either.  She will quickly point it out and say…”happy, happy, please!”  Life with Hannah is very routine and structured.  She knows what time of day it is and what happens next.  She has never once complained when it was time to clean up her toys, get a bath and go to bed!  She is a wonderful all night sleeper…..12 hours plus each night!  What a blessing!

Hannah’s Favorite things: All things Elmo, Dora the Explorer, Books, books and more books, Learning (she loves to write her letters and do math problems)….didn’t get this from me!  HA!  She loves MUSIC!  She doesn’t care if it is Country, Christian or Rock, she loves it all!  She does have a few favorites that she plays alot.  She loves Carrie Underwood (got that from her daddy), Toby Keith, Martina McBride, Casting Crowns, Laura Story, Steven Curtis Chapman, Charles Billingsley (got that from her mama), Port Chuck (got this from her mama too) and The Commodores (don’t ask).  She loves Chick-fil-a’s soup, nuggets, french fries and ice cream….she could seriously live at Chick-fil-a and be content!  She isn’t much into sweets except for cookies and ice cream.  She loves any and all vegetables and is pretty much a vegetarian other than chicken.  Haven’t found a vegetable yet she won’t eat!  She loves her iPad and can do anything on it.  She had an iPad (courtesy of a dear friend) before I had an iPhone and she taught me how to use my iPhone.  She still talks alot using sign language.  I taught her signing at 5 months old and she knows about 150 words and also songs in sign language.  I stopped teaching her because we didn’t want it to hinder her from speaking.  She talks alot verbally but will still use the signs with the words most of the time and I love that….she is bi-lingual!  HA!  The signs were wonderful especially for the first 4 years of her life when she didn’t communicate verbally because she could tell us anything she needed to with her hands….cut down on the frustration!  Now, she talks non-stop…..not in sentences, but 2-3 words and gets her point across very well!  She loves school, her teachers, the staff and her sweet friends.  She was the only girl in class this year with 5 boys and she didn’t let that stop her, instead of being a princess, she is just one of the guys and trust me, she can hold her own!  Dennis said that she got that from me.  She is complete JOY…..trust me, she has an attitude at times, and does get in trouble…..we believe in consequences even for a child with special needs.  We have never treated her “different”, we treat her just like we would a typically-developed child because we don’t want her spoiled, we want her to be well-behaved!  But, I will say, even after she has been disciplined, she immediately says she is sorry, wants a hug and then tells us to pray!  I didn’t know a child could pray so much.  She has certain people that she prays for everyday and sometimes out of the blue several times a day.  Baby Norah, a sweet baby at our church who was born with Spina-Bifida and has been in the hospital since she was born 3 months ago is at the top of that list.  About 5-6 times a day, Hannah will get on her knees, fold her hands, bow her head and pray for Baby Norah, her friend….melts my heart.  Hannah loves to read the Bible and she refuses to leave the breakfast table until you have read her devotion to her.  She has memorized many Bible verses.  I have written them out and hung them on her bathroom mirror.  She reads them to me everyday, yes, she READS, and throughout the day she will just start quoting them.  You have to really listen to get all the words…..but she has them down.  Makes my heart happy!  The first one she learned was “Children obey your parents in the Lord, for this is right”…..sometimes when she is misbehaving, I will ask her what the Bible says and she will quote that to me.  Her bedtime routine is really special and if Dennis is home, she wants him to do it with her.  She gets to pick a book, go potty, brush her teeth and read a book and pray.  She usually falls asleep with her hands folded in prayer.  What a way to fall asleep….thanking Jesus for our blessings!

I could write so much more, but I am sure that I lost a few readers because this is longer than a post, it is a mini-novel.  I will do another post next on the things I have learned from Hannah…..that might be even longer than this one!  For those of you who read this to the end…..you are real troopers!  HA!  Hannah is my favorite subject to talk about as I am sure most mom’s feel about their children!  Us Special-needs-moms are the same, thankful and blessed!

 

Waiting…..

June 7th seems like it happened months ago and yet it was less than 3 weeks ago.  We are in a “waiting game” right now.  As my husband says….”let’s hurry up and wait.”

We are waiting for several things.  First, we are waiting to talk to Hannah’s surgeon in Birmingham, but he is waiting to get and read all her last tests and reports.  We are waiting for insurance, to see if they are even going to approve us going to Birmingham for Hannah’s heart cath and surgery.  If insurance denies us, then we will be waiting for Plan B, which is another children’s hospital and new surgeon to see if they will take Hannah’s case and if insurance will approve that.  If that fails, then onto Plan C and so on.  Needless to say, this is where the anxiety kicks in.  The not-knowing is the worst!  We know Hannah has to have surgery, but the when, where and who is what we don’t know at this time and it is quite frustrating.

This is one of those times where we are clinging to God’s promises.  I was having my devotion yesterday and the Lord showed me Isaiah 40:28-31:

28Hast thou not known? hast thou not heard, that the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary? there is no searching of his understanding.

29He giveth power to the faint; and to them that have no might he increaseth strength.

30Even the youths shall faint and be weary, and the young men shall utterly fall:

31But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

I really needed this yesterday.  I was having a bad day and the thought that even though Dennis and I get weary and impatient, the Lord never grows weary and right now He is telling us that we have to wait, but during this time He is preparing us and in His time, will give us the strength that we need to walk this journey with Hannah.

This is not a journey either one of us wanted to take again, nothing is worse than watching your precious little girl suffer, in pain and not able to understand what is happening.  All she comprehends right now is that her heart has several boo-boos and that we are going to go to the hospital and a sweet doctor is going to fix her boo-boos.  Everyday she touches her chest and says “heart, boo-boos, go to doctor and boo-boos all done, mama”.  Breaks my heart!

I am preparing the only way I know how right now.  I am praying, reading God’s word and trusting.  Trusting Him alone, with everything I have and everything I am.  We have done this before, but it truly doesn’t get any easier!  My heart is breaking, but I know God has a reason and a purpose for Hannah to go through this again.  I have to believe what Isaiah 55:6-12 says: 

6Seek ye the LORD while he may be found, call ye upon him while he is near:

7Let the wicked forsake his way, and the unrighteous man his thoughts: and let him return unto the LORD, and he will have mercy upon him; and to our God, for he will abundantly pardon.

8For my thoughts are not your thoughts, neither are your ways my ways, saith the LORD.

9For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.

10For as the rain cometh down, and the snow from heaven, and returneth not thither, but watereth the earth, and maketh it bring forth and bud, that it may give seed to the sower, and bread to the eater:

11So shall my word be that goeth forth out of my mouth: it shall not return unto me void, but it shall accomplish that which I please, and it shall prosper in the thing whereto I sent it.

12For ye shall go out with joy, and be led forth with peace: the mountains and the hills shall break forth before you into singing, and all the trees of the field shall clap their hands. 

God’ ways and thoughts are higher than mine….in Him will I put my trust!  God has a BIGGER plan for Hannah, we don’t know what that is, but in God’s way, in His timing all of this that we are going through will be revealed and I know it will be for His glory and honor!  What an awesome thought that is!

Devastating News

June 7th started out like any other day.  My alarm clock (aka Hannah) woke me up at 5:45am, have to love an early riser!  HA!  Coffee in my hand and milk in hers we sat down to watch the morning news with Dennis.  Not too long after we sat down Dennis and I both noticed that Hannah wasn’t quite herself.  She wasn’t near as talkative and she kept laying her head on the arm of the sofa.  It was the last day of school for the year and we were so excited about the end of the year “Graduation Event” for the whole school and the parents that night.  I immediately thought, I really hope Hannah isn’t getting sick as she was receiving an award that night and we wanted to see our little girl walk across that stage and receive her award for all her hard work.  I also didn’t want her to miss her last day of school to tell her friends goodbye for the summer.

I made her breakfast, Dennis left for work and Hannah sat at the table, but kept laying her head back on the chair.  I felt her head, and she didn’t feel warm and I thought there is no way she can be tired…..she sleeps 12+ hours straight every night.  I walked back in the kitchen and something prompted me to go back to the Dining Room.  As soon as I did, I took one look at Hannah and I knew what was fixing to happen…..she had another seizure.  We have had seizures for the last 3-4 years, but after 2 EEG’s and many visits to the Neurologist, a reason for the seizures just hasn’t been found and they don’t happen often.  I have experienced enough with her though, that you just kind-of know it is coming.

I immediately grabbed her before she fell out of the chair and held her in my arms as her eyes rolled behind her head and she convulsed.  Fortunately, the seizure was a short one, lasting 30-40 seconds.  When she came to, she was so scared, crying and lethargic right after.  Reality hit me at that moment and I realized she would be missing her last day of school and perhaps the Graduation Ceremony that night too.

As I held her, I texted her sweet doctor, Dr. Kim.  Let me just say how blessed we have been with Hannah’s doctors!  Her pediatrician, cardiologist, cardio-thoracic surgeon, endocrinologist, ENT, neurologist, neurosurgeon, optometrist, orthopedic and even dentist are phenomenal.  I thank the Lord for each of them daily!  Dr. Kim immediately called me and asked what happened.  She thought it best for me to bring her in.  So, instead of getting ready for school, we headed to the doctor!

We love Dr. Kim and Hannah tells her everything to do as if Dr. Kim doesn’t know what to do next!  HA!   It seriously won’t surprise me one day if Hannah is a doctor!  Dr. Kim thought it was best, since this was her 4th seizure in less than a year that we contact Neurology and also Dr. Marvin, Hannah’s cardiologist, to see if we could get in to see them both.  We were supposed to see Dr. Marvin on June 29th anyway, so it would just be a few weeks ahead.

I know, for a fact, that the Lord orchestrated this all!  I know we had that seizure for a reason and I know that the Lord gave Dr. Kim the wisdom and insight to have us go on and see Dr. Marvin early.  When I called Dr. Marvin’s office, he happened to have an opening at 9:15 the next morning, which is unheard of!

The next morning by 9:45am, we had already had an ECHO and an EKG and were just waiting to talk to Dr. Marvin.  When he came in, he asked what happened the day before and I told him and then the words he spoke hit us hard!  It was the news we had been dreading for 2 1/2 years, but yet, news that  I was expecting to hear.

Hannah’s heart was significantly worse than it was just 6 months earlier.  Then he looked at us and said that he really felt that the time had come to have her 3rd open-heart surgery!  This was so not the summer of fun that I had planned!  He would discuss her case the following week with his colleagues and the surgeons here in Jacksonville and would also send all her tests to Dr. Dabal, Hannah’s surgeon, who now lives and works in Birmingham.  We told Dr. Marvin that we wanted Dr. Dabal to do this surgery if at all possible, to which he agreed.

The waiting begins……..

Nearly four years of life in a nutshell

After Hannah’s second surgery, other than a suppressed immune system, she did awesome!  She stayed sick alot and couldn’t be around a germ without catching it, so we stayed in all the time!  I would even wait until my husband got home from work to do my grocery shopping and errands.  We couldn’t take her to church, so on Sunday’s, my husband would get up and go and Hannah and I would stay home.  It was a rough time for me, but the Lord gave me this precious little girl and I knew that I had to do what was best for her.  It didn’t matter at all to me what I wanted, it was all about what she needed and God’s grace was sufficient!

Because of her low immune system, at the age of 3 instead of going to school, we were approved for the hospital/homebound program and so a school teacher, Occupational Therapist, Physical Therapist and Speech Therapist came to us at home weekly!  WOW, what an awesome experience.  Hannah took off with learning and getting stronger!  She was potty-trained at the age of 3, which was a huge accomplishment, especially for me!  HA!  The thought of never changing a diaper again was music to my ears!  She learned so much and we were fortunate enough to have the same teacher and therapists for 3 years!  They became like family and some of my best friends since they were really the only adults, besides my husband, that I saw on a regular basis.

We noticed that Hannah seemed to be tolerating germs better and not getting sick as often which was wonderful and we knew that her immune system was probably kicking in, which was an answer to prayer.  She was able to start school at the age of 6.  We put her in a small private school for children with special needs!  WOW, I could write several blog posts on this amazing experience and maybe in the future I will!

When she was 4 , we went to our usual 6 month check-up with the Cardiologist at which time he told us, surgery #3 was necessary.  We about fell out of our chairs.  We thought she was done with heart surgery.  Our sweet cardiologist thought the surgery would have to happen sooner than later, but he gave us 6 more months and said we would see how it was then.  We began praying at that point that God would heal her heart, but if He chose not to do that, we prayed He would give us 6 more months!

Well, for 2 1/2 years, the Lord has continued to give us 6 more months…..well, that all changed June 7, 2012……

Where to begin…..

Well, I will say, trying to begin a blog 6 1/2 years later than I should have seems overwhelming right now especially with what we are facing in the next few weeks.  So, with that, I will just give a quick glimpse into our life the past 7 years!

We found out at week 17 of our pregnancy that our sweet baby was a girl and that she had “markers” for a chromosome abnormality.  Those markers consisted of 4 heart defects, thickening of the neck, fluid on the brain/spine and her legs were not the same length.  We were told by the high-risk doctor that our “fetus” (word he used) would have no chance of surviving birth and we had no other option but to abort!  I told him abortion was not an option for us, where he replied, “you don’t know what you are facing” to which my husband responded, tears streaming down his cheeks, “YOU DON’T KNOW MY GOD”.

Fast-forward 20 weeks later and Hannah Brooke made her entrance into this world with curly black hair, beautiful almond-shaped blue eyes, the sweetest face and a smile to melt your heart!  It was apparent to us that she did have a chromosome abnormality, which was Trisomy 21, otherwise known as Down Syndrome.  She did have the 4 heart defects, but none of the other “markers” were present!  God is so good!

We had a rough 4 months, mainly with eating issues….we had a G-tube put in so that she could grow, gain weight and be ready for her first open-heart surgery.  Her heart was so bad that she would fall asleep before she even finished 2ml of formula.  So, the G-tube allowed her that time to rest, grow and get stronger.

At nearly 4 months of age, the day before Thanksgiving 2005, our sweet Hannah underwent her first open-heart surgery!  There is just nothing to prepare you for that!  Without the Lord, I truly don’t know how we would have gotten through that surgery and the 4 weeks that followed!  We almost lost her twice and only by the grace of God did she survive!  BUT, she did and progressed beautifully until May 2007 when we were told she was in the less than 1% with her heart defect that a membrane had grown between her aortic valve and was causing an obstruction and had to be removed.  Our hearts sank!

On July 10, 2007, 2 weeks before she turned 2 years old, Hannah underwent her 2nd open heart surgery.  We prepared the best we could, knowing what we had experienced with her the first time, but she surprised us this time leaving the hospital just 3 short days later ready to take on the world! I still get goosebumps and teary-eyed every time I think of the miracles that God has done in our sweet girl!