Gone But Not Forgotten…..A Letter To Angie

My Dearest Angie,

Today is your 42nd birthday.  I know you are celebrating bigger and better than we could ever imagine here on earth!  You are celebrating with Jesus…..how great is that for you?  I have to say if I could invite anyone to my birthday, it would be Him and you are celebrating with Him today and everyday.  As happy as I am for you; I am so sad for me.  I wish I could celebrate just one more birthday with you; but I know that isn’t possible until we meet again.

Not a day goes by that I don’t think about you.  I see your picture everyday as I have several of them around my house.  I walk by, smile and always say hi.  Some days, I get teary-eyed if I stand and look at them too long.  Your life….the impact that you made on so many people; but especially me stays with me like you are still here.

Your faith in the Lord; that faith and hope that you clung to until you took your last breath and met our Savior face-to-face is absolutely your greatest legacy not only to your children, but your family, friends and even those that never had the privilege of meeting you, but have heard your story.  A story that everyone needs to hear.  A story of the bravest woman I have ever known that fought a battle that NO ONE should ever have to fight.  A story of how cancer grew in your body three different times and each time you fought it with grace, perseverance, hope, faith, trust and believing each time you would be healed!  You never lost sight of the Lord.  You never let cancer, the “evil one” (aka the devil) or the awful treatments you went through get the best of you.  You continued to work until the week before the Lord called you home.  You were out Christmas shopping for your sweet children just days before your last breath here on earth was taken.  You fought until the bitter end a battle that most people (me included) would have given up on and quit; but you never did!

You and I shared many moments during your 4 year ordeal with cancer.  We shared many conversations; some of which I would never repeat to anyone because I hold those moments so precious and private between you and I.  But, there was one thing that rang true through your whole battle and that was the way you loved the Lord.  You NEVER once blamed Him for your struggles.  You NEVER once thought why you and not someone else.  You NEVER let it shake you or your faith.  You held fast and true with long-suffering, gentleness, goodness and faith.

As I remember you today, on this your special day it gives me renewed strength.  A strength that I am drawing from you.  A strength that you taught me, not because you “talked” it, but because you actually walked it and lived it!  I watched you struggle and suffer; yet never complain.  I watched you fight yet you did it with a smile on your face.  I watched you accept the unacceptable and you did it with humility, love, grace and peace.  I watched you, physically weak and tired; but yet so very strong too.  You, my friend are the reason I keep pressing on.  I have wanted so many times to give up this year with all we have been through with Hannah but then I think of you and I know YOU never once gave up and I won’t either!  You might not be with us physically, but you are with us in every other sense!  You are here!  Your legacy lives on…..you might be gone but you are never forgotten.

I have the great honor of taking your sweet mom to dinner tonight along with Misti and Whitney. We did this last year on your birthday too and want to make sure we do it every year.  It is our way of celebrating you!  What an honor for the 3 of us to be able to spend your special day with your sweet mom and show her just how loved she is.  I know her heart aches every.single.day.  It is an ache I cannot imagine and one I never want to experience.  So, I pray that tonight your sweet mom feels loved, honored and respected just the way that you would want her to feel; the way you always made her feel.

I love you, I miss you and I cannot wait to be reunited with you in Heaven!  I pray our mansions are right next door to each other; although if mansions are given out by our faith, grace and good deeds here on earth…..your mansion will be high on a mountain and mine will be in the valley next door to my dad!  HA!

I love you my sweet friend!  Happy Birthday!

Throwback to the early 90's!  Friends forever!

Throwback to the early 90’s! Friends forever!

Left to right: me, Angie, Whitney and Misti....love you girls!

Left to right:
me, Angie, Whitney and Misti….love you girls!

Until next time……….

Today We Celebrate

Nine years ago my life changed forever!  A miracle happened when a little girl was born who the doctors told us would never be.  She was supposed to die before birth or at least shortly thereafter; but God had a different plan and He didn’t fill the doctors in on it!

July 27, 2005 at exactly 6:29 am a 6 pound 0.1 ounce little girl with a head full of black hair and beautiful blue almond-shaped eyes entered this world with the sweetest little cry I had ever heard. It was a sound we were told we wouldn’t hear and the moment I heard her I knew she was a fighter and was here to stay.  We named her Hannah Brooke.  Hannah because in all reality it was the only name Dennis and I could agree on and Brooke after my cousin whom I have always adored.

Have the past 9 years been easy…..NO WAY!  They have probably been some of the most difficult years in my entire life!  Have the past 9 years been worth it……ABSOLUTELY!  I have said many times that Hannah was sent here for me…..to change me and change me she did and continues to do. It is through the strength that she has that I am so strong.  She is resilient and she is a fighter; she didn’t get that from me, I got it from her.  I have watched her endure sickness after sickness, surgery after surgery, diagnosis after diagnosis.  I have watched her smile and laugh through the pain and I have watched her cry and scream through it as well.  I have watched her fight when most, especially adults would have given up and I have watched her win when most would fail.

This past year has been our most difficult, without a doubt!  I have seen my once happy, energetic, loving and sweet little girl get snatched away because of a nasty, horrible nightmare in the form of an autoimmune disorder that has attacked her brain.  I have watched the little girl who once was, disappear and become someone we don’t recognize.  I have, at times, seen glimpses of the old Hannah and the moment that I get my hopes up that she is back; she is gone again.  I have cried, screamed, cussed, and yelled (yes, sometimes at God) throughout this past year, but to no avail.

The one thing I have done though is the one thing that I learned from Hannah and that was to fight and fight I have and will continue to until I take my last breath.  I have fought for medical care, doctor’s understanding, education, socialization, treatment and a cure.  I will fight because it is all I know now; all thanks to my sweet girl who was fighting the moment she was born and continues to.

She is our joy, our love, our life.  Mine and Dennis’ world revolves around her and it forever will. I have no greater calling than to be Hannah’s mom.  Yes, I would love to have been a doctor saving lives or a police officer fighting crime.  A musician making music or an actor staring on the big screen.  A writer with a best seller or a politician making positive changes in our country. A CEO of a huge corporation or a missionary in another country.  But, none of those were my calling….none of them were God’s plan.  I am Hannah’s mom and that is enough!  I am a mom to the most incredible little girl I have ever known, (yes I know I am biased; just like you would be if you were talking about your child).  The truth is though, she is incredible!  She is my life and I know she is my purpose!

Today, Hannah turns nine years old.  Another year behind us that we were told we would never have and a slew of miracles attached to those nine years!  I am blessed…..blessed to be her mom and blessed to still be mothering her!  I don’t take one single day of her life for granted as I know each day is a gift that I am so very thankful for.

Today, even in our difficulties, we celebrate Hannah!  Today we will eat cake, open presents and thank God for another year! Even if this coming year is just as difficult as the last; we still celebrate and we will move forward.  We are stronger, have more faith and we always cling to the hope we have in Christ!

Happy Birthday to our sweet Hannah!  Mommy and Daddy love you to the moon and back!  You are our life, our love and our heart!

5 weeks after Hannah was born and we had just gotten out of the hospital!  She was SO tiny.

5 weeks after Hannah was born and we had just gotten out of the hospital! She was SO tiny.

Smiling looking at daddy of course!

Smiling looking at daddy of course!

Pure LOVE!

Pure LOVE!

Fairhope, Alabama.....Hannah was about 7 months old here.  I love the way she is looking at me in this picture!

Fairhope, Alabama…..Hannah was about 7 months old here. I love the way she is looking at me in this picture!

Happy girl!

Happy girl!

Happy Birthday sweet girl!  We love you!

Happy Birthday sweet girl! We love you!

Until next time………

Handwriting On The Wall

Last night after Dennis went to bed I was sitting in the den trying to watch mindless TV, but I couldn’t concentrate on it at all.  Just the fact that I had it on TLC watching Here Comes Honey Boo Boo should tell you the state of mind I was in.  It is absolutely the most absurd show I have ever seen but even it couldn’t keep me entertained.  On a side note here, I would love to see Honey Boo Boo meet the Kardashians; that might prove to be very entertaining.  I digress…….

We have had an extremely difficult time with Hannah since we returned home from our trip to St. Pete. She has been “flaring” which means for some reason all of her symptoms are worse than usual and on top of it she hasn’t been sleeping; which is all part of PANDAS.  For awhile, the symptoms are there, but manageable and then out of nowhere, for no apparent reason the child will flare and the symptoms are horrendous!  That is what we have been dealing with the past week and a half. Hannah has been getting up 8+ times each night between the hours of midnight until 5am. Needless to say, when she doesn’t sleep, I don’t either.  Of course when a child doesn’t sleep, runs fevers all day and just doesn’t feel good…..well, they don’t act good either!  It has been quite mentally, emotionally and physically exhausting for me.

Last night, I had some difficulties with Hannah right before bedtime.  As she fell asleep I prayed over her and found myself SO ANGRY….yes, even angry at God.  I was quite harsh with Him asking why Down Syndrome and a bad heart wasn’t enough that she now has to have a seizure disorder, a Central Nervous System issue with temperature regulation and PANDAS.  I asked Him why and I told Him that I know that He could reach down, put His hand on her and heal her completely.  I don’t understand why He doesn’t.  It isn’t from lack of my begging, pleading and bargaining with Him.  Yes, I have even tried to bargain with God…..sue me!  Of course, in the middle of my “pity-party, angry rant” to Him, He gently brought to mind all the other children that I have heard about lately that are in battles too.  Some, fighting for their life.  Some that have been living with PANDAS for years and some going through horrible cancer treatments just to live.  My heart broke.  Not only for the children that I have heard about but for their parents as well.  Having a sick child is the worse thing ever.  As a parent, you want to take it…..you wish it were you instead of them.  You would die for your child….you would do anything to make them better, but you cannot!  It is heartbreaking to watch your child suffer and as strong of faith as you might have; you are only human and there are times that you wonder WHY!  Sickness sucks…..I don’t care what kind of illness it may be; it all just sucks, especially when it happens to children!

As I sat there on the sofa last night I picked up my phone and started scrolling through older pictures.  I had prayed earlier that God would show me a sign that He has a plan and that He is listening.  I actually told Him that I would prefer handwriting on the wall if He could do that for me. I didn’t really expect Him to do it, but then I came across this picture.  It wasn’t so much the picture that I noticed but the “handwriting on the wall” behind Hannah.

Hannah church

“Jesus made sick people well, Luke 7:21”.  I remember when this picture was taken.  It was about 3 years ago at church.  This is one of the few times in Hannah’s life that she was able to go to church for a period of time.  We were sitting in the Preschool area.  She was reading a book and looked so cute so I snapped the picture.  I never noticed the sign behind her until last night.

Is it God speaking to me?  I don’t know…..was this the “handwriting on the wall” that I asked Him for?  Possibly, I don’t know if He truly works that way, but to me it is more than coincidence that I had just asked Him for it not 2 hours earlier.

Jesus made sick people well……yes, He did.  I also know that so many He hasn’t healed on earth; my friend Angie is just one example.  I don’t understand……I cannot wrap my head around good people and children suffering and dying.  I can’t understand why some children NEVER get sick and why others NEVER stay well.  I.just.don’t.understand.  I never will!  I know that there is a reason and I know that reason may not be revealed until eternity.  There are so many sick right now, so many fighting for their life and so many fighting to do more than just exist!  My heart is so burdened and heavy not only for my own little girl but all the others that I have heard about over the past few months.

I want to be intentional to pray for them, pray for their families and ask God for a miracle on their behalf as well.  There is nothing worse for a parent than watching your child suffer.  I know…..I have watched Hannah struggle on and off for almost 9 years now; of course the last year being our absolute worst!  I can’t do anything for others except pray and I am doing that…..I am claiming this “sign” as God’s handwriting on the wall to me…..Jesus made sick people well…..I am claiming this for Hannah, Stephen, Ashlyn and Ruthie; among others!  Please join me!

Until next time……….

 

 

Far Flutterby

I am not much of a reader….I love to read but I can never find the time and when I do unless the book keeps my attention really well; my mind will wander and I will end up reading the same sentence 12 times.  There are two authors that keep my attention because their books read so well, it is like a movie is playing in your head.  You can see the characters and you can visualize the story-line and it captivates you.  Karen Kingsbury and Francine Rivers are the two authors that do this for me.

The thing I love about Karen Kingsbury is she has quite a few children’s books that she has written and Hannah has them all.  They are Hannah’s favorite books.  The funny thing is, I get something out of her children’s books as well.  If you have kids; I highly recommend her books. One of my favorites is Far Flutterby.

Hannah wanted to read it today, so who am I to say no.  This book really speaks to me every time I read it but especially today, since I have been feeling so down.  It is the story of Cody the Caterpillar.  He is bored and wants to know that there is more to his life than crawling, eating, sitting and sleeping.  He gets visited by Franny McFly and Beulah Lee Bird who encourage him to have faith and hope; to be patient, hold on and wait for the Lord, trusting that He has a plan.  He spends weeks in his “sticky cocoon,” until he remembers the words of Franny and Beulah…..”God’s plans are good, so have faith and you’ll see.”  He decided not to give up and he struggled and struggled to break free from that sticky cocoon.  As I am sure you can guess, he finally broke free of that cocoon and he had turned into a butterfly with beautiful wings!  The last page in the book makes me cry each time.  I hope Karen Kingsbury doesn’t mind (not like she is going to read this blog anyway), but this is what it says:

Cody called to his friends, as he dipped and he soared, “Have faith through the hard times, believing in more!  For there in the journey and stuck in the sting, the struggle, the struggle…..is what gives you wings!”

How many of us struggle and feel the sting?  The answer is we ALL do.  At some point in our lives we will all struggle with something.  Death, sickness, job loss, divorce, financial hardships, heartbreak, disappointments, broken friendships and family relationships…..one or more of these things will affect us at some point in our life.  What this book teaches me is that no matter how much we are struggling, no matter how much we want MORE in life, no matter what you are going through; God has a plan.  We have to hold on to that hope and faith believing that at the end of the struggle we will get our wings!  We have to have struggles in life.  They build our character, they give us strength we didn’t know we had and they help us, help others.  We don’t go through difficulties for no reason; there is always a reason.  Sometimes we never know why but I know with everything I am there is a reason for it all.  No one wants struggles….wouldn’t it be nice to never have any worries, concerns or difficulties?  I would sign up for that right this very minute if it was that easy, but it isn’t.  What we have to know though is that our struggles are what makes us who we are.  I can tell you right now that I am stronger today than I was 9 years ago. My faith is stronger, my belief system, although changed, is better and my perception on life is different (in a better way).  I am not the person I was almost 13 years ago when I married Dennis or almost 9 years ago when I gave birth to Hannah.  It is through the struggles that I have become the person I am today.  Now, am I saying that person is happy all the time?  No!  Am I perfect?  No where near it!  Do I fail constantly?  Absolutely!  But, I have learned many lessons and through each struggle gotten stronger each time.

I guess that is all I am saying in this very long and most likely very boring blog post…..our struggles, our difficulties, our sorrows, worries and challenges; we have them for a reason. Learn from them, let your faith grow through them, rely on God through them and hold on….DON’T GIVE UP…..better days are coming.

If you had been in my home last night as I cried to my husband and told him how weary I was and how I don’t want this life for Hannah or us, then you would know that I am preaching to myself today!

far flutterby 1

 

Until next time………

Overwhelmed and My Aching Heart

We are back from our whirlwind trip to St. Petersburg…..I know I kept saying Tampa but in all actuality we were in St. Pete, but I suppose that really doesn’t matter in the whole scheme of things.

We walked out of the appointment with the Specialist yesterday and all of a sudden, out of nowhere I had the most awful feeling of being overwhelmed.  I felt anger, sadness, frustration, depression, anxiety, aching in my heart and an overall sense of grief that I have never felt before.  At the same time there was a feeling of relief……relief in the sense that we aren’t playing the “guessing game” anymore.  We got in the truck and I lost it…..completely.  I sobbed.  I felt such a loss at that moment that I cannot even put it into words.  A loss for the little girl that we once had that I am not sure we will ever get back.  A loss for the life that I wanted for her and now, especially for the unforeseeable future, a life just like the one we have been living these past 10 months.  The only thing that has changed is that we know we aren’t crazy and that we have a name to put with this dreadful, horrible condition that Hannah has.  We have a name, but that is all.  We have the specialist recommendations for our doctor here at home to follow and we have a doctor now in St. Petersburg that we will see every few months.  We are also being referred to a Neurologist that our Specialist works with there in St. Petersburg as well.  This Neurologist is critical for Hannah.  We have to heal Hannah’s brain……he will hopefully be the one to help with that.

If you are on Facebook you have probably seen me post a few things about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep).  It is an autoimmune disorder that is caused by strep.  Without going all “medical” on you; the bottom line is the strep infection goes to the brain, causing inflammation in the  Basal Ganglia part of the brain.  This is the part of the brain that controls the behavior and personality.  When the inflammation occurs it can cause behavioral/personality changes, anxiety, major OCD and tics (vocal and motor).  This is what Hannah has in conjunction with a thermoregulation disorder and seizure disorder as well. Her stomach is completely out of whack and we have seen some regression in her as well.  The Specialist in St. Petersburg feels that it is ALL related!  The last 10 months each infection and symptom just built on the other and in conjunction with the lower immune system that Hannah has, this was inevitable.

The question now is how do we fix it and the answer is we don’t know!  Hannah will be having some more testing done; blood work and some Neurological testing, which will be taking place in St. Petersburg with the new Neurologist.  Hannah will be on antibiotics for a very long period of time as right now, that is the only thing that really helps to control some of her symptoms, along with lots of Motrin to help with the fevers and inflammation.

I do believe with all my heart that we needed to go to this Specialist and I am so glad that we did. I do feel that we are finally taking a step forward, instead of backwards but I would be lying if I told you that I was okay with all of this.  My heart is physically aching…..this is not the life anyone wants for their child.  I have had the opportunity to meet and chat over the last few months with some wonderful people who have children that have been dealing with PANDAS for years and it is so difficult for them.  They long to have the child back that they had prior to PANDAS.  They long for normalcy, socialization and a life for not only their children but themselves.  This is a disease that not a lot of people have heard of and unfortunately a lot of doctors don’t really acknowledge it as a real problem.  This is a REAL disorder and it is a nightmare!  I am not exaggerating…..I wouldn’t wish this on anyone!

So, there you have it in a nutshell.  We have known for sometime this was what we were dealing with but yesterday pretty much confirmed it for us and now we have the long, difficult process of more testing, no life outside of our home and more doctor visits.  This is our new normal that may or may not ever change.  Yes, I am so very sad……for Hannah and for Dennis and me.  But, if I know anything it is this……God never promised us happiness or an easy and comfortable life. He did promise that He would never leave us nor forsake us.  He gave us Hannah and she was conceived out of pure love.  The love that Dennis and I had for each other and even though there are days (like today) that I question what God was thinking giving me a child that is so sick I have to always know that He did choose us for Hannah.  I know beyond a shadow of a doubt that this was the life God chose for me and I will live it and do all I have to do for Hannah and give all the glory to God in the good and bad times.  I don’t understand, but in all actuality…..God doesn’t really intend for us to understand; He just calls us to do and do it for Him.  So, this life, as difficult as it is…..we will do it and we will do it with God’s grace, mercy and the strength and wisdom that can only come from Him.

On a side note…..if anyone is going to have direct contact with Hannah, even family members, you will HAVE to have a strep test done.  If you are a carrier of strep you will have to be on antibiotics until the strep no longer shows up in your system before any contact with Hannah occurs.  THIS IS NON-NEGOTITABLE! Like I said…..this is going to be a very lonely life.  Dennis and I will be having strep tests done as well. We will do anything we have to do for Hannah; this is not against anyone…..we are just doing what we have to do to protect our little girl from getting any sicker.

I will leave this on a happy note…..we had the wonderful opportunity on our way to St. Petersburg to see Henny.  Her sweet Puppy Raisers invited us to their home for lunch.  We ended up staying 4 hours!  We were so very happy to see our sweet Henny and I think she was happy to see us too.  Hannah was in “doggie Heaven” because Marty and Cathy have 5 dogs including Henny!  What a sweet time it was for us.  Marty and Cathy aren’t just friends, they are family and we feel so blessed to call them that!  They have taken in our sweet Henny for however long it takes for us to be able to get her back and we are indebted to them forever!

Reunited and it feels so good!

Reunited and it feels so good!

Until next time……..

Special Needs Parenting……Lessons I Have Learned

life lessonsa

I have said many times that God gave Hannah to me, FOR ME!  I had some difficult lessons to learn, some growing up to do and I had to learn to stand on my own two feet.  Some of the lessons have been easier than others.  Some of the lessons have been absolutely heartbreaking and some of them I have welcomed.  Here is a short list of the lessons having a special needs child have taught me:

  • Patience…..it truly is a virtue!  I have a lot more now than I used to and I truly believe the only way to learn patience is to have to practice it and practice I have!
  • Saying no!  I used to have so much difficulty saying no to anything; even if I really wanted to, I never did.  Now, saying no is so EASY for me whereas saying yes is the difficult part!
  • Standing up for myself was always an issue.  I was a doormat for everyone.  Since having Hannah, I have had to fight for her on so many occasions that now standing up for myself seems like second nature.  I am no one’s doormat anymore!
  • Not caring about what others think of me.  This used to be huge for me.  Everything that I did was to please others; even when it wasn’t always the right thing.  I cared so much about what others thought of me that I never realized that it isn’t what others think but only about what God thinks.  We are all fearfully and wonderfully made and when I finally accepted me for who God made me to be (flaws and all), I stopped caring if people liked me or not.  I stopped taking what everyone else said as the Gospel truth and was really able to be my own person instead of who everyone thought I should be.  There is such freedom in that.  I formed my own convictions about religion, politics, right and wrong.  I was no longer bound by the man-made rules of others but relied solely on what God thought and what I believed.
  • Finding out who is really there for you and who isn’t.  This has been one of my greatest heartaches and most difficult lessons to learn.  I am not going to go into a lot of detail but all I will say is that I have truly learned who really cares and who doesn’t.  People I have always been there for and then when I truly needed someone; they were nowhere to be found and still aren’t.  This has been one of the greatest heart-breaks for me but a lesson that needed to be learned.
  • How to be alone.  This too, has been a difficult lesson to learn and accept.  The life of a parent with a special needs child and especially one with a lot of medical issues is extremely lonely.  For me, I am stuck in my house 24/7 with Hannah.  Other than going outside to her swing set or the pool we don’t go anywhere.  There is no running errands, school, play-dates, going out to eat or to the zoo or park for us.  There is no social interaction for either of us for the most part and it is truly a lonely existence.  I go all day with no adult conversation (except for talking to myself; which is rather nice because “we” never disagree with each other)…..ha!  When Dennis gets home is when I run any errands that I need to and I try to do them all in one night so I don’t have to leave too often.   It is a lonely life and one that I have had a lot of difficulty accepting; but have had no choice.
  • No one really understands.  I think some people really want to understand and some actually try; but there is no “getting it” unless you have walked it.  I could sit and explain a day in my life to anyone but only those that have lived it can really grasp it.  I don’t fault or blame those that don’t “get it,” heck, I wish I was one of those people at times.  But, this too just adds to the loneliness of it all.
  • The heartache never goes away.  I have learned to deal with daily heartbreak.  I have to be honest here….as much joy as it brings me to see all the things other kids get to do at Hannah’s age; it also crushes my heart and spirit!  I have nothing but happiness for anyone that gets to do fun and exciting things with their kids.  Kids that are self-sufficient and independent; that at nearly 9 years old who are bathing themselves, going to the potty by themselves, carrying on full-blown conversations that actually make sense….you get the picture.  As great as that is for everyone out there who is able to  experience that; it is heartbreaking for a special needs mom.  I have had to learn, accept and embrace that isn’t my life and never will be.  That is a difficult lesson to learn and even harder to accept.
  • Life is a constant fight.  There is nothing easy about this life.  You are in constant fight mode for your child and yourself.  Fighting for acceptance, education, health and well-being, and the list goes on.
  • Learning selflessness….denying yourself, your needs, your wants and your desires.  This is one of the toughest lessons yet.  This is the one that I needed most of all.  EVERY parent, whether you have a special needs child or not needs to learn this lesson.  For me, it wasn’t about wanting to learn this lesson as much as having NO choice in learning it.  I didn’t realize how selfish I was until Hannah entered my world.  Then, I realized it wasn’t MY world anymore; it was hers!  Her needs, wants, health and desires became mine.  Do I miss my world…..ABSOLUTELY!  I would be lying if I told you that I don’t remember my life (and how easy it was) prior to Hannah.  There are things I greatly miss; especially the freedom.  But, it isn’t about me anymore!  I have this little person that depends 100% on me…..I have to give her 100% of me, my time, my effort, my everything.  That is why, at the end of the day there is really nothing left for me to give.
  • Life is a roller-coaster ride!  This is so true and more than I ever dreamed this last 10 months.  It takes a toll on your emotional, mental, physical and spiritual health!  It is all tried, tested and there are days that I do wonder how I can continue on.  I know that I will; I have no choice but it sure is challenging to say the least.  I think one of the most difficult things is up until 4 months ago, it was SO much easier; even though she was sick; the roller-coaster wasn’t near as bad as the last 4 months.  I will be the first to admit that I have been shaken to my core the last 4 months and I struggle each day with this new journey we are on.
  • Balance…..this is a lesson I haven’t learned yet.  I am not even working on this one because quite frankly I don’t know how to have balance.  It isn’t possible right now.  There is no Tamara!  Do I hate this, yes…..I do; but at this time, especially with Hannah and her illness right now finding balance in my life is not possible.  Maybe one day it will be.  So, you see there are still lessons to be learned, accepted and embraced!  Still things to work out and still hardships to face.

I wrote this all out because I wanted to see it in black and white.  I feel it everyday and I think about it a lot but I wanted it in writing.  I know a lot of my Special Needs moms will agree and there will be some that can’t even relate because they haven’t faced some of the challenges that we have; just like I haven’t faced some of the challenges they have or that those with “typically-developed” children have.  On that note, I will say that some of the things that parents with “typically-developed” children have faced and will face, I won’t have to…..see there is a silver lining in there somewhere!

I want to end on a positive note……yes, this life has challenges.  It is full of highs and lows; ups and downs; happiness and sadness; just like any parent out there.  Mine is just different.  I am dealing with a different child with different issues; mentally, physically and emotionally.  As difficult as most of my days are right now one thing is certain….God created Hannah and she is fearfully and wonderfully made.  He chose me to be her mom (and yes, there are days that I question His judgement there), but I am grateful.  I am grateful that He saw fit to give me this little girl to call mine.  He gave me this miracle and He alone will equip me to be the best mom for her that I can be.  My heart aches, but it also rejoices.  Life isn’t easy especially when learning difficult lessons; but with every lesson learned there is wisdom, strength, grace and mercy added and I need all of those things I can get!

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Until next time……….