Sweet Sixteen

How is it even possible that I am typing this blog post?  Where have the years gone?  How is my baby SIXTEEN YEARS OLD TODAY?  I am reeling at the thought of what today is and the significance it holds for me.

16 years and 4 months ago we were informed that the baby growing inside of me would never be born alive.  I was told that I would have a late-term miscarriage or she would die at birth.  Because we refused to abort her, the doctor who was pushing us to do just that told us “then don’t plan on bringing her home, plan her funeral instead.”  At that moment, in March of 2005 my heart shattered and my prayer became…..”God, please….if you are going to take her please do it before I meet her.”  Yes, I prayed that if she was surely going to die that I would miscarry.  I mean, WHO prays for that?  But, I knew that if I were to lay eyes on her and hold her that I might never recover from her death.  In all honesty, those last 4 months of my pregnancy I grieved horribly.  I cried, I screamed (yes, even at God).  I couldn’t believe that this was happening……

But, you see…..in those 4 months God was preparing Dennis and me for a journey that we didn’t ask for, one we never would have willingly signed up for but NOW….hindsight 20/20…..a journey I wouldn’t have wanted to miss for anything.  This journey has been H.A.R.D and there have been moments that I have wanted to crumble but the JOY and BLESSING this gift from God is to us is a JOY and BLESSING that I can hardly put into words.

Sixteen years ago, this beautiful, TINY (all 6 pounds of her), baby with almond shaped blue eyes, a head full of black hair and an extra chromosome entered this world and our lives have NEVER been the same.  She came in this world fighting and she still is.  She has changed me in ways that only those closest to me really see but she took a very selfish, self-centered woman who never wanted to have children and turned me into a woman who learned to put herself aside and who LOVES her baby girl like I never dreamed possible.  I learned to fight and advocate.  I learned to set boundaries.  I learned to say NO.  I learned compassion for others going through difficult days.  I learned that the things of this world just don’t matter.  She has taught me so much and continues to.  I always say she is the greatest teacher I have ever had.

Hannah is happy.  Hannah is sweet.  Hannah is kind.  Hannah loves people.  She loves ALL people……we have always said that she doesn’t look at age, race, gender, sexual orientation, financial status, political affiliation or even religion.  She just LOVES people.  She will give the same hug to a homeless man that she would to the President of the United States.  Trust me, she has hugged homeless men and women (much to my discouragement, but she didn’t care).  She LOVES Jesus with her whole heart and her favorite thing to do is “Praise Jesus” whether that is in church or upstairs listening to the Gaither Vocal Band in her playroom.  She knows she can praise Him anywhere.  Hannah LOVES her mama!  We went through about a 4-year period of time where she wanted nothing to do with me (I refer to that as PANDAS hell).  She only wanted her daddy.  Those 4 years almost broke me…..BUT GOD!  He healed us and now…..oh wow, she is such a mama’s girl and I eat it up.  She LOVES her daddy too but you know……16 years old and hormones…..she really needs her mama.  Hannah loves her people…..family, friends, neighbors, our pastor and his wife, our church family……too many people to name but she loves so many and she talks about them and prays for them all the time.

The joy she has brought into our lives, the joy she has brought into the lives of others; everything about her is downright special.  Her laughter is contagious.  Her smile is mesmerizing.  Her hugs are the best and her kisses melt me.  She loves hard.  She loves big.  She has so much love to give and she does just that.

Yes, she isn’t “typically developed” and yes, I have struggled some with this birthday thinking of the “what-if’s.”  You know, we would be buying her a car today, she would be driving.  I would have to loosen those apron strings some and start allowing her to spread her wings.  She might have a boyfriend and be getting ready for her Junior year of school.  She would be talking about college and next steps.  She would be going out with friends and probably wouldn’t want much to do with her parents.  But, for us, turning sixteen looks more like dinner at her favorite restaurant (Gianmarco’s), opening presents (some new clothes, flashcards, school workbooks, reading books, educational games), probably a cupcake and the happy birthday song.  Then a Sweet 16 party on Saturday.  There won’t be a new car (although I did tell Dennis he could buy me a fun sports car instead, but I don’t think it’s happening) LOL!  She won’t be driving or going out with friends or having a boyfriend (THANK THE LORD)!  But, she will be surrounded by love, hugs, care and everything she wants and needs.  And….let’s face it, in this evil world we live in I am perfectly content with her being right here with me where I can protect her for the rest of our life!

Hannah Brooke, you are so very loved…..we cannot believe you are 16 years old and I am so thankful God gave you to your daddy and me and I am even more thankful for 16 years that we were told would never happen.  Oh the joy, love and laughter you have brought into our life!  I truly wouldn’t want to do or be anything else in life except your mom!  I am so incredibly blessed to have you my beautiful and perfect little angel!  We love you monkey, so much all of our hearts!

She loves her camo!

THIS is 16!

Until next time……….

Exhausted Grief – The bad and good

It has been FOREVER since I have blogged on a personal level.  The Parents In The Basement blogs are actually more fun than these kind but I need to write.  It is therapy for me.  I can put it all out there and in the words of Elsa…..”let it go.”

For those who follow me on Facebook and Instagram you know that Hannah has been sick for several weeks now.  We have come to find out it is all autoimmune in nature which is good and bad.  The good part is we know the reason; the bad part is there are very few treatments available for autoimmune diseases (which Hannah has more than one) and no cure.  I told Dennis the other day that we have no clue just how stressed out her body is from all that is going on that we can’t see.  It makes me sad; heartbroken actually.

This all started about June 25th when she woke up screaming in the middle of the night.  I thought she had a bad dream but it wasn’t until the next day when I realized she was in pain and it turned out to be in her mouth.  By Monday, the whole left side of her face was swollen and I rushed her to the dentist.  Come to find out she had numerous canker sores on the left side of her mouth.  It was so bad that they ended up getting infected and Hannah wouldn’t eat, wouldn’t let us brush her teeth, could barely open her mouth and she only talked in a whisper.  She got a shot of antibiotics and within 10 days from the start of it, she was back to normal.  Within 3 days, she was waking up screaming again in the middle of the night and the whole process started over; except this time they didn’t get infected (thank you Lord).  Fast forward to 2:30 this morning and she woke up screaming in pain.  She has more mouth sores and this time on the right side of her mouth.  We have known for years she had multiple autoimmune issues but we couldn’t pinpoint what they were exactly.  She has SEVERE psoriasis and eczema, runs low-grade fevers, has a low white blood count, among other things.  She is never very active.  She has extremely low energy and prefers just to sit in the air conditioning and read or play with flashcards.  Finally, after this latest round of bloodwork, we are seeing the inflammatory markers go up (which is one of the things they look for to diagnosis autoimmune diseases).  Because of this, and these dang canker sores in her mouth (she literally has had about 15 total in 3 weeks time); our Rheumatologist and Pediatrician thought it was time to start her on a new medication.  It is a shot that she will receive periodically.  We are praying for no bad side effects and that this will treat her psoriasis, other issues and these canker sores which we know are part of these autoimmune issues.  She got her first shot this morning.  She is miserable today but she is smiling.  I can see the misery in her eyes (and her own exhaustion).  But, she smiles and tells me she “loves me so much all of her heart” and that I am “her best friend”……God love her!

It is heartbreaking to watch your child suffer.  It is so hard to be this exhausted.  This kind of exhaustion from not sleeping and worrying brings on grief.  Last night as I laid there not able to go back to sleep I thought of all the things going wrong (my brain would not stop thinking about the bad), but then I made myself think of the good that goes with that bad.  Here is the list I came up with:

The bad – Hannah is in constant pain

The good – Hannah smiles more than anyone I know even through pain

The bad – All Hannah has ever known in her life is sickness

The good – She has no clue that this isn’t “normal” for everyone

The bad – I don’t function well with no sleep

The good – I still get it done, I do what I have to and I only have God’s grace to thank for that (although I am still not a very nice person on no sleep)

The bad – I am tired of spending hours each week at doctors offices

The good – I am thankful I have a nice SUV to travel downtown in and that I don’t have to work or worry about money and I can take Hannah to all of her appointments.

The bad – The money we spend in doctor and prescription copays and supplements each month is quite possibly what most people make in a week

The good – We have insurance and God has blessed us financially and we don’t have to worry about how to pay those copays and for all the things Hannah needs

The bad – Sometimes I feel so alone in all of this and inadequate

The good – God tells me I am not alone because He is always with me and I am enough; He has equipped me to be what I need to be for Hannah

The bad – I neglect so much of what needs to be done in caring for Hannah

The good – What I am neglecting is not important….she is the most important thing

The bad – Sometimes my grief is overwhelming…..I am especially struggling right now with her turning 16 in less than 2 weeks

The good – We were told she wouldn’t survive birth so to have her with us 16 years later is nothing short of a MIRACLE

The bad – I miss having the nanny/babysitting help I used to have

The good – My mom has really filled in a lot of the gaps for me with Hannah so I can at least run errands and do some of the things I need to do

The bad – Having a child with special needs is not something I would have signed up for

The good – I sure would have missed out on the BIGGEST BLESSING of my life had I missed the privilege and honor of being her mom

The bad – If I were to add up all the days of Hannah’s life I would venture to say she has been sick more than she has been well

The good – She doesn’t realize it.  She is happy regardless of how she feels and she always tells me that it will be okay and more importantly she says multiple times each day, “Hannah so happy.”

So, yes I am exhausted and the grief at times is overwhelming but I have this amazing kid (soon to be 16 year old) who makes me find the good in the bad and for that (and for this extreme realist) is the best thing ever!

If you think about it and want to say a prayer for my girl, we will take all the prayers we can get.

Before heading to the doctor today. She insisted on wearing her Florida Gator t-shirt. I keep telling her we live in Alabama now but she just looks at me and does the Gator chomp! She is her daddy’s daughter!

 

Selfie while we wait for her shot  (excuse my nasty wrinkles…..Botox is needed on board desperately).

 

Oh my heart…..her smile, even when sick, melts me!

Until next time……..