Saturday, February 8, 2014

Home Again, Home Again, Jiggity Jig

This is what the button looks
like from a side view before
it is inserted.
Yup, you read that correctly, we are home!  What a wonderful word that is!  We are home after a very eventful 8 days in Texas.  This might sound a bit crazy but coming home was bitter sweet.  You see, the doctors and nurses in Texas have been so integral to Gracies care.  While we have been seeing them for four years we haven't really gotten to know them or spent any great amount of time with them until this past fall.  Unfortunately they were always our second opinion.  So we would be in their office every 6 months and a few times here and there when stuff would get crazy and I needed the voice of wisdom.  But since September we have been there every single month sometimes multiple times a month.  Not only have they become like a family away from home, but they have gone above and beyond each and every time to show Gracie how much they love her and how awesome she is!  They have held my hand and helped me in the new stages of Gracies condition and they have helped me to remember that I am Gracie's best expert.  That I am fully capable of taking care of her and that I am doing what is best for her and our family by simply praying for God's peace and following that peace.  When I am in Ft. Worth I am surrounded by people who know the complexities and anomalies in Gracies conditions whatever they may be exactly.  I am surrounded by people who want to help her and do what is best for her and that will spend all day calling several different offices just to get the right things at the right times!


A Childrens Hospital
TOTALLY dedicated
to making kids smile!
But in leaving I am leaving the doctors and nurses that have helped me to get use to the new equipment and pieces of my daughters body that were not there before the surgery.  She now has a G-tube and although she has had one before it is not the same type of G-Tube.  Instead of the Mic-Key button she has the MicroVasive PEG button this go round
.

Loop Recorder and the Process 
She also has a Loop recorder above her heart that comes with two hand held devices that help to download or lock info in with a time stamp.  This will allow us to monitor her heart and watch for any abnormalities that are not consistent with seizure activity or her brain slowing down.  This is the best way to eliminate any possibilities of heart defects/malfunctions that could be secondary from her neurological issues and therefore we can help her heart.  If her heart is fine and it is stopping and going to fast and too slow and not remaining steady, then we will know that it is happening because of her irregular brain activity.  I have left my bubble of security.  Both from the hospital and the support that comes from being in the Ronald McDonald House surrounded by parents who are going through their first hospital stay with a specialist or things that are harder and far more long-term (in the hospital) than I am.  It is this mash up insta-family-ish-community that rejoices when someone gets to go home and celebrates the small miles stones like being able to sit up to the major issues like one of our friends sons was intubated for 29 or so days and then despite having the possibility of being put on ECMO he was able to go through with extubation!!  And that was miraculous!  These mama's and daddy's that were away from their babies for a nap or a meal or a shower while their children were in very serious-very long-term stays at the Ft. Worth RMDH all loved on Gracie, encouraged her, played with her, listened to her, and prayed over her when she was struggling.  We were so grateful to be in such a calm and loving community of people who get it in their own way.

But coming home, well that is home!  It is where my sweet family is.  That sweet family that God has so graciously given me even though I feel so unworthy to be the mom of FIVE kids!!  Let alone a military wife with my current revolutionary sentiments.  It was so adorable to surprise my kids and to be embraced by each at the same time, to have one melt down into a puddle of tears just because they missed me so much!  To hear them talk about how much they missed the little things that I do for them each day.  It made me feel like I was the best mom in the world and I am so grateful for the reminder that I am valuable to them!!

On my drive home I drove past a beautiful cemetery that is where my sweet niece-by-choice was buried just a few weeks ago.  In her very short time on this earth I learned more about love, life, and death than I have ever learned in my 31 years.  It made me realize some of the things that I want to do if I do have to face this challenge with Avagrace.  It also made me realize how lucky I am to have such wonderful best friends and how lucky I was to be able to be there with them during such a private intimate time!  But most importantly it made me realize how close heaven really is and that I have babies in heaven of my own playing with Sweet Gabriella, Princess Ellie-Kate who will forever teach me the meaning of communication and the power of overcoming all obstacles to command center stage and have her crowed turned to putty in her hands (I would let her pull every hair out of my head just to hear her giggle and then hug me before doing it again), Corbin on of the happiest babies I have ever had the pleasure of snuggling and although I only got to hold him once it will be a moment etched in my mind forever, Roland the very first sweet baby funeral I ever attended to my life long friend and big sister for a few years who said this very wise word the day of the funeral "everybody always wants their baby to stay a baby forever, well now I will have my baby forever in heaven!"  {Amen, what is heaven if not with babies!!}, and then there is India this beautiful young lady who was so beautiful that I must say it twice, she was so bright, artistic, and the jewel of her mother's eye and although I never got to meet her, I followed her life very closely on Facebook(stalker..what?).  Her mom is such a positive person and a great encouragement and I have loved to watch the way that she and her girl loved each other so deeply.  And really there are so many more kiddos that this blog could be a roll call.  And that is because I have chosen to love and open up my world to the special needs community and to be involved whenever I can to help and love on others.  Why you ask?  Well for two reasons.  First, I am selfish.  I love it and if I am able to bring someone something to brighten their day then I am on fire!  I often wish that I could win the lottery (that I don't play) for my family of course but for many many many others!  The second reason is because I want to honor My Savior who has loved me, protected me, and given far more to me than I would ever deserve.  But even though I know the facts about the Bible and I believe in the truths…I never really grasped those truths until I was able to be there for Gabriella's birth and then passing.  To hold her and kiss her sweet face.  To love on her and her parents and her brothers and then her sister at the funeral.  This is when I saw how beautiful and peaceful such a horribly sad thing can be.  Nobody wants to say goodbye to a loved one, and absolutely no person in our culture would want to see a child suffer or die.  Yet through being present during Gabriella's short life, I learned more about life than I have ever learned before.  I have learned to rekindle my hope (which use to be a word that I have a love/hate relationship with, I can't tell you how many times I have argued with my Father in Heaven over "what in the world is the point of Hope!")  Well I will say this.  To me, HOPE is not about Hopes within this life, it is that we DO HAVE HOPE because WE DO HAVE HEAVEN and we do get to go and be with HIM there!  And that is why my Hope is in the Lord!  And to think that I did not know that, I mean REALLY KNOW THAT until I met Gabriella!  

Coming home and knowing that I have so many loved ones here in Oklahoma made me feel so connected to this state and to the quick trip to Texas that it has made me question the trip to Colorado in many new ways.  The challenges of finding new doctors that like/love/care enough to treat your child like an individual and not a chart or a paycheck is harder than you think.  This doesn't mean I am backing out…I am just sharing my heart right now and how I hope so deeply that Oklahoma and the FEDS legalize this for the entire country!  If any president could do it, IT WOULD SURELY BE HE.

But, if we do have to go back to Texas again soon, at least we know we will meet some new friends like the ones that we have met this time!  Thank you for loving my daughter!  You gave her such cheer and aided in her healing so much!








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