*Most have read the optionsstory..... I will share a story from Aidens 1st hospital stay.He was 2 weeks old and I was living at the Ronald McDonald house,as I was standing in the kitchen (which is huge,3 floors w/a kitchen on each one) A lady had her 6 year old son with her and as often happens,we exchanged our childs disabilities! Her son had the same heart condition as Aidens,Hypo Plastic Left Heart Syndrome,I was thrilled to meet a mom that had gone through what was ahead of me and Aiden,our future! He was SIX,these kids have a mortality rate that is overwhelming,I never thought we would make it a year much less 6,so I was floored when she said she had made the wrong decision and she regretted letting him live,she was tired of all the hospitals and meds¦but my God,hes 6! I wanted to rush to see Aiden,hoping that my favorite nurse would be there! As I walked to my car I noticed an elderly woman crying (you dont just pretend its none of your business,not here and not under these circumstances) I held out my hand to take hers,her grandson needed a kidney,he didnt have much time and the thought of how he would obtain the kidney is not what people want to think about!We prayed and I got in my car,its less than a mile from DCH,I cried and asked God if his will was for Aiden to pass on and we donate his kidney..I wanted a sign! My favorite nurse was there,I was looking to her for comfort and reassurance, I asked for her opinion! She started at the top of Aidens head,pointing to the many defects he has! She checked off the defects as if she were crossing things off her grocery list He has a deformed right ear,hes deaf,he will battle this heart disease all of his life but he wont actually have a quality of life that would not be a burden on society,he has a very small penis and per her advise,she recommended NOT having a circumcision,he is missing part of his X chromosome,double 6 chromosome,he will be behind his whole life,he may not even have the mental capabilities past 5-8 yr olds this was not what I had expected to hear and by seeing the shocked look on my face she elaborated and gave me her honest opinion,she said she was sick of mothers who know their child will be born with problems,thats not fair to the child and very selfish of parents to assume that the child has a heart beat therefore they will fight,millions of dollars of tax payers money,resources wasted on a child that will most assuredly never be a productive member of society!She shrugged her shoulder and as she turned to leave she saidwell,you asked my opinion,I know its not what you wanted to hear,but think of him and not of yourself! I left the unit for a few minutes,she was right I did ask and is this what God wants,it cant be a coincidence that 3 people had affected me to the point of thinking this was what God wanted! 1) lady w/6 year old regretting having him 2)the grandma waiting for a kidney 3) The nurse advising me to take him home and love him while he was still here,to not make him suffer because of my selfishness! Who was I to play God? I know I have most of this already on the go fund me page,but this is a monumental moment in our journey! I walked back through the double set of double doors,you walk through the first set and the next doors are about 10-15 apart (kind of like the set up at a Walmart entrance) except here theres a burst of air¦.those 10-15 feet can make or break you! You see a mom or dad pushing a wheelchair,wiping drool from their childs mouth,rearranging their childs oxygen tank,making sure that their child is not going to get cold between the double doors and parking garage 30-40 yards away,struggling to adjust and maneuver the wheelchair into a waiting van,wheelchair accessibility is a must! For the rest of their lives,if they pass away before their disabled child,the burden is then placed on a relative! These doctors and nurses do have a point¦.I stand looking up at the atrium,3 floors and murals everywhere,a family excited and relieved when the doctor walks in and says THEIR child is stable or a nurse squatting beside someones chair,whispering and trying to reassure another family! I went up to see Aiden,maybe say goodbye,come to accept the reality that I am being selfish,I dont want him to suffer! Do I want to be wiping drool off his face when hes 15? Cardiology,3rd floor,every floor has a mascot so to speak!This one was a frog (remember that,it will have a huge impact soon) ! I push the big red button(intercom) announce myself and my relation to the patient,I get buzzed through¦.deep breaths,half hearted smile to the nurses station.I stand next to Aidens isolate and stare at this little miracle,this is far from easy¦.God is not making this easy! I didnt hear God but I did hear a throat being cleared,the Dr for the cardiology unit was standing there! I pulled myself together and asked him his opinion! He gave me 3 options,1) Big heart surgery 2) Hybrid surgery ,consisting of 3 heart surgeries-Glenn,Norwood & Fontain 3) take him home and love him while you have him.He left the room,thats 4,FOUR signs¦.I guess God is answering me! The doctor came back in,he handed me a sheet of paper, typed out,right in front of me were my 3 options! OH GOD OH GOD OH GOD¦..WHY?!?!?!?!? I asked for it,he answered! When I was in the elevator on the way up,I had made my decision and although my heart was breaking,his was already broken! I had come to terms¦..I went looking for the doctor,I asked if he and our nurse had been talking,I had also been thinking about how they both said almost the same things! So,technically,it was only 3 signs,all bets are off!!! We will get stronger and I should never have even thought of saying goodbye,he had fought this hard to get here,he had already been through so much,the doctors had a little to do with him being alive,but in just 2 weeks and weighing less than 5 lbs,he wasnt giving up or giving in,he was stronger than any of us,therefore,neither would I¦ All of this occurred within just a few hours,this is an emotional roller coaster of biblical proportion! So,if anyone wonders,I think that might be the answer as to wether I rely on God or not!! Please keep in mind I fought with myself on a daily basis,was I being selfish,would I regret my decision when he turns 6 or have second thoughts when he isnt able to be a normal child,he will grow to be mentally and physically challenged! I went back to the Ronald McDonald House,I see the dad that comes and talks to me while dinner is being served(there are several organizations that volunteer,they provide dinner and serve)¦.My heart is soaring,I had just made the biggest decision of my life,grinning from ear to ear,I am excited to share the good news! He and his wife are facing the lobby desk and speaking to the volunteer staff,as I get closer I can feel the tension,no smiles,no jokes¦I decide to go on up to my room,ill share later! Only later never came,they were at the front desk,making arrangements to check out¦..their 17 year old son had died during surgery earlier that morning! Please feel free to ask me whatever you like,but as I mentioned earlier,this is an emotional roller coaster that has been running for 3 years,you just read 3 hours of those 3 years! I pray to God everyday that I get 3 more,then 30 more!I appreciate your support ,I am Thankful for your prayers and kind words! GOD BLESS YOU!!! Please donate if you can,if you cant,thats ok,we accept comments too!!
Posted on: Wed, 23 Jul 2014 22:36:42 +0000
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