I’ll never forget while our stay at the PICU as we left the hospital to get in our car one night we were able to see the air bear land on it’s landing pad. During our over stay at the hospital I had heard it take off multiple times and my husband had saw it land from our window at the Ronald McDonald house. On this particular night it really became real for me. This whole new realm of extremely ill children. I started kissing Ava and Amelia ten times more at night, praying constantly thanking God for such healthy children. We take it for granted, our children’s health. I stood watching as the hospital staff rushed out with a bed to get the Child off the helicopter.
Did you know that Akron Children’s is the home of the air bear the only pediatric helicopter in the state? No, I didn’t either.
It became real, sickness, heartace, and parents who have been through some of the toughest things they have ever endured in their lives. We have never been exposed to this world. The things that we used to worry about in life seem so minute in comparison to the things I have witnessed in the last 3 months. Would I change a thing, absolutely not.
I often have found myself during this time wanting to make it to the next land marker so to speak. When Angie was born it was (does she have downs syndrome, to oh I hope she can drink her bottle, to her gaining weight, then it was things will be so much easier at home, to I can’t wait to her next appointment(maybe we can have a surgery date in mind), to I hope she has the surgery as soon as possible, so we can start to move on).
I feel like I often have this mentality. Always wishing for the next thing, apparently the grass is always greener when X, Y, Z happens.
This past week we found out some news about Angelina’s heart that was heart wreching. Throughout this process she receives what is called an ECHO. It makes sure her heart is functioning proper with the defect, no leaking in her valves, and helps measure pressures in her heart. With the specific heart defect she has, they like if the babies can make it to have surgery between 4-6 months. They need to be between 8-10 pounds. The longer they wait the better, less risks, less chance for more surgeries down the road. When Angie was in the PICU they added in one more medication for her heart to try and help her heart function so they can prolong her surgery.
Angie’s last ECHO was showing that her heart was still functioning fine with the defect. (In time if the defect is not treated blood can flood the lungs causing permanent lung damage).The ECHO we had last week showed hypertrophy in her left ventricle. Hypertrophy is normal with this type of defect to some degree. Her’s is also moving up in to her septum. The heart a muscle can become enlarged and more muscly when a defect is occurring or it is not working properly. Just like our muscles in our body hypertropy(grow) when we lift weights. This can change the rhythm of the heart and block blood flow.The cardiologist told us that he has never seen this in the fourteen years he has been working with heart patients. He didn’t know if it was caused by her defect, which oftentimes is reversed after surgery or if it was something occurring genetically within her genetic make-up. What really caught him of guard was how fast it occurred between each ECHO. He went back and reviewed the previous ECHO and it wasn’t present.
He told me he was going to present Angie’s case to the 12 other cardiologists and surgeons on staff and call me back after they had a meeting of the minds.
I was sick, I mean when I look at her she is thriving. Eating well, growing slow but steady (it’s hard for them to gain given the amount of calories they burn while eating because the heart has to work extra hard). On I drove home, I was crying calling out to God don’t you dare take this child away from me.
SO, we waited for the phone call. Two days of wondering, analyzing, talking about the tough stuff again. I was enlightened, before I was just wanting to move to the next thing but I didn’t realize then we had a direct diagnosis and plan. It was way easier then moving on. Why can’t I just thrive in this season that I merely want to survive in? Why can’t I be content, with what God’s handed me from each moment to moment. WHY IS THIS SO UNBELIEVABLY HARD, if I could only count how many times I have cried out “GOD PLEASE TAKE THIS.”
The dr.told us that what is occurring one of the 12 other doctors have only seen one other time. Genetic testing needs to be done, because they think Angelina has a metabolic disease. Ya, don’t google it because it doesn’t help me understand it any better. Basically, this is how God has genetically engineered her. The Dr. told us that sometimes they have all the medicine in the world and can’t explain why things happen the way they do. He said that surgery might be completely out of the question because if it continues to grow the surgery might not even help. That the large hole in her heart will actually help them have some time to figure out what is causing this to occur.
I’m not sure how I have been able to move on from that phone call. This time I decided I am SO done wishing my life away. It’s not about survival anymore it’s about thriving. Using this season to grow, to embrace every single second with my children. To show my children the unabundant love of Christ.God has handed this to us for a reason and I refuse to merely survive. I want to glorify his name and thrive in a season that is so painstakingly hard.
I am striving for contentment. Praying that either the doctors find a different route or that on Tuesday her left ventricle hasn’t grown anymore and surgery is still on the table. We named this little girl Angelina Hope for a reason, to sprinkle hope to all of those around her. Hope to thrive when they merely want to just survive.
On Monday at approximately 9:35pm Angelina Hope lived up to her name. Words can’t describe what I felt that moment she looked directly into my eyes and gave me a grin. I can truly say their must have been an angel in the room because I just got a little glimpse of heaven. Then again on Tuesday, except this time it was a little laugh and giggle. She is still figuring out the whole smile thing, but I feel like it’s her way of saying: “hey mom, Jesus ya he’s got this, and just relax and enjoy the itty bitty stuffy you always have over looked.”
I came across this except from Billy Graham in my bible and God truly confirmed that it’s time to pray, wait, to be still, to thrive on what he is trying to teach, and to listen.
“No matter where we are, God is as close as a prayer. He is our support and strength. He will help us make our way up again from whatever depths we have fallen. We don’t consider that sometimes jesus is our strength simply to sit still.
“Be Still, and know that I am God.” Psalm 46:10
Our natural tendency when we have a painful happening in our lives is to go into action-do something. Sometimes it’s wiser to wait and just be still. The answers will come. … We may be sure that God is true to his word and answers all sincere prayers offered in the name of The Lord Jesus Christ. His answers may be yes, or it may be no, or it may be wait. If it is no or wait we cannot say that God has not answered our prayer. It simply means that the answer is different then we expected. When we pray for help in trouble, or for healing in sickness, or for deliverance in persecution, God may not give us what we ask for because that may not be his wise and loving will for us. He will answer our prayer in his own way, and he will not let us down in our hour of need.”
From Hope for the trouble heart By: Billy Graham
I know that God has a plan for little Angie’s life. I see alittle more of his plan as each day unravels and I praise him for finally helping me slowly learn contentment and to thrive in seasons of challenge.
“Not that I speak in regard to need, for I have learned whatever state I am in, to be content: I know how abased, and I know how to abound. Everywhere and in all things I have learned to be both full and hungery, both to abound and to suffer need. I can do all things through Christ who gives me strength.” Phillipians 4:11-13
I hope that if you are traveling through a tough season that you to can be still and know that you can do all things through Christ who gives you strength.