We went to Rochester for the CT Scan and it was a piece of cake! Livie just laid there and sucked on her pacifier, she was such a good little girl. It took about 15 minutes and then we were headed home. We got the call from the doctor a few days later letting us know that she did indeed have Craniosynostosis. I had a million questions and unfortunately he had only seen this once before and didn't have any answers for me. I did know that the only way to correct the problem was having surgery. I figured that the doctor appointment with the neuro-surgeon and the plastic surgeon would be made right away and for sure thought that surgery would be in December. It was the second week in October and the doctor appointments were not until the week before Thanksgiving. What? That seems far too long to wait. I didn't understand why my baby wasn't a priority to them. Why would they want to wait so long?
I started researching online about her condition and what the surgery would be like. I made a promise to myself to only visit Mayo's website. I didn't want to get a bunch of false information from unreliable sources. I stuck to their website and got the facts. Craniosynostosis is a birth defect that in which one or more of the sutures between the bones of an infant's skull close prematurely, before an infants brain is fully formed. In a child who has this condition, the brain grows but the skull will not grow where the suture has closed. This results in an abnormal head shape. The cranial growth restrictions can result in increased cranial pressure which can cause vision problems and cause developmental delays. All of this information was overwhelming but, knowledge is power.
Two days later, it was a Friday and we were going to my parents for the weekend, Mike walked in the door. He was home early! I thought that was good then we could get on the road early. I finally asked him what he was doing home early. He had lost his job. I didn't think that I heard him right. I asked him the question again and received the same response. Tears started flowing down my face. I no longer knew if we were going to be OK. I didn't know if we as a family were going to be able to survive this. That was a big chunk of money that we just lost. I was only making half of what he made. I was currently on maternity leave and my baby was only 2 weeks old. My income was zero! What were we going to do? How were we going to pay the bills? What was going to happen to us? I didn't think things could get any worse. Then we got the call that the renters we had in our house in Michigan were moving out. Now we had an extra mortgage to pay. I didn't tell anyone for the longest time and a lot of you are probably hearing this for the first time. I didn't want anyone to know for fear they would think bad of us or think it was funny.
The support that we receive from our families is awesome! They are there for us emotionally as well as doing other things as they can. My mom helps out by buying us diapers and food for our shelves. Mike's parents sent some money. I say this with a humble heart, you find out who stands behind you when something like this happens. People call to see how you are doing and you want to cry and tell them everything but, what are you going to say? You should tell them the truth.....but, we don't. You also find out who has been there before. Whether it be through stories or gifts of money here and there. You knew the ones that helped had been in this situation and knew what we were going through.
There is a lesson here to be learned for all of us. First of all I didn't ask for help from anyone. I couldn't ask for help, I was so embarrassed to be in this situation. I was waiting for people to offer the help or ask how we were doing financially. I should have spoken up and asked for help we needed. Now that I have been going through this I know what it is like. I won't let others wait to be asked the questions that I so longed for someone to ask me. I won't wait to drop $10 in the mail to help them. Before, I didn't know what it was like to go through any of this. I didn't know what it was like to have doctor appointments all the time, to have medical bills pile up, to have your husband lose his job, to have all this fear built up inside you. I didn't know what it was like to wonder what bill you should pay and what one you thought would be OK to get behind on. I didn't know any of these things. Well, I do today and I can tell you that my life has changed. I will no longer walk around with my only focus being on me and my family. I am here to help other people. I am here to pay it forward. It doesn't have to be done with just money. I will pay it forward with a hot meal. I will offer to take the kids for the day. I will ask if they need financial help and I will be straight forward and let them know that I expect an honest answer. I will help with a benefit or fundraiser for them. I will educate people on the things that I have learned along the way and I will be there for support. I will do what I can.
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