*Chapter 4* - "What Now?"

I knew we still had a huge obstacle in front of us; yes Jake made it over that hump but what about the next one. We were going into winter which brings along with it sickness and other siblings bringing home a simple runny nose could mean another hospital stay for Jake. We were warned about the dreaded illness RSV and told for sure it would be another issue that could take his life.

The doctor appointments resumed mostly to just keep Jake stable and treat his symptoms. Many new medications were tried as we were always looking for that balance of not being overmedicated but making sure Jake was comfortable- it is a very fine line. There had to be constant hand washing, changing your clothes right when you enter the door. We all had to change our lifestyle by staying in more to try and keep everyone healthy. There were constant battles with insurance and what they felt should or should not be covered. The battle to qualify for RSV shots that cost about $3000 for each shot that could truly save his life was never ending. With all the medical expenses Jake needed we would try everything and anything we could. I would keep my promise to Jake I felt such a responsibility to keep him healthy, and make sure he made it to Disneyland and the beach.

Life at home began with a sign on the front door that said so sorry due to Jake’s fragile health no visitors if you or anyone you know has had a cold recently you cannot enter. This was difficult for Jake’s siblings because they could not play very much; friends could not come over just in case. The whole dynamics of the family needed to change I started going to the grocery store at 10pm when everyone was asleep to avoid the crowds and try to decrease the chance of bringing home germs. Joel had to travel for his work and somehow I still had to be some what of a wife and mother to my other 3 children and a nurse to my son. I would become so emotionally overwhelmed and exhausted but would fight everyday to go on. We held on to that goal if you can make it through the winter you would probably have a spring and summer. We were blessed with an incredible extended family that would always be there to help. Tyler would wake up and go to Aunt Stephanie’s house almost every day, another example that the Lord knows what you need before you do- Tyler and his cousin Josh are only 3 weeks apart in age. My mom and dad were always there being able to help in anyway possible. Our family became the service project of my extended family. I know I needed to have help but I just wanted to be able and do it on my own. I had to learn how to accept so much service (which was very hard for me) in my families behalf- I would have to fight the feelings of guilt that I was taking more than I could give back. I was truly being humbled by our Heavenly Father for the service being rendered to my family.

I would find myself with any spare moments using the internet in researching and reading books to find my own diagnosis for Jake. I could not stop thinking there has to be something more I can do, some reason why this happened. I was positive I could find a cure because I knew Jake better than the doctors there had to be something they had overlooked. I felt such an urgency that “I have to fix it!” I can’t lose my son to this-if I can find out what’s wrong I was sure I could find a way to fix it. We still kept going to all of Jake’s appointments hoping and wondering each time if today was the day- we would have good news and find some any information that would lead us to fixing Jake’s problems. How frustrating it was to have every test come back and say he is normal. On paper there was nothing wrong with Jake he should be just fine – but something is clearly wrong. How is this possible to not know what is wrong? We resorted to trying things on our own. We needed to find a new way to try and feed Jake. I never wanted him to be hungry I researched and tried anything I could get my hands on, different kinds of tubes and syringes to just drop milk into his mouth. Jake was so patient and tried his best at each of our attempts. Jake and the family had been doing a wonderful job working together and following all of the strict medical needs Jake had. We decided to have a night off and go to the Mayan to celebrate Tyler's 2nd Birthday.

The kids had so much fun they could order anything they wanted and loved seeing all of the new diving shows and for the first time the “whole” family was together having a great time. It was such an amazing night and how grateful we were to do something that all most all families take for granted. How that day meant so much more to us and we wanted to be able to make these special nights happen more in our lives. There became an urgency that everything had to be made special because you never knew if this was going to be the first and the last. Would he could he make it another day or another year?

His first halloween was great he was dressed up as Tigger for a few pictures and was glad when his siblings brought home the stash of candy they had collected!

Jake made it to his first Thanksgiving we couldn't go to the church with all of our relatives and celebrate like we usually did, but we had so much to be thankful for that day. It was great as we stayed home and cooked all day long and enjoyed a great feast with a few close family members. I remember holding Jake in one arm and cooking and stirring for hours with the other arm. I would not have changed a thing. We truly gave thanks to a loving Heavenly Father who was blessing our son. Jake was able to cry a little less, I felt we were able to comfort him more which is an indescribable feeling and need for a mother to be able and calm her child. We still had a lot of work and sleepless nights but it was all worth it. Every member of our family was so attached to and loved Jake more and more each day. We started decorating for the Christmas season and soon to celebrate Jake's 1st Christmas, his stocking was added to the mantel like his brother and sisters. As we shopped for gifts for each other it was special for each one of us to find something special for Jake that he would love. We soon found that all of the regular toys in the stores wouldn’t work for Jake because he couldn’t do any of the things that normal kids 7 months old could do. He couldn’t sit up or even hold his head he couldn’t really reach for anything or move his arms and legs where he wanted them to go. He didn’t make a lot of sounds if he wasn’t crying and since he left the hospital in August he could no longer track an object or see with his eyes. We didn’t focus on these cant’s we only focused on the wonderful things he could do. He loved to be held and snuggled right into your bosom and never moved he was the best buddy to watch a movie with and snuggle with under a warm blanket. He loved music and vibration that he could feel and we all loved to give him massages and keep him warm. He loved movement and swinging. But truly just being able to love him and be apart of his life to feel his strong spirit that grew with light each day was more than enough for all of us. We did a lot of our normal traditions, but in trying to keep everyone germ free we made some new traditions as well. Making sugar cookies together and decorating them; participating in as many family gatherings as we could, and just enjoying the time together more than ever. One thing we decided we would do no matter what was go downtown to see the lights and visit Temple Square. You could barely see Jake by the time we bundled him up taped hand warmers to his body for heat- but I know he loved walking the grounds with all of the beauty and being full of the Christmas Spirit and I believed even though they said Jake couldn't see he could see the
lights of Christmas and feel the love in the air at this special time of year.

Well Jake learned very young and early of another Christmas tradition from his siblings as they were all so excited Christmas Eve they knew they could never fall to sleep so they all slept in Janessa’s bed waiting for Santa to arrive. I think by 5:00am we could contain them no more as they woke up Jake because the youngest gets to start the line downstairs to see what Santa has brought for them this year! It was a beautiful Christmas morning with a light snow falling outside and so many giggles, screams of joy and excitement happening inside. Jake could sense the excitement and feel the love as each sibling helped him open their gifts – something we enjoyed every Christmas Jake was with us. Somehow Jake would always give the best gifts of all- the pure love of Jesus Christ, that Christmas and every Christmas to come Jake was full of light and love to share, what a wonderful magical time of year!

The winter was filled with ups and downs but we took each day as it came and plugged through. There were a lot of good days mingled in with what had to be done each day. We started working extra hard on focusing on things the whole family could do and enjoy. Sledding became one of our favorite past times in the winter we could bundle everyone up make some extra chocolaty hot chocolate and find a great hill. Jake loved the sliding motion and feeling the wind in his face. There were several times when he was on oxygen and we just strapped it down with him and away we went. All of the kids enjoyed our days out sledding, making a snowman and of course ganging up on dad for a snow ball fight. Jake's team always won!

More and more we were delighted and had great joy in what we could do- not what we couldn’t do.

I have a sweet friend who gave me this story that explains how we accepted our new life:

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place,
full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.