Daddy Steps Up

Once we had three kids it became easier for one of us to take Lexi to appointments and the other to stay home with the boys rather than bringing everyone along. Since I was nursing Chase the logical conclusion was that Daniel would be the one to go with Lexi. This was wonderful for me and also very hard for me to let go of control. 

The doctors Lexi has now are amazing. They hear us as her advocates and respect our opinions as her parents. Even so, all of Lexi's appointments and hospital stays come with a huge amount of stress. Being home I felt concerned for her but it was not the same as being stuck in a room with a crying Lexi and having to hear people's different opinions about what was wrong with her. The truth is no one understands what's going on in Lexi's body or brain. Everyone has an opinion and they often contradict one another. It's very subjective. This is probably the reason we go to far less appointments now even though her issues have increased over the years. We have spent so much time and energy trying to find answers for Lexi and make her life easier and for all of that effort we have not achieved very much. No matter what issue we fix more problems that are worse come up.

The difficulty in being away from the appointments was due to the fact that I am better at interrogation. Daniel is a cop and has superhero skills in being aware of his surroundings. Unless he views someone with suspicion though, he tends to respect authorities and trust them. I quickly learned in Lexi's first two years of life that medical professionals are people too and that we can't rely on them to make decisions for our daughter alone. They don't know her and they are often wrong about her. It's up to us as Lexi's parents to weigh their advice with what we know to be true about our daughter and our long term goals for her life. I never take what a doctor says about Lexi as truth without dissecting it and asking lots of questions first. So there were times I was frustrated when Daniel did not have the answers to the questions I had about what the doctors said or suggested.

When Chase was a baby Lexi had two surgeries. She got her tonsils out and had a second hip surgery to put her hips back into socket. Daniel was there at the hospital for both by himself. I was really proud of the way he handled things and did what needed to be done even though it was hard. Up until that point I felt very alone in the weight of making medical decisions for Lexi. Even though I tried to include Daniel he had to work and wasn't able to listen to what the doctors had to say. For the most part he just let me decide. We usually don't know if we have made the right decision until it's over and that is a lot of pressure. Especially when our choices equal physical pain and suffering for a beautiful little girl. That year we became a team in all aspects of Lexi's care and the responsibilities that come with her. Us working together to help our daughter has been the defining strength of our marriage and brought us closer. We bear the burdens of this life together and we celebrate the successes as ours.

Lexi Gets Another Brother!

I look at these sweet pictures and laugh because this was a CRAZY time! Speaking as a person who has 4 kids, the transition to 3 kids was by far the most difficult. Having one child is really the hardest because your life completely changes but after that I would say 3. This was because we were outnumbered and for us it was like having two newborns and a busy two year old. Since all kids have limitless needs someone always had to wait. It's overwhelming because you can never catch up.

There is a mind shift when you have a big family. You only have so much time and you're forced to learn to let go of your ideas of perfection. You are busy all day but there will be something that doesn't get done. You tell yourself it's good that your kids are learning patience. As for me, I was exhausted and not having as much fun being a stay at home mom.

Caden was a into everything two year old and we battled all day long. He tested the boundaries and kept me on my toes trying to keep him safe and occupied. I hated fighting with him and feeling like he was always in trouble. Even so, parenting my healthy boys at their worst does not compare to our hardest times with Lexi. There are times when Lexi is having a good day and the boys are not and she is actually easier than them. These have been few though.

Chase was a fussy baby who liked to eat for 5 minutes every hour. He had a lot of tummy aches at first and was not a good sleeper. He wanted attention all the time. The good thing was he adored his big brother and sister from the start and they were entertaining for him during the day. At night it was a challenge for me to go without sleep again. I had been sleeping through the night on the nights Lexi was gone before Chase arrived. Now there was no time to refresh and get prepared for Lexi's days home.

Lexi was having increased health issues with ear infections and getting tonsillitis repeatedly. We found the tubes did not stop the infections but made them less painful because the infection could drain out. Yucky, I know. She started having more rough nights of little or no sleep. Her hips were going out of socket so we knew a second hip surgery was in her future.

I'm sure it will be no surprise to hear that our first outing as a family of five was to the doctor for Lexi.

It's My Party And I'll Cry If I Want To

Birthdays for Lexi are not fun. This was her fourth birthday that was postponed for sickness. She was crying off and on through the party and this picture reminds me of the stress of trying to pretend to be happy when the birthday girl was so obviously not.

When Lexi was younger I would plan parties and attempt to celebrate. More often than not the parties would have to be postponed because of sickness and when we finally had them she would cry a lot during or after because she was over stimulated. Since her birthday is in winter which is the hardest time of year for her it's common for her to be sleeping the day away or checked out. I had to accept that the parties were really to make myself feel better. I was trying to convince the world that I treat her the same as any other child. Lexi didn't enjoy them though and it was all honestly ridiculous.

Nine years in I have gone way more low key and her birthdays have become her brothers eating cupcakes in her honor and we have a tradition of doing a movie night. As a family we thank God for the gift of Lexi. For me, it is also day that I let myself mourn as the gap gets wider every year of what a typical child her age would be like. Since she is usually unhappy I hold her and cry with her. I acknowledge that her life is incredibly hard and painful. To me that feels more right than a false sense of celebration. It's also a time that I remind myself of what's true. I know that every tear she cries is not without purpose. I know that her suffering is temporary. I know that her life impacts many for good and that one day she will be free from her broken body. Then she will walk and sing and dance.

Each year, I still pray that Lexi will have a happy birthday. She has had two out of nine so far so it isn't impossible. Just rare.

Lexi Goes to School

Once Lexi turned 3 and they had an opening, she started getting her therapy in a preschool like setting a few hours a week. When we bought our house we purposely chose the location because of the proximity to where Lexi would go to school. We were only a couple blocks away and able to walk there. The program was through early intervention so she was with the same therapists that had been with her since she was 2 months old. This made for an easy transition.

Her time at the preschool was a huge blessing. All the people involved were amazing! They were positive and hopeful about Lexi gaining new skills. They worked a lot on helping her to make decisions through eye gaze so she could have more of a say in her life. Lexi operated toys through switches or buttons and was exposed to a lot of exciting things for her. She really liked school and being with the other kids.

Lexi was still having almost constant ear infections so after visiting a specialist she had a minor procedure where she got ear tubes put in and her adenoids taken out. She did really well and we went home the same day. Any medical procedure with a child is stressful but this was low key for her and us.

During that time I got pregnant with our first planned baby! He would arrive June of 09, when Lexi was 4 and a half.

A Season Of Calm

The next year of life was calm compared to what we had endured up to that point. Lexi got a lot of ear infections and was sick often with regular kid stuff but there was no medical crisis. Our whole family settled into our routine. Weekends were a joyful time because that was when we were all together. Daniel struggled being away from Lexi more than I did because I went to visit her every day she was at the ladies. I still had daily time with her.

I do remember feeling like we always had to give Lexi back when she was doing well and we had her at her worst. This was due to the fact that we brought her home anytime she was sick. It was part of the difficulty of letting go and also knowing that her needs increase to a crazy level when she's not feeling well. If hard decisions have to be made Daniel and I want to be the ones to make them. I also needed to know that she was as good as she can be when she was away from me in order to have peace of mind in my life without her. The worst phone calls from the ladies had Lexi crying in the background because they couldn't calm her. I was thankful to be 5 minutes away when things were hard.

Can I just say that being a police officer is the BEST JOB EVER if you have a child with medical issues?!? Daniel gets made fun of for having no sick time compared to everyone else who stores up hundreds of hours but I'm incredibly grateful for all the times that he is there for Lexi. He has always been available when we needed him since becoming a cop. I was mostly alone before that so I don't take it for granted.

We were coming out of the fog of just surviving and starting to live. It wasn't with the same carefree naivete that I had before Lexi but with the sober wisdom of knowing we would be OK no matter what life brought because God was with us. I had time and energy to help others again and serve at church rather than being only self and family focused. Caden was lots of fun for both Daniel and I and we started talking about having another baby while we had the help of the ladies. We definitely were of the opinion that people who thought regular kids were hard didn't know what they were talking about. It turns out we had some growing to do regarding that attitude...