Welcome Home Lexi

In the ICU we had some very tough decisions to make. We had always said that we didn't want Lexi to ever be resuscitated again or put on a ventilator that breathes for her. We knew we might have to face those things at some point during her life with how medically fragile she is. At the same time there is a lot of grief and fear over her not physically being here anymore and those are decisions no one should ever have to make.

The doctors were gracious with us in presenting our options. For the first time since Lexi was 3 days old we were given the choice to not pursue any more treatment for our daughter. Lexi was at a point that the usual step was intubation where she would be sedated round the clock while a ventilator breathed for her. We didn't feel comfortable with that but we also didn't feel comfortable doing nothing. We wanted Lexi's body to do what it was going to do without us hindering her recovery or going to extreme measures to keep her with us. The responsibility was a huge weight and I was scared out of my mind of what the future would hold with or without Lexi. I was afraid to face whatever suffering was ahead if she made it. The doctor told me that she would be different after this sickness. Every illness took it's toll on Lexi. Though we still had her physically, mentally she was a lot more checked out than before her health declined. At the same time I knew losing her would change us all.

It turned out that Lexi had a bacterial pneumonia from the flu. Lexi gets the flu every year even though she gets the flu shot. The doctor thought she had a chance of surviving as long as she didn't get any worse so we decided to continue with what we were doing and wait. She was put on the bi-pap machine 24/7 which is a non invasive ventilator to hopefully give time for the antibiotics to work. We were OK with it though because it was a gentler option, did not require surgery and it didn't breathe for her, only helped her breathe deeper.

A couple days in limbo passed before Lexi began to recover almost as quickly as she got sick. After being assured from the doctor that we could do everything at home that they were doing for her at the hospital we came home on hospice with a lot of equipment. We knew we had more time with her but we also knew that we wanted to stay out of the hospital as much as possible for whatever time we had left.

It didn't feel like a victory at first. I was traumatized by our time in the hospital, weary and sick with fear for the future. We had been through a year of battling for her life that ended in a nightmare that wouldn't end. I wanted the agony to stop. I could no longer separate her from her declining health and the intense pain of watching her suffer. I was in a very prideful head space, thinking I knew better than God. I would think thoughts of how better off she would be in heaven. It was part of the lesson of knowing my place in all this isn't to decide what should be. I have to deal with what is.

Daniel chose to look at the gift of time as a positive, a chance to make sure we have no regrets about the way we have loved Lexi. His attitude was hard for me because it was really convicting. My heart was thankful in part. I do believe Lexi brings a lot of good to our family, especially our boys. I know the 3 of them will all be better men for having her as a sister and I want them to have memories of her.

My continual prayer to God since then has been for him to show me the good He is bringing from Lexi's life. This blog and people sharing with me in response have been a huge part of that. Seeing her story helps people doesn't make her pain OK but it does reveal the beauty in it. Her life has purpose. Her experiences are hard but they are meaningful.

This Walk Is Not For The Faint Of Heart

Lexi got pneumonia again and again. I think the total was 9 times in one year. We visited the hospital more regularly and the ladies had to call an ambulance several times for different reasons, her not breathing or throwing up blood. Daniel missed a lot of work. I went numb and started having more issues with my health, stomach problems and random chest pain. After a particularly bad sickness my eye was randomly twitching.

We try to avoid the hospital at all costs because it's very hard on Lexi and our whole family for her to be there. Our pediatrician is amazing and he helped us manage many things from home that a regular kid probably would have been hospitalized for. So when I called on a Sunday to get his advice on Lexi turning yellow he gave me the option of getting blood drawn at the hospital or waiting until the next day and coming into the office. Daniel changed Lexi's diaper and she started screaming in pain so we decided it couldn't wait.

I went to the local emergency room hoping it would be a quick fix with antibiotics. Instead, they discovered that Lexi's lungs were almost completely filled with fluid and pneumonia. She had been to the doctor earlier that week and gotten an x-ray because we were worried about another lung infection with how sick she was but at that time her lungs were clear. In just a few days things had changed drastically.

We were transferred to the children's hospital where over the next two days Lexi continued to get worse. Her kidneys and liver were shutting down and one lung was completely useless. She was mostly asleep during that time but when she would wake up she would be coughing non stop and throwing up blood. When her heart rate started dropping very low they moved her to the ICU.

Going through suffering does not necessarily make you a better person. Sometimes it just makes you bitter or angry or fearful or selfish. Our life with Lexi has taken me all of these dark places. There are times like this I've begged God to take Lexi home and end her struggle. One of the biggest lessons I've had to learn is that it's not my job to decide if Lexi should be here or not. It's not profitable to even think that way in regards to suffering because I'm not God. He is big and omnipotent where I only see a glimpse of what's going on. She is here which means she is supposed to be. All other thoughts need to be taken captive and put in their place with a right perspective.

To be continued...

This Is Not The Plan

In the beginning of Lexi's 2nd grade year we brought her home to live full time. This had been THE PLAN for years. Ha! (Note to self: do not make plans years in advance.) We always assumed Lexi would come home once she was in school full time and we had a wheelchair accessible house for her. I spent months planning. There was lots of paperwork to transfer her supports over, interviewing caregivers to help us and many phone calls to friends and her caseworker trying to learn the system she would be a part of in order to be home and get her medical needs met.

Through all this Lexi's health was struggling but I kept telling myself it was a part of her hip surgery recovery and not her new baseline. She got Pneumonia once over the summer but was doing well right before she came home because August and September tend to be her best months. She started school and made it a week before getting pneumonia again. I only had scheduled help for her after school and weekend time so I was constantly scrambling to find a caregiver so I didn't have to drag a very sick little girl through the carpool lane at Caden's school or have her coughing and changing colors in the car as I brought Chase to preschool.

There is a lot of turnover in the caregiver industry. Apparently making 11 dollars an hour to do everything for a disabled person is not a dream job for most people. I often felt like I was having to work around my workers lives, as if they were doing me a favor instead of actually doing a job. There were a couple that were amazing but for the most part I felt that I was settling because I was desperate. We had the ladies to do overnight respite 4 nights a month but they wouldn't take her if she was sick. Up until that point we had always brought Lexi home if she was sick. This meant lots of cancelling weekend plans.

There were blessings having her home. I got a lot closer to Lexi. Because of her limitations she is a hard person to know and it only comes through time. I also became friends with one of Lexi's helpers. She was a girl around my age who was real and so sweet with Lexi. I could tell Lexi adored her and I did as well. If you didn't know it Lexi definitely shows preference for people in her life.

 For the first time in Lexi's life there were many people that knew how to take care of her. This was a relief because It's scary to think about something happening to us if we are the only people that know what she needs. It also meant we had options for sitters to go on a date once in a while. We would have someone for her and someone else for the boys but we made it work.  Daniel and I got to have a consistent date night.

But the hard overshadowed the good. Daniel works nights so I was getting up to nurse Parker, put Chase's blanket on and taking care of Lexi by myself 5 nights a week. Lexi has extreme sleep issues on the best of days. While sick she cries and fusses all night long. I was sleep deprived and resentful of Daniel because it felt like his life hadn't changed at all, except for having a cranky wife. He was still doing his stuff but once again my life completely revolved around Lexi and her needs were more than I could handle.

Lexi would take a few weeks to recover from one illness only to go back to school for a couple days and get sick again. One day I was driving home from picking Caden up from Kindergarten with all 4 kids. The big boys were fighting, Parker was crying and Lexi was choking and turning blue. I had already pulled over twice to suction the mucus from her throat. My heart started pounding loudly in my ears and I felt like I couldn't breathe.

It was my first experience with a panic attack.

Life was overwhelming and the pressure of Lexi's care always weighed on me. It was hard to talk to people about the weather without crying. It hurt so badly to see Lexi suffering. I had to stop everything I was involved with at church and couldn't be a help to my friends anymore. My own life was more than I could handle. I felt very alone and was afraid that this would now be Lexi's life. After 2 months she got Pneumonia again. I was unraveling but having learned from the past I went to Daniel before sin and anger took hold of my heart.

This was the gist of our conversation.

"I can't go on like this. If Lexi is with us full time I need you to cut some things out when she's sick (which is always) and be home more. No more college, extra training and working out. I also need to go to the doctor and get antidepressants for myself."

He didn't think that was the right choice for us, especially when we had another good option for Lexi. We decided together that Lexi would go back to the ladies half the week. They missed her and were excited to have her back. I was a little nervous knowing things would be different this time. We could no longer bring Lexi home every time she was ill since she was continually sick. I trusted them though and would be able to relax knowing that they wouldn't hesitate to call if they needed us.

 A huge burden of guilt was lifted in making this decision. It was so clear that sharing her care for the unforeseeable future was in everyone's best interest.

Lexi went back to the ladies. Our heads were above water.

Unfortunately her health continued to sink.

the hip bone's connected to the metal plate

Lexi's new princess room!

Getting lots of love. :)

Let me just say, having a wheelchair accessible house for our daughter ROCKS! There are many little stresses that can become big stresses like back problems when you don't have what you need to accommodate a growing person who will always have the same level of needs as a newborn. It's also pretty awesome to live in a home that is new and picked out just by us. Our house is gorgeous and even now 3 years later I think at least once a day, "I can't believe I live in such a beautiful home!" I would still trade every material thing we have for Lexi's health but it's nice to be more than comfortable on days that are hard.

As I said in the last post, Lexi was enjoying a uniquely wonderful season in her life filled with health during first grade. We were still meeting with her specialists every 6 months for updates on her various issues and her orthopedic doctor told us her hips were being troublesome again which we knew was going to be a lifelong struggle for her. We decided to schedule her 3rd hip surgery in the spring to have the plate and screws removed from her hips as well as fix things in there as best he could.

We didn't even really question this surgery. Her 2nd one we agonized over and it made such a positive difference that I think I had unrealistic expectations for all future surgeries to go just as well. I do remember having doubting thoughts as the time got closer because Lexi was so happy and I knew the recovery would be hard. Anything that's going to cause Lexi pain is scary for me.

What I didn't know is that surgery would change the course of Lexi's health for the next several years. The surgery itself went well but the recovery was a nightmare. Lexi was in a body cast for the 3rd time in her life but this time she was much bigger and the cast was much heavier. It caused painful sores on her and we had to go in several times to get the cast cut back away from her broken skin. She also seemed to be in pain for much longer than previous surgeries. After 6 weeks she got her cast off only to find that her incision was not healing. The doctor had to cut her open again and flush out the wound. He thought it would be best to leave it open to heal and we spent another 6 weeks packing her open wound at home with sterile gauze twice a day.

There was basically a big hole in her hip that we filled with gauze. It was very weird and I had only seen something like it on television or movies. Now there is just a dimple where it once was.

Lexi fully recovered but she lost many things after that. She could no longer lay on her stomach at all without pain. This was difficult because Lexi always slept best on her stomach. It also helped her keep her airways clear at night and not aspirate on her saliva or throw up. She lost the ability to comfortably sit in her wheelchair for more than an hour. Taking her places and school became a lot more difficult. Now it's common to give her pain medicine as a precaution before going anywhere. But the biggest thing it took from her is that her immune system completely stopped doing it's job.

We were about to enter the pit of despair.

(I was trying to think of something to convey how horrible the next year was and the only thing that came to mind was the pit of despair in "The Princess Bride." Dramatic, I know.)

A beautiful Season

Lexi's first day of first grade.

A rare family picture with all of us smiling! :)

The boys on the property getting ready to head to farm preschool.

Lexi with her kindred spirit Kathy

Celebrating Christmas with the two families together.

Baby Parker

The year Lexi went to first grade our family was going through a lot of changes. We sold our house and moved into an apartment above an old barn while we were having a wheelchair accessible home built in Sandy. Lexi's ladies had moved a few months before us and it was actually their barn apartment in Damascus that we were staying in. The apartment had everything but a full kitchen. Since we didn't have a stove I took turns with Gayle and Kathy, making dinners for both families at the main house.

During that time I was pregnant with my fourth baby who turned out to be another boy. We named him Parker Elliot Tatro. While Lexi was at school all day Caden was going to a farm preschool a few mornings a week and Chase was my little toddler sidekick.

We were given much grace in that busyness and Lexi's health was the best of her life. She was able to go to school most days and rarely missed for being sick. This was HUGE!!! In Kindergarten Lexi missed more school than not. With this season of health she was finally able to start using her energy to make some progress on learning new skills. Everyone at school was gaga for her. She was joyful and so fun to be with. It was healing for me to be able to enjoy my daughter without a cloud of sickness and fear hanging over us.

We loved living literally right next store from the ladies which meant that we saw Lexi and shared her care with Gayle and Kathy every day. Since there wasn't room in the apartment she slept in her bed at the main house every night but we did bring her up often to hang out with us in the daytime and we went over there a lot as well.

That pregnancy I couldn't lift Lexi at all. She was a 6 year old and over 40 pounds. That was frustrating for me. It was also the deciding factor to have that pregnancy be my last. Other people probably think 4 kids is more than enough but Daniel and I had always wanted a big family and it was a hard decision to make. I wouldn't say it was really what I wanted but it felt like the responsible choice. After 4 c-sections and knowing that every pregnancy would leave me unable to care for Lexi on my own we were in agreement that it was the right thing to do. Maybe because of that I enjoyed my 4th pregnancy more than any of the others and wasn't in a hurry for it to be over.

Making decisions for the new house was incredibly stressful, especially with Daniel working crazy overtime during Occupy Portland. The apartment was the smallest place we had ever lived in as a married couple and at that point we had 3 kids. But the ladies lived on property and the boys spent a lot of time outside climbing trees and riding their power wheels. Caden's imagination was developing in fun ways and he was always going on some sort of adventure. Gayle and Kathy became grandmas to the boys as well and the boys loved to go spend time with them. It was also wonderful for me to have adult conversation any time I wanted.

I will always remember those 6 months in that barn apartment as one of the happiest times of my life. It got much harder to stay there once we had a newborn and I was more than ready to move when we did but I will be forever grateful for those joyful memories made during that time with Lexi.

Unfortunately that beautiful season did not last. Life was about to get very painful for Lexi and our whole family as a result.

kindergarten

 Lexi's first day of Kindergarten

 Snuggling with brothers after she got home. They missed her!

 Dressing up at school for Halloween

I knew from other parents that the transition to "real" school is often another time of grieving for families who have kids with disabilities. It was definitely a stressful time that required a lot of preparation. Lexi would be going to school for a couple hours 5 days a week. She had to leave the security of people who had known her since birth and move to a new classroom with new people where she was the youngest. This meant I had to train everyone in how to care for her. I had to trust them to read her cues and body language and not push her beyond her limits. It required a lot of faith. With her early intervention therapists a relationship was built before we left Lexi with them. We didn't know one person in her kindergarten program.

The severity of Lexi's disability left us with really one option for school and that was the LEEP program. It was an isolated classroom with other disabled kids. Most of the other kids could not speak and almost all of them had some form of autism and were very busy. The classroom itself was designed in a way that was geared towards autistic kids. There were lots of separate cubicles with not much distractions on the walls. It didn't look anything like the colorful open classroom setting she came from.

Since Lexi is so social I wanted her to spend some time in a regular Kindergarten class as well as the LEEP class that we were offered. This was met with much resistance from the school district at her IEP meeting. When you have a child with special needs you have a yearly meeting for school where they pick apart every thing your child can and can't do and make decisions for them. Once something is in their IEP or individualized education plan the school legally has to provide those services.

It costs a lot of money to educate children with special needs and that money comes from different places. Once Lexi spends time in a regular class that can change how her education is paid for. It wasn't personal at all. But the school district representative who showed up late barely glanced at the paperwork. He had never met Lexi but was the decision maker. He was rude and I left the meeting in tears. I had to fight for it but I did accomplish what I set out to do. Lexi would spend an hour each day in the regular classroom.

The first day of school I walked with Lexi and her aide to the regular kindergarten class. All the parents were smiling, taking pictures and celebrating this big milestone in their children's lives. My stomach hurt. I felt so separate from those other families. Everything about our reality felt wrong.

In the privacy of our own home our situation had become normal for us. I didn't think about what everyone else was doing with their five year olds. But seeing all those typically developing kids the same age as Lexi with their happy families was a shock to the system. While other families were buying backpacks and school supplies I was making several trips to the school nurse and classroom teaching people about Lexi's needs. While other parents left the first day after a few minutes I stayed to share with the kindergartners about Cerebral Palsy and introduce Lexi.

The kids were adorable and had a lot of questions. They accepted Lexi right away. It was beautiful and heartbreaking at the same time. I remember thinking it would have been easier on me to just have her in the LEEP class because I felt comfortable there with those kids and parents. That's where we fit.

All the people working in the special needs class were AMAZING! They had such huge hearts and I could tell that Lexi was loved there. She was the only girl in the class and spoiled. Lexi loved school. They worked with her on making choices through eye gaze as well as using switches or buttons to make choices. She got physical, occupational and speech therapy at school. All of her improvements were slight but I felt encouraged and hopeful that Lexi would continue to make progress on her goals.

By the end of the year I realized it wasn't worth the effort to have Lexi be a part of the mainstream in public school. The regular Kindergarten teacher had 35 healthy kids in her class. She was overwhelmed and didn't have the time or energy to figure out ways to include Lexi. There was no communication from her and inclusion in field trips, parties, or anything that Lexi could have happily been a part of. The only good thing that came from Lexi being in class was that a few girls had befriended her. They would stay with her and her aide at recess and blow bubbles for her, push her wheelchair or read to her. One girl specifically made a connection with Lexi and it was a blessing for me to see Lexi's joy in having a friend. Even so, I never fought to have Lexi in a regular class again.

stay or go

One of the hardest things for me with Lexi's disability is the isolation that comes with her fragility. It is hard to take her out in public. Over the years she has pooped and puked, screamed and convulsed in front of others. She has choked and almost always sounds like she isn't able to breathe very well. It's probably not surprising that once Lexi turned 3 or so, strangers stopped really knowing how to handle this.

We get a lot of stares and awkward comments. It feels like we are always on display. When Lexi was a baby I went to a Cerebral Palsy conference and one of the speakers talked about the difficulties of taking your kids with CP out and about when they are older. It was a lesson on the extra work involved to get out the door and how to be prepared for anything. The conclusion was that it's worth it in the end because the child loves it.

That's where it's different for us with Lexi. She is miserable more often than not when we take her places. She has anxiety and likes most to be home with her heated blanket and cozy chair. She has physical pain and can only tolerate her wheelchair for so long. It's very difficult to enjoy outings knowing she is uncomfortable.

Even though she has so many bad days at home it feels more manageable because all her equipment is here and we don't have people watching us. We still try to have family outings because it's hard for me to accept an existence for her that is only home and doctors appointments even if that's easiest for her. These are not often and rarely fun for me and Daniel but the boys seem oblivious to the stress so that is good. By oblivious I mean that they still act our and are their normal selves. They don't cut us any slack because Lexi is throwing up or turning blue. I think that's healthy but it's also overwhelming.

This is my favorite picture of Lexi. We went as a family to the tulip festival. Chase was a baby and having a rough day so he cried a lot. It was not wheelchair accessible which meant Lexi was getting bounced all over the place. She was pretty cranky about half the time. We went there for the pictures so we set her in front of the flowers and Daniel gave her some big kisses and I happened to catch this magic moment. There were a few other good ones and about 20 others that I deleted that showed the reality of how unhappy she was. But this one is perfect because in it I see the most beautiful little girl who knows she is loved.

"Lord I believe. Help me in my unbelief!"

It started before she was even born as she quietly suffocated in the dark of my womb. I have replayed those last days of pregnancy in my mind over and over again, questioning my choices and wondering if there were clues to tell me what was going on. No one else could have known what was going on inside me but me. How could my baby be dying and I didn't sense it?

I didn't know and it wasn't my fault. It still hurts to think that everything could have been different if she had been born a few days earlier. I used to have a recurring dream. Lexi was in my tummy and I knew she was struggling and I saved her. When I would wake I would have to force myself not to picture what really happened during that time.

Then she's given life for the second time and now her suffering is done in sight. We know by her cries and her coloring and her body that she suffers yet still we are helpless to change it. All we can do is provide a temporary fix with drugs and corrective surgeries.

These hard things have revealed my honest heart. That what I want for my kids more than anything is for them to be protected.

I have made an idol out of keeping my kids from harm.

Every trial Lexi goes through is a block to that goal which is why my heart rages at God. My desire is not for Christ alone. Yes, I love Jesus but I require some things from him in order to give Him my trust. My children's safety and comfort.

I was convicted by a recent sermon that no hard thing can stop us from our goals in life if our goals are to reflect Christ and to love Him and others more. My first thought was "Lord I believe, Help me in my unbelief!"

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...

Change

As the time neared for Lexi to come home the medical foster home she was at was also going through a transition. The RN and her husband would be moving out of country because her husband was continuing his career in the army. The two sisters that were left were Gayle and Kathy. They sat down with us and told us they had found a house in Estacada and asked what we thought about having them continue to care for Lexi after Daniel got home from the academy. It would be just Lexi and another little girl of about 9 who also had cerebral palsy but could talk and walk with crutches. Her nickname was Moogy and she was a sweet, easy little girl to love. She also went to school all day so there was a lot of time that it would be just Lexi at home.

This was HUGE! Even though there would only be two caregivers now they had already gone through the transition of getting to know Lexi and understood what they were entering into. Also, we would be close enough to go over there if they had concerns. They cared for Lexi well and she was bonding with them. She would smile very big when we would bring her back to their house on Mondays. This was painful for me and happy at the same time. I wanted Lexi to be loved when we were away from her but it also felt wrong to be away from her and need help at all. We decided to split our time halfway through the week. She would spend Daniel's 4 work days with the ladies and his 3 day weekends at home with us.

I still had a lot of guilt feeling like I failed Daniel and Lexi but I also saw this as God's provision for our beautiful girl. I was overwhelmingly thankful. I can't even put into words what having their help did for our family and me. It didn't feel like we were settling for an option that was horrible to us because we had no good choices. We knew we couldn't have asked for a better situation if Lexi had to be away from us. I can't imagine what our family or lives would look like if we didn't have Gayle and Kathy. I'm pretty confident though that I would not have the physical or mental health that I enjoy today.

Mind Shift

As much as we tried not to let the new information from the doctor change the way we saw Lexi it definitely had an impact on many future decisions. Right away she was taken off of seizure medicine. She had an EEG again and although she did many abnormal movements none of them showed as seizures and with the added MRI results we were no longer afraid of more brain damage being done by seizures.

I also had to accept that it was not reasonable to assume that Lexi would grow out of her irritability or sleep through the night. At two and a half Lexi's sleeping was still much like the cycle of a newborn with 2 to 3 hour periods of rest followed by awake times. On the recommendation of another mom with a child with CP we decided to try a medication to help her sleep.

Lexi's future did not look bright with possibilities any longer. There was a good chance she would continue as she was for the rest of her life. This was something that made thinking about what was ahead very difficult. The verse I clung to during that time was 2 Corinthians 4:18 "So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal."

MRI

Towards the end of that summer Lexi's neurologist ordered an MRI. We were nervous and excited to see what this test would say about her potential. Our hope was that we would be given some sort of expectations of what her abilities would one day be. We were constantly being asked by friends and family if Lexi would ever walk or talk. The older she got the less we envisioned these to be possibilities but we still held out hope.

The results were far more devastating than we could have imagined. Her neurologist showed us the picture of Lexi's brain. We saw that most of it was missing. All that was there was the brain stem and a little bit of the cerebellum. Her Dr. said it was the worst case of brain damage she had seen in her career. The cells after dying had been absorbed in the body so her head was mostly filled with water. There was only about %10 percent of her brain even there.

The Dr. mentioned her "mental retardation" as she talked about the results. I remember hating that because I saw Lexi as intelligent. Daniel and I struggled to process this new information.

Once again we were faced with what a test told us about our daughter and what we saw with our own eyes. Her neurologist could not account for all that Lexi was able to do. Her results showed that Lexi should have been blind, deaf, and completely unaware of her surroundings. She was missing all of those parts of her brain. Somehow though what was left was taking over tasks of the part that was lost in incredible ways.

We realized that EVERYTHING Lexi does is a gift. Her smiles are a gift. Her laughter is a gift. Her connection with certain people and special bond with her daddy is a gift. Her ability to dream when she sleeps. Her memory. Her fears and anxieties. Her almost perfect vision and hearing. All gifts. The fact that her head has grown normally and is not misshapen is a gift. Her ability to make choices and understand what we say is a gift.

I know there is even more to Lexi than we can see. I'm still confident there is intelligence in her eyes at times when she is fully present with us. I think she is the most beautiful person I have ever known. She loves purely and fully.

It was clear that this test was unable to give us the easy answers we were looking for. We had to wait on Lexi to show us what she could do. We understood more than ever that Lexi is truly a miracle!

Freedom!

The summer that Daniel and Lexi were away was honestly one of the best seasons of my life. I had never lived on my own before getting married so for the first time I could do what I wanted without having to consider someone else. Caden was happy to go everywhere with me. We went to the river with friends and for lots of walks and most days we would go visit Lexi in Portland for a couple hours. I felt free and happy again.

Lexi was doing well and there were no big concerns with her transition to being away from us. I kept short accounts with her caregivers. It was a huge relief to me to be part of a team of people taking care of Lexi rather than all the responsibility resting on my shoulders. We would brainstorm together about concerns that came up and how to address them. I didn't always like other people having opinions about my daughter but overall I was thankful.

I began to loosen up. Gayle and Kathy joke with me now about how uptight I was during that time. I was learning how to enjoy my daughter again and learning how to trust other people with her.

Caden began to act out behaviorally like a regular child. I knew this was healthy and good for him. Our home had been so stressful that even as a little baby he compensated by not making waves, by being perfect. Even now, when things get hard Caden copes by becoming too responsible. Everyone thinks it's so sweet how helpful he is and my heart hurts. I worry about Caden when he doesn't have an emotional meltdown every so often, especially after a hospital stay or extended illness for Lexi. He is very mature emotionally and overall joyful but he is still a little boy.

Daniel loved the academy! He made lifelong friends and it was a good break for him. Our weekends all together were happy and it was an exciting time for our family.

Options

As bad as things were at home I was more fearful for Lexi to live somewhere else and what that would mean for her. The child center was not what we wanted for her and I pictured horrors with a medical foster home. This had stopped me from seeking help earlier. I was also afraid of being judged because I knew that people would think I was a bad mom. I worried that Daniel would regret marrying me because I was weak and not able to handle my life. He loved Lexi so much and I knew it hurt him to think of her not being with us.

I spoke with Lexi's caseworker about our options and we had tentatively decided that Lexi would go back to the child center for three months of respite. This was the only reasonable option with her needs. We also had specific things we wanted for Lexi. One is that she would never be left alone with a man. The rate of sexual abuse for girls with disabilities it's obscenely high. The other is that she wouldn't be alone all day with any one person. I loved Lexi the most and I could not handle being alone with her while she screamed for hours so I definitely did not trust a stranger with her. We also wanted to be able to visit at anytime without calling ahead. This obviously made our options very limited.

Our disability caseworker asked me to be open to a specific medical foster home that was run by 4 people. There was an RN and her husband along with her mom who was a CNA and her aunt. This was a unique house in that they took turns and always had two people on at one time. They also agreed that we could visit at any time during the day.

As soon as we went to their house and met them Daniel and I were both confident that it was the right place for Lexi while he was at the academy. We started the process. I wrote out pages of instructions on Lexi's care and routine. Daniel and I would still be Lexi's legal guardians and responsible for all her medical decisions and appointments. Her caseworker made it clear that we could get her at any time for a visit or for good. We arranged to bring her home every weekend when Daniel came home. Once we had a plan in place I alternated between feeling afraid and relieved.

Back In The Depths

Having a typical baby gave us a taste of what our life could have been and made us realize how different we were from other families. We still had times of joy and lots of love but we would always have sickness, medical emergencies, and screaming as a part of our reality. Our stresses affected our decisions of what we could do and how we could enjoy our time together.

I was becoming increasingly hopeless about Lexi's irritability. It's very common for babies with brain damage to cry a lot but most of my friends kids with CP calmed as they got older. This was not the case for Lexi. Her reflux was doing much better which took about 10 percent of the screaming away but she still required constant attention. When I was alone with her and Caden I wasn't able to keep her happy.

In the mornings when I would nurse Caden I used to jiggle her legs with my foot. Sometimes that kept her from getting worked up. It never lasted though. As the day went on Lexi would become increasingly agitated and start screaming. I remember several times going out to the car to nurse Caden in peace where I couldn't hear her. I knew that she had sensory overload and there were reasons why she screamed all the time but It was getting more difficult to be sympathetic. My whole life was wrapped up in if I could calm Lexi, something I daily failed at. Daniel would get home and I would leave with Caden to go for a walk or just get out of the house. I was desperate to be away.

I started to resent how hard Lexi made my life. It was a struggle to enjoy my little girl. Before Caden I felt like a total failure as a mom but with how easy he was I started to see the problem as Lexi. Daniel knew I was overwhelmed and we started talking about him staying home with the kids and me going to work.

I had spent 2 and a half years listening to Lexi scream for hours a day, powerless to help her, usually by myself with her. I was at my limit, spirit exhausted. My thoughts were getting darker. I thought it was a mistake saving her life when we first came home from the hospital. She seemed miserable so often. One day I was driving home from an appointment with her screaming and had a thought that I should just drive the car off a cliff and end the tragedy that was our family. 

I started getting angry with Lexi during her screaming binges. Sometimes I would yell back. Then I would sob uncontrollably, feeling huge guilt for yelling at my disabled little girl. There was a slow progression of lacking self control in my thoughts and actions. I have seen sin work this way in myself and others many times and it never fails to scare me. Continuing on that path leads you to places you've always despised.

When Lexi was about 6 months old I called the hospital when she had been crying for hours, trying to get some ideas to calm her. I remember the nurse saying, "If you think you are going to hurt your child you need to get help." I was frustrated with the nurse because I felt like she wasn't hearing me. At the time I couldn't even imagine that I could ever be to a point where I feared I would hurt my baby. Two years later I was at that place.

I definitely think I would have gotten to the end of myself eventually even without having other kids. Lexi required more from me than I could give. The postpartum hormonal imbalance pushed things along because it made everything more intense and I felt fragile enough to take drastic measures so that things would not continue as they were.

I started seeing a Christian therapist informally. She was semi retired working out of her home and I just paid her out of pocket. I'm not sure if this helped me. It was good to share with someone but I feared exposure and held back with her. She was passive and listened way more than she offered any helpful advice or knowledge.

The only person I was honest with during that time was Daniel and it took a while for me to get to that place. For the first time in my Christian life I was hiding who I was because I was ashamed and embarrassed. I withdrew into myself and felt far away from the Lord and the people around me.

That was an incredibly lonely place to be. When Lexi was born we had a lot of help and support from our friends, family and church. After our initial trauma everyone else went back to their own lives and Daniel and I were the only ones left in the dark. My family was out of the picture and our church was falling apart. All of the doctors we saw didn't seem to have any clue when it came to Lexi. There was no one to save us. I felt trapped in a life I hated.

Around this time Daniel got a job with the Portland Police Bureau. It was his dream job that he had been working towards for several years. Even though he would take a big pay cut for the first year the benefits were amazing and we knew it was the right direction for our family. He was excited but also nervous because he would have to spend 3 months at the police academy, only coming home on weekends. Neither of us knew how I would manage on my own. It was one of the most painful conversations of my life to tell Daniel that we needed to find somewhere for Lexi to go during that time because I could not take care of her.

Lexi is a big sister!

Right away the adjustment to two babies was a juggling act. Daniel was there for Caden's birth and for some of the day. Then he left to pick Lexi up because there was really no one that could care for her overnight. My friend Karen stayed with me at the hospital which helped with my loneliness apart from Daniel.

The next day Daniel brought Lexi to the hospital to meet Caden. She was sweet with him and loved him right away. After they left I got several texts from Daniel about the horrific ride home. Lexi threw up in the car and Daniel had to pull over on the side of the road to take care of her and spend a half hour trying to calm her down to make it the rest of the way home.

Having Lexi and a baby is really like having twins since her needs are as much if not more than a newborns. After a week Daniel went back to work. I had people coming to help me with Lexi a few hours here and there but I was hormonal and emotional and I still struggled letting other people care for Lexi. I was controlling and micromanaging. It was easier for me to let them hold Caden and take care of Lexi myself.

Caden was a perfect baby. He hardly ever cried and if he did I could always calm him. I bonded with him right away. I had worried before I had him that I wouldn't be able to love someone else as much as Lexi. Even through most of my pregnancy I saw him as an extension of Lexi. My thoughts were that it would be good for Lexi to have a brother, to have an advocate when Daniel and I died someday. As soon as I saw him and heard his cry I was flooded with joy and peace. I can't even describe the delight that Caden brought me. Everything I imagined a little boy to be, everything I imagined having a baby to be I had with Caden. He was truly a dream come true.

Laughter

When Lexi was 18 months old she started laughing. She has a contagious laugh that you can't hear without smiling and cracking up yourself. It turns out she is ticklish, especially under her chin. She has a unique sense of humor, thinking her dad is the most hilarious person and everything he does is funny. It's odd, I know. She also laughs when people dance and when a baby cries. I think she just really likes babies and they make her happy. Something she has in common with her mama.

She used to have this Elmo toy that was kind of crazy laughing and rolling around on the floor and it made her so excited her tongue would make ripples. She would go ripple tongue working up to a giggle and it was hilarious. I wish we could have gotten that on video.

Every single time Lexi laughs the weight of this life is lifted for a moment. All parents are delighted when their child does new things. When Lexi shows us something new there's a huge celebration in our hearts. We are filled with joy and thankfulness!

The Child Center

Lexi's stay at the child center was a very stressful time. I knew the necessity of it. With the added awkwardness and weight of her body cast it was not advisable for a 6 month pregnant woman to be lifting her. Even though in a sense I would get a break while she was there, especially at night I saw being away from her as more of heartache than relaxation for myself. I was anxious and obsessive in my instructions to the staff.

The center is a facility for long term care of people under 21 with needs that make them completely dependent on others for their lives. They also have one floor for short term respite and end of life care. It's run like a hospital but it's home for many kids.

Lexi was in a room with 3 other children. Since I haven't asked permission to share I will make up new names for them. Bradley was a boy a couple years older than Lexi, about 4 and he was across from her. His mom was a single mom I had met at a UCP conference a year earlier. He looked very different from the previous time I had seen him. He was obviously struggling. His mom told me that he had gotten pneumonia repeatedly and was in the hospital so often that she was going to lose her job. She had to accept that she could no longer care for him at home. You could see on her face how hard that decision was for her. We went back to visit the center 6 months after Lexi came back home to find that Bradley had passed away.

Two beds down from Lexi was Jordan. He was a black teenager of about 17. He was a big guy and stinky with similar needs as Lexi. I loved him. It was also scary for me to realize how different Lexi's world would be once she was a teenager and no longer a cute little 18 month old girl. Jordan was a ward of the state and no family ever came to visit him but the affection of the staff was obvious. One of the nurses had tears in her eyes when she told me that at 21 he would no longer be able to stay there since the center was only for children. She didn't think it was fair that kids who lived their whole life at the center had to be moved just because they reached adulthood.

Allison was an adorable baby girl a few months younger than Lexi and in the bed next to her. She cried all the time unless someone was paying attention to her. Her and Lexi would often set each other off and they eventually had to be separated into different rooms because they had too much sympathy for one another. Allison arched her back strongly which meant her tummy was most comfortable for her. She would be on her tummy with toys around her crying until someone passing by would stop and say hi. Volunteers spent a lot of time with her because she was cute and obviously adored the attention.

I'm sure the staff at the center thought I was a little crazy because I visited Lexi every day she was there for most of the day. Daniel would stop by in the mornings on his way to work in Portland and most evenings to check on her. I knew that they were caring well for Lexi physically but my concern was that they couldn't meet her emotional needs. I had a hard time giving up control. I didn't trust other people with her even when I was forced to. They did make a few mistakes those 6 weeks that we overreacted to. Looking back I realize our expectations were unreasonable. We make mistakes with her care all the time and they could not provide the level of care we gave Lexi at home which was one on one or two to one. We were not satisfied with anything less.

She did have a wonderful nurse Aaron who would sing to her as he got her ready in the morning. She adored him. I could always tell when he was her nurse because she would be set up in her wheelchair with all her stuffed friends around her when I got there in the morning. Seeing Lexi happy those days helped ease my guilt at not having her home.

My days at the center were not just spent playing and loving on Lexi. When Lexi was sleeping I was often sitting near Allison reading. She liked me near her and would be happy and I hated to hear her cry. There was also a teenage boy that was there for end of life care that latched onto Daniel and I. He did not have the same level of needs as the other kids there and was the only child that could talk. I asked him many questions about what having a feeding tube felt like and I learned a lot from him. His family lived far away and were only able to come a couple times a month to see him. He was incredibly lonely and sometimes I was a little resentful that I couldn't just visit my daughter without his company. He really wanted Daniel and I to play video games with him.

After Lexi came back home I wondered about him. Time passed and we read an article that he had died. I sobbed, remembering that we never made the time to play video games with him. I will always regret that.

For a long time the child center left a bitter taste in my mouth. There are innumerable overwhelming feelings because all the kids there could be my Lexi. It's not what I would want for her life and so it hurts me that it's home for many. I am thankful though that parents have choices. It takes an incredible amount of strength to make some of the decisions we need to for our kids who are fragile. Daniel and I said when we left that Lexi would never go back there but it wouldn't be long before my desperation would lead me to seriously consider it.

Surgery One And Two

We decided to follow the gastroenterology Dr's recommendation  and get Lexi a feeding tube. This can feel like a step backwards for a lot of parents but for us it just felt like the logical next step. I could not continue to exhaust myself trying to give her the nutrition she needed and I could not watch her slowly fail to thrive as she got bigger. We decided to have it done as soon as possible to give her a little recovery time so that she was used to it by the time she had her hip surgery.

The placement surgery went really well. Then came the time for us to be taught how to feed her. Our nurse came in with the proper equipment. She plugged the extension into the G-tube and poured 4 ounces of formula straight into Lexis empty belly. There was a moment of silence from Lexi before she screamed a horrible pain scream and threw it all up. I was very upset when I found out the nurse that was supposed to be teaching us had never actually done it herself. That nurse avoided us the rest of our stay and someone else who knew what they were doing came and showed us what needed to be done.

The feeding tube changed our lives for the better. It was so nice to be able to give Lexi medication through the port rather than her mouth. She has acid reflux (explaining the throwing up several times a day) and her medication was actually staying down consistently to start the healing of her esophagus. I was able to hook her up for a meal to the pump 4 times a day and sometimes even get things done. It freed me up in a huge way to no longer have to give her a bottle every 3 hours round the clock. There were still times she needed to be held through meals but she usually did pretty good during breakfast and sometimes lunch.

It made things a lot easier during her hip surgery recovery as well. That surgery was very difficult because Lexi was in a lot of pain afterwards and confused. They cut into her muscle and broke bones so we knew it was going to be rough but the reality was worse than we anticipated. We also had to share a hospital room with other patients and all the crying kids woke each other and us parents too many times to count in the night. Not to mention the nurses coming to do vitals on each of the kids. I was 6 months pregnant at the time and Daniel could not take time off work because he needed to save it for after I had the baby so he only stayed one night with Lexi and I stayed the other 4. Hospital stays are never fun but it was by far our worst surgery experience. It was our only Shriners surgery and while I am thankful for the service they provide I prefer Emmanuel for comfort of Lexi and parents a hundred times over. Shriners does have better ice cubes though.

The sad thing about orthopedic surgeries is that healing takes a long time and the casting is it's own form of torture. So after a week in the hospital we still had 7 weeks more of body cast. She would continue her recovery at the child center for medically fragile children. Her time there had a huge impact on me and Daniel both.

Suprise!

When Lexi was 16 months old I found out I was pregnant with Caden. This was an unplanned gift. I was overwhelmed with only Lexi. We could now keep her happy at home with constant attention but I had to work hard to avoid anything that would upset her because once she got upset there was no going back.

We were told it was unlikely what happened with Lexi would happen again but just to be safe I would be considered high risk and get extra careful monitoring. Even with these assurances I was scared through my whole pregnancy because Lexi was a healthy baby until the very end. To this day I have fears for the people I love who are pregnant. I am always surprised when things go right even though I know that is way more common than something going wrong.

We had a lot to figure out. We lived in a two bedroom apartment and I didn't know how anyone would be able to share a room with Lexi who still screamed for hours most nights. Lexi's orthopedic doctor told us that she would soon need to have hip surgery because her legs were criss crossing and her hips were going out of socket. This would be a major surgery with several months of recovery where Lexi would be in a body cast, from her ribs to her toes. We were also trying to figure out how to get Lexi the increasing nutrition needed as she grew. She was not able to eat regular food and drinking a bottle was still slow going.

With all of these concerns there was a sense of rightness and acceptance with the pregnancy. I don't think there ever would have been a good or right time to have another baby with Lexi's needs. She has and will always require one on one 24 hour care. The choice of more kids was taken out of our hands and it shaped the direction the rest of our life would take.

Lexi's First Birthday

By the time Lexi turned one it felt like we had overcome so much. We wanted to celebrate a very hard year and the most beautiful little girl with a big party. I hand made invitations that said "Believe In Miracles" on the front. We partied at the Fosters with our friends and family and it was a joyful time.

Lexi's hospice nurse who we hadn't seen in months came. She brought Sara, a young girl not yet 20 who's baby boy had died a couple years before. I had met Sara in those early days when we thought we would lose Lexi. She gave Lexi the tiara she wore in many pictures. Having her there was a reminder of the gift we had been given in more time with Lexi.

Even though Lexi didn't really eat other than drink milk because she struggled swallowing safely we let her taste things. At her party she got her very own cake. She liked the frosting and was as cute as can be licking the cake.

When I next went to my special needs parent support group I shared about Lexi turning one. These groups started out every month by us passing a timer around and talking about life for our 3 minutes. When I said we celebrated Lexi's first birthday the whole room erupted in applause. They all understood how crazy the beginning of this life is.

Where Are You God?

For years I have struggled with anger towards God for the lot Lexi was given in life. It's ebbs and flows as we jump from one crisis to the next. I have grieved as those without hope, with bitterness and gnashing of teeth. The good can be hard to see underneath the crushing weight of suffering I watch my daughter live with. I can't honestly portray our life without entering into that darkness.

When Lexi was little I would rock her for hours as she screamed, praying for comfort and peace for her. When that didn't come I felt abandoned and rejected by God. I knew He loved Lexi more than I could ever love her. In my limited version of love I would have done anything to spare her that misery and I couldn't understand why He chose not to intervene.

Over time I stopped praying for Lexi because it was too painful. God seemed to be silent in my life. I wasn't willing to hear anything other than what I wanted.

Even as I went farther from the Lord in my attitude and thoughts, becoming more apathetic and doubting his work in my daily life He pursued me. There was one time where Lexi was having a hard day and instead of begging for relief I praised God. I thanked Him for His love and His patience with me. In that moment I had unexplainable peace. My daughter was still crying but I knew God was with me.

As the years have gone by there are still times when I get angry. I think anger is my go to emotion when I am overwhelmed and can't deal with my real emotions. It's easier than facing the truth because there are times when it seems like being vulnerable will shatter me. It hurts too much to say "I'm afraid you don't love me God. This doesn't feel loving. I'm afraid you don't have good things for my life and my daughter."

Jesus is patient with me though. He keeps teaching me over and over again through all sorts of avenues that "His ways are not my ways. His thoughts are not my thoughts." (Isaiah 55:8) It's not my job to weigh the blessings versus the pain in this journey. Most things God does cannot even be seen. My view of God needs to expand and I need to trust He is good even when my circumstances don't feel that way.

Remembering the cross reminds me that Jesus has already proven His love for me in giving His very life for me. He never promised to make my life easy if I follow Him. He does promise "to work all things for the good of those who love Him." (Romans 8:28)

Part of why I'm writing this blog is to grab hold of the positive that God is producing in our dark spaces. My prayer is to see Him constantly in this life with a medically fragile daughter so I can shout to the world that even "If I make my bed in the depths, He is there." (Psalm 139:8)

I think as long as I live I will be working these thoughts out.