Big Changes

If I'm being honest, I've been a ball of anxiety (even more than normal) for several weeks leading up to Levi's birthday. Levi turning 3 has always meant lots of changes for our family. If you know me, you know I'm not really a fan of change. I know that's true for a lot of people, but I like to be comfortable. That's why I'm anti pants. I'm comfortable with our pre-3 routine. Most Sunday's I'm a complete sloth after church. It takes me .5 seconds when we get home to get back in my jammies and vegetate for the rest of the day. Today, the only way I've been able to cope with my anxiety is to not sit down. After my Target shopping trip for Levi's school supplies I have organized said supplies no less than 87 times. In between organizing Levi's school stuff, I organized all his clothes in his closet and storage cabinet. Then I organized Levi's school supplies 82 more times. I'm hoping that blogging will help get my anxiety out of my body. Fingers crossed. Drinking a half a pot of coffee this afternoon certainly has not helped. I'm usually smarter than that. I might need to make a Walmart run for some NyQuil.

Levi turning three means we would say good-bye to SoonerStart, a support team that we had become incredibly attached to. I can honestly say we would not have survived the last 2.5 years without Michelle, Lori, Linda, Susan, and Debbie. I love those ladies like they are my family. They love Levi like he is theirs. Levi will transition to the special education program through the public school and we will gain a new set of providers for him. He's also been approved for nursing care five days a week and won't go to his Nanny's house while we work. All of these changes are an incredible opportunity for Levi to grow and develop, but they also mean Momma has to adjust. Levi has never been left with anyone except our parents and my sister. Ever. Besides Nick and I, our moms are Levi's primary caregivers. Poppy Tom may be just about as nervous as I am for this change. And even though this will be a relief to my dear mother-in-law, I know that everyone in her house will miss seeing him every day, especially her. Tomorrow I will put Levi in his wheelchair and roll him on to a bus and let total strangers drive him away. You read that right. Oh em gee. That gives me butterflies. And tears. No lie, I'm totally going to stalk follow the bus to the school to make sure everything goes smoothly. I may or may not take my binoculars and sit in the parking lot and watch him through the classroom window. I'm not sure which of these changes is giving me the most anxiety, Levi going to school, or the fact that I have to wear pants every evening in my own home since a nurse will be here.  Maybe it'll be a really nice nurse who won't mind that I'm anti pants. We'll see. I'm sure I'll get used to our post-3 routine just as I did to our pre-3 routine and in the long run I know I will it will be amazing for our family, especially Levi.

A few more things before I go. If you'll notice I used Levi's real name this entire blog. Please let his new speech therapist know that I'm already complying with his IEP goal of learning to recognize his name. I asked her which name; Gary, Levonte, Chooch, or Bubbles, and she seemed confused. So we agreed on Levi. Second, I apologize in advance for blowing up your Facebook feed tomorrow with all the Levi posts. Last, thank you for loving and supporting us in this journey. We couldn't survive without all of the Levi fanatics. It truly does take a village.

Nobody Said Life Was Fair

Most of the time I have accepted that we are on this Special Needs Journey and I’m able to manage to navigate the path with strength and grace because I love Levi and that’s what moms do for their children. I love him more than he will ever know and I want him to have the best life possible. I would want this for him even if he wasn’t special needs. Through this journey I’ve been forced to be stronger than I ever wanted to be. Sometimes, I get really tired of being strong and accepting of our new life. Today is one of those days. 

I’m mad. I’m mad that I already buried a baby and in a sense I’ve lost this one too. Although I haven’t had to bury him, we still grieve the loss of a "normal" baby.  I prayed for this baby and was truly grateful for the answered prayer. I still am grateful. I’m mad that I had six months with him thinking he was normal. I was so happy for those six months. My prayer was answered and I had the family I had always dreamed of. I’m mad that this happened to him. I’m mad that I don’t know what “this” is.  I’m mad that his life is hard. I’m mad that every time I think we are making progress, we get punched in the gut with new hardships that Levi has to deal with. I’m mad that our life is full of appointments and therapies. I’m mad that Isaac doesn’t get the brother that he envisioned.  I’m mad that Isaac’s life is limited because of Levi. I’m mad that this happened to my family.

I wouldn’t wish this on anyone else, but I’d be lying if I said I never asked “why us and not someone else?” I’m am human being. I’d be lying if I said it doesn’t hurt to see your normal kids meeting their milestones when I don’t know if my baby will ever say my name or hug my neck. It doesn't mean I'm not happy for you, it just means I desperately wish that was Levi. I’d be lying if I didn’t worry about who will take care of him when I’m gone, or who will take care of him if I can’t.

People say to me all the time "I don't know how you do it." Here's the truth...I do it because I have no choice. I do it because God helps me. I do it because I love Levi. I do it because I have an amazing teammate. I do it with the love and support of our family, friends, and church family. There are days I don't want to "do it." There are days when I'm not strong and I want to give up. The reality is, we struggle. Facebook and social media can be misleading sometimes. A majority of the time people only post the positive things going on in their lives leading others to think (incorrectly) that their life is without struggle or hardship. That's such a lie. Everyone has something. Nobody has a perfect life. I don't want to lie. Our life is hard. Levi's life is hard. Despite that, we still have lots of really good days. We still have faith. We still have hope. Today I'm mad. Tomorrow is a fresh start and I will just keep swimming. Levi needs me to be the strongest swimmer I can be. 

Happy Birthday, Levi!

Oh what a glorious day. Levi is one year old today.  I'm full of so many emotions. I am so grateful that God chose me to be Levi's mom. We've been on quite the journey together this past year and I'm grateful for every single day. Even the bad ones. The bad days are when I learned to trust God the most. I learned I'm stronger than I ever thought I could or wanted to be. I also learned that I'm no different than any other mother. If you were faced with my situation, you would be strong too. You would be strong because that's what mom's do for their kids.

I will never forget May 6, 2014. I was having a light hearted conversation in Levi's hospital room at Cook Children's with my dad, and Levi's god parents. We were interrupted by the neurologist who had the results of Levi's MRI. He took my dad and I to a computer where we could view and discuss the results. I couldn't breathe. Even though I didn't know the results yet, I couldn't breathe. I was already shaking and shivering. This is what we were sent to Texas for, answers. I can't tell you what the neurologist said. It's a blur. All I remember is asking if Levi was going to die. That's all that mattered to me, I could deal with anything else. She said "yes, he will die." I will never forget the look on my dad's face that day. The look of complete helplessness and sadness that his daughter would bury another baby. During those nine days in Texas, I made a decision that I would trust God. I knew we would be ok. No matter what happened, we would be ok. We'd buried Liam, and survived. We would survive again. Nick, Isaac, and I would be ok. We were surrounded by an UNBELIEVABLE amount of love and support from our family, friends, and church. Father Shelby drove all the way to Texas the day after "the news" to be with us and comfort us. I will never be able to explain to him how much that meant to us. He was the face of our church and I felt all of their love and support the day he was there. I was so thankful to have a church family. We were in Texas for nine days. They told us Levi was losing neuro-funtion so we asked to be sent home so he could die at home, were our support was. I remember the day before we left, reading a Facebook post from one of Nick's friends. His friend wrote that her daughter asked to pray for baby Levi. Her prayer was for the doctor's to be wrong about Levi's diagnosis. The very next day we were given the glorious news that in fact the doctor was wrong. Praise God. The doctor was wrong. My baby would live. He would have a first birthday. He would make it to today.

It's been a long road and it's not over. Levi has a lot of rehab left to do, but with all the intervention we are doing, I am confident that I will read this exact blog in a few years and be amazed at how far we came. Levi will have quite a testimony when he's older. I'm still amazed at all the people who love him, pray for him, and have donated money to his care. I will never be able to thank everyone enough for all the love we have been shown this past year. We're just a normal family that had a bad thing happen to them and we got through it with the love and support from each of you. You are all Team Zumwalt!!!

Zumwalt Party of Five

Tomorrow our precious little Levi will be six weeks old. I can't believe how fast it's going by. Every time I decide to blog about our new adventure, there just don't seem to be words adequate enough to describe our new life. I prayed for this baby, and God answered my prayers.

I am an eternally grateful for our new baby. Every time I look at him I am completely in awe that this whole thing worked out and that my prayers were answered. After my stroke and Liam's death, everyone told me that I shouldn't have any more kids. It was too risky. If I had another stroke, I may not be as lucky.  Shortly after that I had a visit with my new rheumatologist. I was heartbroken after my stroke and Liam's death. During that visit he said to me "don't let anyone tell you that you can't have a baby just because you have Lupus." Those few words gave me hope and determination. Those words stuck in my head and I didn't give up on my dream of having another baby. Last week I took my healthy, living baby to my rheumatologist appointment and thanked him for giving me hope that day. It felt like I had come full circle from our darkest moments.

Life with Levi has been easy. I don't know if it's because he's a subsequent child and I know what to expect this time, or if I'm just so grateful that he is alive and healthy. Either way I just feel so overwhelmed with love for him. I don't mind when he cries, when I have to get up in the middle of the night to feed him, changing his breast milk poopy diapers, getting peed on, carrying him and his car seat all over the place, etc. I'm just so happy to be able to do those things because I didn't get to do them with Liam.

Levi isn't a replacement for Liam although he makes us think if Liam a lot. I love that in the last six weeks I have used the phrases "my oldest son" "my middle son" and "my youngest son." My hope is that Levi knows and understands that he has two older brothers. And I hope that he understands that one day, he will get to meet Liam.

Finally, if you didn't believe in the power of prayer before, just look at Levi. He'll surely make you a believer.

I'm Hot, Pregnant, and Blessed Beyond Measure

I'm in the second week of my third trimester. I remember back in February when we found out I was pregnant doing the calculations and figuring out that if we could just make it through July, we'd be smooth sailing. Hello, August!! Unlike most normal people, when we found out I was pregnant we weren't certain if we'd end up with a baby, or more heartbreak. At this point, I can say with 100% confidence, that we are bring this baby home. Oh em gee!!!! I have a lot to do. We haven't planned or prepared much since we weren't sure how it was going to turn out. Our prayers have been answered so I better get busy!

I'm amazed at how fast this pregnancy is going and how easy it has been compared to my other two pregnancies. With out a doubt, I'm healthier during this pregnancy that I have been with the other two. It's started to get a little harder in the totally normal third trimester and it's August kind of way.  I continue to have outstanding weekly check-ups. I'm no longer waiting for the bad news. I no longer live in fear of having my heart broken...again. In about 8 weeks our family will grow. We will be Zumwalt, party of five.

Nick and I have talked a lot about how bittersweet the birth will be. We wanted so badly for the outcome with Liam to be different and I know he will be heavy on our minds and our hearts as he always is. We will rejoice in the fact that we get Levi, because Liam existed. We will love all three of our boys and be grateful for the moments we had with Liam, and the future we will have with Levi and Isaac.

This May Work

With every week I get a little more hopeful that we may actually come out of this whole thing with a living baby. It's been hard to let ourselves get excited since we know the unbearable heartbreak of things not working out the way we planned.

Today we got awesome news. Things are going so well that the Maternal Fetal Medicine doctor released me. Victory! This news did not hurt my feelings at all since I was never a huge fan of hers to begin with. She's very smart and got me to where I need to be, I just never got over the fact that she was so mean to us during our pre-conception appointment where she basically told me I was crazy, going to die, and my baby would be special needs. I know she was doing her job and warning me of the risks, but geez louise she didn't have to be so brutal.

In fact, our little Goo is completely healthy just like his momma. He is measuring nine days ahead of schedule. He is two pounds one ounce and in the 78th percentile. His heart looks amazing which is awesome news since my health issues could have caused a heart block. We are now out of the woods for heart block. My blood pressure is awesome, my lupus is still under control, I still have less than a graham of protein in my urine, I've had no symptoms of stroke, my kidneys are behaving, and overall I feel pretty decent. If I could just get over my meat aversion and reflux, this pregnancy would be a breeze.

We've made it farther than we did with Liam. That's bittersweet. I think about Liam a lot and hope Levi knows that he exists because of Liam. Nick finally got to feel Levi kick, which he never got to do with Liam. It was a big moment. And I am even more confident that we have an even bigger moment coming up this October.

Waiting For Our Goo

I haven't blogged in a couple of months. It's not because I haven't had anything to say, it's because I've been scared to say it. I've been scared to say I'm excited. I've been scared to say I feel good. I've been scared to say things are going well. I've been scared to say all these things because I keep waiting for the other shoe to drop. I'm scared things will end up the way they did last time and Levi will end up living with Liam instead of us. I'm scared that if I'm happy about this baby, it'll mean I don't think Liam is as significant. I see at least one of my doctor's every two weeks and each time I go, I'm anticipating the bad news. And with each visit, the bad news doesn't come. I've made it to 22 weeks and 4 days with NO complications. My body is doing exactly what it's supposed to do.

When I was pregnant with Liam, I was in the hospital by now. I had suffered a stroke, my blood pressure was crap, I started to contract and dilate, my sac was bulging, and my kidney's were spilling 13 grahams of protein. This time, my blood pressure is awesome, my creatinine is better than my OB's, I'm spilling less than half a graham of protein (which means my lupus is under control), and this Goo is measuring 10 days ahead of schedule. What a difference the right treatment makes.With each week my hope starts to become greater than my anxiety. My faith becomes stronger than my fear.

I took a big step today. I shopped for the Goo. I bought his bedding, washed it, and made his bed. My mom bought him some clothes and diapers, Nick has painted the Goo's room, and we are actually starting to act like we are going to come out of this with a living baby. We are planning for Levi Benjamin like he is actually going to live with us instead of Liam.

I want to thank everyone for their love, prayers, and support. It means everything to us that we have such and amazing army cheering us on. I'm going to be pregnant all summer long in this Oklahoma heat and I can't think of any other way I'd rather spend my summer. Waiting for our Goo...