When I created our blog, my intention was to use it as an outlet, to keep everyone informed and updated, and to hopefully inspire and encourage others in some small way. I can honestly say that the posts have gotten more challenging to write. For some unknown reason, I have put pressure on myself that my posts need to be really positive, optimistic, and carefully worded. I’ve lost count of the number of blog entries that I have written either in my head or have saved as drafts on my computer over the past few months. I’ve deemed them too raw, too honest, and figured no one would want to read them. Up until this week, when I was visiting with a friend and slowly letting my guard down about how things have really been going, did she make me realize that it’s okay. It’s okay to let others in, to share the ups and downs, and to be really honest about my feelings, and in doing so I may help myself and others more than I would imagine. So, here it goes, here’s a combination of what I have been holding back since we received our diagnosis in December and the emotions I have been dealing with since Colette’s birth.
Spina bifida sucks. It really does. I’ve never asked God, “Why us, why Colette?” I know that God’s plans are bigger and better than anything I could ever dream and imagine, so I have faith in Him. I hold on to that faith and truly believe that He has amazing and wonderful things planned for Colette and for our family. Spina bifida is a small part of who Colette is, but it doesn’t change the fact that I don’t like that it happened. Deep down I know that I didn’t do anything to cause her spina bifida. However, I do feel responsible in some small way. Even though I did everything I could to ensure our baby would be healthy, I’d be lying if I said that I don’t analyze my pregnancy from time to time and wonder if there’s something that I could have done differently. The reality is that it doesn’t matter. Colette has spina bifida, and she will have challenges to overcome because of this. Children and adults with spina bifida are fighters. They have to be. When you see some of these amazing babies, kids, and adults and what they have overcome, what they deal with on a daily basis, and what is their norm, you’re less likely to dwell on all of the unfair and shitty things that happened in your day. I am often humbled by seeing some of the daily struggles that other families are experiencing. It often puts our situation and challenges into perspective.
I’m scared and haven’t been able to truly get comfortable and let my guard down. As parents we worry about our children. As moms we worry about details that we don’t need to right now…will they be bullied, will they have friends, will they find something they are passionate about, etc. Take all of these typical mom worries and then times that worry by 100. That is how it feels to be a mom of a child with special needs. So, I’ve tried to focus on the present and not look forward to the future too much. Every time I feel like we are making progress, getting comfortable and settled, something seems to pop up and I feel like we’re back to square one.
Sometimes you feel alone and isolated. Unless you’ve been here you really don’t understand how it feels, and it can be a lonely place to be. No matter how great of friends and family you have there is something to be said for having people who ‘get it’, people who have been in your shoes, who can relate to your fears, feelings, and emotions because they have been where you are. People often ask us what we need and what they can do for us. I tell people all the time, prayers, positive vibes, that’s what we need, but what I also want to say is don’t forget about us, keep Colette in your thoughts and prayers. Things are constantly changing in our world, we are constantly seeing different specialists, having different tests, performing different cares for Colette. We may seem like we’ve got it all together but we may really need a hug, to have a cold beer with a friend, we may need someone to vent to, someone to distract us from some of the struggles we’re experiencing. All of the love, support, and encouragement we have received has helped us immensely and keeps me going and pushing through. An occasional hug, words of encouragement, and a surprise ‘I’ve been thinking of you guys’ truly brightens my spirits when we run into friends and family.
It’s okay to have bad days. I’ve put this ridiculous amount of pressure on myself that I always have to be this super strong person who is always positive and optimistic when someone asks me how things are going. It’s been exhausting, so I’ve decided to be more real about my feelings and how things are going. If I need to have a ten minute rant and to have a pity party for the rest of the evening it is okay. I know that I cannot live in the negativity and dwell on what I cannot control. However, it is okay to go there from time to time if I need to cry, to be mad, or feel like we can’t catch a break. We all have those moments and being a strong person definitely doesn’t make you exempt from feeling this way.
There is always someone who is going through something much more challenging. I’ve found that when I am having one of my bad days or am at a low with how things are progressing God gives me a sign to put things into perspective. A lot of these signs come while in a waiting room at one of Colette’s appointments. Last week we learned that it is looking more and more like Colette is going to need a shunt. I took this really hard. Having a shunt is obviously something that we have been hoping and praying to avoid, so when our neurosurgeon said it’s looking like a real possibility in the near future I felt like someone punched me in the stomach. That night I felt sad, was a little negative, cried, began worrying about so many things that I cannot control, and started envisioning some worse case scenarios. The next day Colette had an appointment at a different specialist. While sitting in the waiting room for no more than five minutes I saw two different children who were dealing with much more serious conditions, who were very limited in what they were able to do, and one most likely had a poor long-term prognosis. Both children had smiles on their faces, they were happy. Their moms also seemed comfortable, calm, and relaxed. They didn’t have tears streaming down their faces, they were strong. That was my sign from God. I am strong, and I’ve got this.
Spencer is my rock. I’ve always known that I had a pretty solid partner, but the last six months have really emphasized this. The love, patience, and encouragement he provides is unreal. He is so strong and always picks me up when I’m having one of ‘those’ days. He has dove into all of Colette’s medical needs and has been a true advocate for her, gotten out of his comfort zone, and has been with me every step of the way. I explained to Colette’s therapy and intervention team that Spencer and I are interchangeable, we are equals, and can equally care for her and answer their questions. Their reactions quickly reminded me of how fortunate I am to have a husband who is involved, engaged, and truly cares. It is crazy to think of how much we’ve grown as individuals and as a couple over the last six months. On Wednesday, we celebrate nine years of marriage. I can confidently say that this past year has been our most challenging and rewarding so far. There is something to be said for having the unimaginable thrown at you and for feeling like you’ve come out better, stronger, and more united. God aligned Spencer and I’s paths 16 years ago when we were just teenagers, I have no doubt that he knew we’d need a strong foundation to see us through some of the trials and challenges we have faced this year.
After my first blog post, sharing the news of our baby’s diagnosis, one of my sister’s friends sent her the following poem. I wanted to share it since it is the perfect analogy of our journey as Colette’s parents.
We have been through so much since our diagnosis day in December. It is a little overwhelming to think about all we’ve encountered since receiving our diagnosis. Going through fetal surgery consultation, delivery, Colette’s surgery five hours after birth, the NICU stay, learning new medical skills and procedures, ER visits, the many appointments and tests, and trying to establish and maintain a sense of normal for all three kids among so many other things; to say its been a roller coaster would be an understatement. However, I would not trade it. We have grown to be much more grateful. We’re more appreciative of the little things. Most importantly, we are so thankful for our blessings in the forms of Cade, Cambrie, and Colette. The love and adoration that they all have for one other is amazing to witness. Watching Colette gaze at her older siblings warms my heart, and listening to the heartfelt hope and compassionate nightly prayers Cade and Cambrie have for their baby sister over comes my heart with happiness and fills me with hope for the future.