Quarantine Has Changed Me

This time of quarantine has been challenging. It has been no small task to take a large step outside of the roles I normally hold to fill the roles that quarantine requires of me. It has been a challenge to decrease the freedoms I have at my disposal. But it also has been a time of readjusting the expectations around my life and that has been a huge benefit. I wanted to take a few minutes to share some of the positive changes that have come out of this time.

1.  I like to go-go-go. It has been life altering to suddenly have to stay in place. I have literally had to learn how to sit on the couch and just BE. In the first days of quarantine I somewhat panicked about this, but much to my surprise I have enjoyed this slower pace. As things being to open and schedules threaten to get busier I am finding myself really weighing the benefit of an added activity. Quarantine has taught me to slow down and protect the time our family has together.

2.  I hate to write this one, because it sounds very shallow, but I have learned the value of “do I really need that”.  My days of heading to Target to stroll the aisles and destress and ultimately buying things I don’t really need have passed.  Amazon Prime doesn’t really have 2 day delivery anymore. And I can’t easily just run through the Starbucks drive through as the line is now 5 years long.  Basically what I am saying is my Instant Gratification habits have died. And I find myself asking “Do we really need/want that?”. And guess what that has helped? Our bank account. Isn’t is magical when you stop spending money aimlessly you have more? Dave Ramsey would be so proud! We have saved so much so that we have been able to do a couple house projects we had trouble saving for before!

3.  God is the same Yesterday, Today and Tomorrow. Our daughter is medically complex but has had a really good few years. The fear of her getting Covid has brought back some of those fears I have had about her health. When I feel the anxiety rise I just have had to come back to the simple truth that God never changes. He is good in all things. That doesn’t mean she won’t get sick, but it means if that happens we will have the strength to get through it. A good friend used to tell me when I worried, “this fear is not upon you, so you don’t have the strength to handle the situation. But God simply does not leave us alone in a fire, so if that situation came about you would have strength to walk through it”. Guess what? Those words have never failed me, and they won’t in this situation either.

4. Expectations make or break the day. This is something that I have worked hard to teach my children during this time. But honestly, I have had to consistently remind myself as well. Expectations need to be realistic, verbalized and agreed upon. I have had to practice setting them with my children during this time, especially as we learned to home school. But practicing having realistic, verbalized and agreed upon expectations has even really helped my husband and I. We go into the days knowing what each other needs which sets the tone for clear communication and mutual goals. 

The beauty of walking through hard things is the great amount of personal growth that can come if we allow the circumstance to mold us for the better. 

Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all.  Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood. 

How Is Your Foundation?

Have you heard the parable about the house built on rock verses the house built on sand? It is from Matthew and is super short and sweet. The gist of it is that if you don’t have a strong foundation, you will not weather the storm.  I think a storm is a great metaphor for living this special needs life. The swells come and can cause some significant damage if we aren’t prepared. 

I think one of the biggest shifts for me as the parent of a child with special needs was becoming aware of when I begin to wilt. It happens over time then one day I wake up and think “HOW DID I GET HERE?”

It is the slow crumble, the neglect of ourselves that leads to a house that has crashed to the ground.   Because when your child isn’t well, isn’t sleeping, is self-harming, or when you have been denied AGAIN for resources you need, it is easy to neglect ourselves and be in the same state as the sandy house if we don’t have a good foundation.

The problem isn’t that we are weary, from time to time. The problem is that we don’t pay attention until it is too late and our foundations are weak and then we fall apart.

 Of course we can and should spiritually prepare. However, I also believe there are very practical, things we can do to have a strong foundation as well.

1.     You have to prioritize yourself. Oh my word! Did I really just write that out?! Yes. You did in fact read that right. YOU MUST PRIORITIZE YOURSELF. You are not a hero for putting everyone’s needs before your own. You, my friend, are human too. And if you are going to take extraordinary care of your child you must first take extraordinary care of yourself. 

 2.     You need to attend to your own health. Both preventatively and when there are issues. Go for your check-up. Establish a relationship with a primary care doctor for you. Go to the dentist. I know, you don’t have time. No one does. But do it anyway. Appointments will get canceled because of your crazy life. RESCHEDULE THEM. I also am a big fan of working out and eating things other than the crust of my children’s sandwiches. But let’s not get crazy. If you are starting from scratch maybe just start with scheduling those appointments? We wouldn’t dream of neglecting our child’s health the way we often neglect our own.

3.     Figure out what brings you to life again and do it. Do you love art? Do you like working out? Do you enjoy wandering the aisles of target alone with no agenda? What is it that recharges you? This is where the trendy topic of self-care comes in. But this isn’t about spending money on expensive luxury things. It is about finding out what recharges you and gives you life. Then make space to do that, regularly.  

4.     Get some help. Build your team. It truly takes a lot of people to help support one individual with special needs. And it is a constant game of finding people to help, that you also trust. Maybe grandparents, a spouse, helper or PCA. Maybe it is a friend or the para from school. You have to have a support team that will not only remind you that you are looking a bit wilted, but that will step in and help you prioritize yourself.  No one will care for your child as well as you do. And that is Okay. Because you need a break sometimes, which is also valid and important.

So what is your foundation looking like? Did you weather the last storm with just a bit of hail damage? Or was it more significant? I would encourage you to look objectively at this and make a plan if you are looking a bit shaky.

Written by Laurisa Ballew

Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all.  Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood. 

Laying Down The Life I Expected

In the beginning I thought I would never get the hang of this chronic life I live. The list of what my daughter “needed” to be successful was never ending (is never ending) and I was an expert at beating myself up over not being enough to get it all done. I jokingly refer to myself as her personal assistant, but if you have a kiddo with special needs you know that isn’t a joke. 

In so many ways I was resentful that I now had to submit to this life I didn’t really choose. Sure, I chose to have kids, but if I’m really honest this isn’t what I thought I was signing up for.

I LOVE my daughter, and I WANT her. But I don’t really love the extra hard that comes with a chronic disability and special needs. 

I was years into our journey before I understood there is a difference between SUBMISSION and SURRENDER. And in so many special needs journeys that I see, people are stuck in a place of submission instead of landing in a place of surrender. 

Submission for me is hard. It feels like I’m being shoved in a direction against my will, and as hard as I might try there is a reality that I am not strong enough to run the other way. And the moment I get used to the idea that in a specific area I am not going to get my way or “fix” her. A NEW area pops up. It’s never ending. You get the point. I don’t like submission. 

But surrender is different. In surrendering I get to CHOOSE to lay down the life I expected to have and then fully step into the life I actually do have. It has a choice involved. 

Often these things come in sequence. We are forced to submit to our circumstances, but in order to move into a healthy place we must choose to surrender to them. Let me clarify, surrendering doesn’t not mean to give up. It just means to stop fighting against.  We can do this in both practical and spiritual ways. 

1. Understanding that you and God are on the same team. That this is NOT what God had for us. He created us to live in community with Him, but also gave us free will and Man chose sin. And thus we live in a broken world. And God is every bit as sad about it as we are. Having the realization that in my sadness as a mother God himself was also heartbroken has become an extremely comforting thing to me.  

2.  Giving yourself a break. While I wish I was talking about a long restorative trip to Hawaii, what I mean is stopping the negative self-talk. You are one person, and you cannot possibly provide every need for your child. And you really can’t for a child with special needs. Having grace for our missed steps is vital.  

3. When you feel the tension rise, that familiar “kicking and screaming” or “this really isn’t fair”, PAUSE and consider, “How would it change things if instead of pushing those feelings off or stuffing them down you stepped into them and felt them?” And then you stood in that discomfort and made a plan. Not a plan to get you out of the situation, but a plan to help you thrive within it. 

Thriving within our life situation  is all about the tools with which we equip ourselves, the God who never leaves our side and the mindset we choose to live out of.

Written by Laurisa Ballew

Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all.  Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood.