NavigatingLifeWithLMS

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So frequently I hear the comment “I don’t know how you do it.” Are they talking about the struggles of raising our children without special needs in this unpredictable world we have found ourselves in? What about the lack of time we, as parents, have for ourselves, or together? The comment is more likely about parenting a child with a rare syndrome and battling the unknown world that lies ahead of us. How do we make it as a special needs family?

Raising kids with different abilities

The struggle is real at times; I’m not going to lie. We have three kids full time. Things can get crazy and out of hand, fast.

Jace, he is our full of life, attitude, stubbornness, and all things kindergartner. His starting kindergarten, among many other things, has kept us very busy this school year.

Koda, he is our silly, loveable, playful, singing, dancing little toddler. Our little guy loves to get into EVERYTHING. He never allows for a dull moment.

Kailanie, she is our unicorn preschooler. Born with a rare syndrome, spunk, love, and fighting spirit she keeps us busy. The new leukemia diagnosis adds to the excitement.

We have overcome many challenges raising a child with a rare syndrome. The difficulty level amplifies when you have a mixed bag of needs in the house, and as you can imagine, the anxiety runs full force. As hard as we try, we cannot have life go as planned. Sometimes plans end up better, and sometimes we do not get anywhere close.

We spend a lot of time in the hospital with Kailanie. Extra time in the hospital has caused many issues with Jace. He hates the hospital. He hates that his sister has to be there sometimes. He also hates that our family plans get ruined too often.

We try to make sure he knows it is not Kailanie’s fault. We also try to spend as much family time together as possible, and with each kid individually too. I only work four days a week so we have more time together. I rarely pick up extra shifts, even though I am often asked. My family is hands down more important!

We find a need to prioritize events. For example, Jace has a concert at school, so then Kailanie will be admitted a few days late for her last round of chemo for this stage of treatment. It is important we all be there for the concert to support Jace, as a family.

Establishing a routine has made our home life so much easier. When tension and anxiety can be running high, it is much easier to know what should be happening next. I assure you, not everything goes as planned around here, so we have learned to be flexible. There is a lot of adapting and adjusting.

The most important thing for our family is making sure everyone feels loved, heard, and cared for. We are not perfect, but we are working every day to be better than we were yesterday.

This self-care and date night you speak of, it intrigues me…

Being under one roof as a family often proves challenging. We can almost forget alone time for my partner and I. We do try to find time to spend together after the kids are in bed. Sending text messages throughout the day is a close as we get to a conversation with each other some days.

When so much time is consumed making sure your kids feel safe, loved, and cared for it is hard to find time for self-care, or your partner. I can’t even begin to tell you the last time my partner and I went out…without the kids. It has been so long seriously cannot remember when it was…is that bad?

Does a quick soak in the bath after the kids are in bed count as self-care? I can hardly get all the essential business done, let alone find time for extra things like painting nails, have time to myself, or do things I enjoy.

My hardcore mom guilt makes it more difficult to make extra time for me. Time to myself would be great, but since our family is apart so much, and I work, I feel guilty doing something for just me. I want to make sure I am present for my kids; that I am a person and not just a name.

“I don’t know how you do it”

Too many times I have had someone tell me they are not sure how we do it. That is usually followed by “I would have broken down a long time ago.” Or my favorite “God only gives special kids to special parents.”

Let me stop you right there! Let us back up a minute. We are by no means saints. Who said we had a choice? Ride out this crazy roller coaster ride, or walk away were our two options. For us, walking away was NOT an option. It is a “ride or die” situation.

Who in the heck said we know what we are doing, or how we do it? We are trying our hardest to go with the flow, roll with the punches, and hoping for good results. At times it is trial and error.

I don’t like to mention the numerous times I have broke behind closed doors. The amount of times I let the tears stream down my face because the thought of all we have been through, and all we have left to conquer seems like too much.

Should I even mention how incredibly unfair it is that our daughter was born with a syndrome so rare there are less than 50 people in the world with it? Or how unfair it is that she has to battle leukemia on top of it? As if everything else wasn’t enough, now this!

Do you think we were equipped mentally to deal with any of this four years ago when we found out there would be issues? We were in no way special, superhuman, or anything of the sort when I became pregnant with kailanie. We had no choice but to step up our game for her. Kailanie needed us to be who we have become, so we did, for her.

Back to reality

We are just winging it, that is the reality of it all. We do what we have to do at any given moment to make sure our kids get what they need. We have to prioritize situations and put the most urgent first. So much love and energy go into making our family work, at the end of the day we don’t always have anything left to give.

None of us asked for this, nor would we change our warrior princess for anything. All our kids have made us better as people. Kailanie has taught us unconditional love, and to find strength when we feel we have nothing left.

If you really want to know how we do it, it is simple, love. We have our lovely children depending on us every day. When we are lost in a sea of negative, all it takes is one silly little smile to bring us back to reality. This is their journey, and we are here to love them through it.

I will leave you with this final thought: If Kailanie was your child, would you do what you needed to do? Could you put your game face on and handle it? I hope so!

DON’T FORGET!

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