special needs

I Hate Cancer

~ ourhandsgoup ~ 17 Comments

There are days that I hate Leukemia.  I truly hate it.  I get in a place where I just want to punch it.  It’s often on the inpatient hospital days where the room is filled with silence and I have been away from my kids and husband for multiple days and nights.  I just want to be with them.  Then to pacify my time I go on social media and I see all the people living their lives as if nothing is happening.  They are going out, attending parties, going on vacations, going out for drinks, sending their kids to school, going on date nights, going to the gym, going to work and I’m in bed with a hospital bracelet being pumped full of chemo or medicines.  Not that any of these things are “wrong” they are just so far from where my life is right now that It’s unimaginable.  I would give anything to be “living my life” and not stuck in a hospital room isolated from the world.  

Due to the pandemic, Leukemia, then Stem Cell and my always neutropenic status – I have not “lived” the same life as anyone on my social media feed for almost an entire year.  I don’t leave my house except to go to the hospital, the doctor or to pick up my groceries or maybe grab some curbside dinner.  I have not eaten in a restaurant since May 2020 for my anniversary with my husband.  It was an amazing night celebrating our anniversary, which to our surprise was paid for by an amazing mother of a student James had influenced as a thank you.  Boy, did she not realize what a HUGE blessing that meal would be for James and me.  Literally our last date before I was diagnosed with cancer and stripped away for 6 months.  I have not attended a birthday party since 2019.  My children have had to be homeschooled with the exception of Hattie due to her special need for therapy since March 2019 – they don’t love this and complain about it often.  They beg us to go to school, but we continue to say no to keep mama safe.  They fuss but ultimately due understand and want to keep mama out of the hospital, so they soldier on and are so brave.  Due to all of the chemo and the stem cell, my bone marrow is damaged, and my cell counts don’t recover which means I stay very immunocompromised all the time.  I am not allowed to be around children under 12 unless they are my own.  We can’t own or get a new pet.  I can’t take out the trash or change diapers (terrible…I know).  I don’t know what the next day or 2 weeks in front of me will look like or where I will be.  There is so much uncertainty in my life – the only certain thing is change.  Do I dream about my future? Do I imagine growing old with my husband or will I be gone in a few months, a year or a few years?  How do you live your life with such uncertainty about all things?

I miss my husband.  I miss his goofy laugh.  I miss how he just knows and feels when I am down and can make me smile in the darkest of moments.  He and I have been separated more this year then we have been in our entire marriage.  He has missed being able to care for me in my lowest of moments because he needed to be the rock for our children.  He sacrificed caring for me in order to keep stability in an everchanging sea of unknowns for our children.  He has become a single parent.  He has had to learn to cook.  He has had to adjust to life suddenly without a wife.  We both have had to have conversations with our children that we never in our wildest dreams thought we would.  We’ve had to explain death to a seven and five-year-old child and how it relates to their mama whom they hold more precious than gold.  They have asked him “all the mommies that get sick in movies die daddy…Is that going to happen to mama?”

I hate cancer and I love God.  That’s an even deeper dichotomy.  So many times, I want to be angry and stay angry.  I demand to know the end of the story.  I want Him to show me why there is so much pain and tragedy in my family’s story.  I don’t feel like my time on earth is done and I have so many questions – and days will go by that I hear nothing from Him.  There are periods of time when my spiritual life feels drier than a desert under the midday sun.  I tell Him that I don’t feel prepared for this walk.  That I didn’t see this path coming at all.  I ask the Why questions over and over again without answer.  I begin to get discouraged and scared – and then I remind myself that He is Good and faithful.  That he cares for those that love Him.  That He carries my burdens, If I simply ask.  That I am not alone in the fire, but He is there with me.  That I am not alone in the chemo, but He is there with me.  That I am not alone in the quiet hospital room, but He is there with me.  I am reminded of the precious gifts that He has placed in my life who continually bring me laughter and joy.  I am reminded of the special gift that Hattie is and how seeing her progress even the tiniest little bit is a miracle every day and it overwhelms my dry spirit and floods it with rain.  I think of how He paired me with such an amazing partner in this life and convinced him to persue a broken person such as myself.  

No matter how much I hate cancer, God hates cancer more.  His heart breaks for what breaks mine.  His promise of healing is undeniable, but He gives no promise of timing.  How I wished I knew the day and time this battle would end.  That this incredibly hard season might become a little lighter, but He doesn’t reveal this entire map of my life – He just points me in the next right direction. He will cover my children because it’s a promise He’s made with me after many many prayers for protection.  It will be ok.  I have to believe there is a mighty story for Jesus on the other side of this silence and loneliness because God can turn what looks evil to good.  He promised a rainbow around my family and I believe this promise with all my heart.  He has spoken the right words over me so many times.  He has connected me with so many hearts and opened new hearts to pray and hear Him for the first time.  Am I promised tomorrow – no – and that’s what makes living today without hearing my precious children’s voices and touching my loving husband so incredibly difficult BUT I know that I have loved well.

James 1:2

Peace and Love – Kaet

Impossible Tasks

~ ourhandsgoup ~ 1 Comment

So many people I love have asked in the last few weeks “How are you doing?”  Sometimes I say tired, sometimes I say “as expected” with a smile, sometimes I laugh and say we are making it. What I don’t yell out in response is the constant internal dialogue that is literally screaming day in and day out for the past few weeks – gradually getting louder and louder instead of quieter.

As a medical provider, I have an internal dialogue of constant doubt/fear/anxiety.  I laugh and joke about my differential diagnosis always being “corona” but truth is…it’s the truth.  I can’t decide if my chest pain/pressure or shortness of breath is my constant giant amount of anxiety or actual illness. I fear for my family, I fear for my patients, I fear for my colleagues.  I stay awake at night wondering if I might be the vector that brings this virus home to my family or gives it to my higher risk collegues.  It’s not only the patients I see…but its the people out in public I don’t see coming that are the threat.  That is the reality of this virus.  It’s an unseen enemy that might come when I least expect it.  I work at an amazing facility where our leaders and our ER leader is working herself to the bone to protect her staff and patients – but what about that quick grocery trip for essentials…did I wash my hands, touch my face and inoculate myself.  This fear is just not with the medical community, it’s an impossible task for us all.

As a mother – especially one who is working – This new normal is an impossible task.  I became a working mom and not a stay at home mom for a reason.  What we all have been asked to do is impossible – we are taking on roles that ask more of us than sometimes we feel we have.  Not only are we going to work – or attempting to work from home – we are becoming teachers, and therapists.  We are trying to digest this “new normality” mentally ourselves while also being the solid support and ground for our children that need consistency so desperately.  Homeschooling while also working is placing me in a role I never wanted to take on.  As parents we are being asked to fulfill all the roles for our children’s lives. It’s confusing and down right difficult.  We have to transition to teacher every day – our teachers are turning into mentors and online educators with no experience and no time.  I have literally gone through 3 printer ink cartridges in 3 weeks and I have only 3 children!  I have friends who have 5+ kids that are dealing with transitions that are impossible to surmount.  This is not just a strange time…it’s a tasking time.  I am not a preschool teacher – I am a pretend stay at home mom on my best day and I work full time…This is hard.  I am spending my nights making “busy books” and scrolling through pinterest for lesson plans and next weeks schedule where I used to be sleeping or vegging out on my favorite TV show.  I will say that it has helped that we cancelled Netflix right before this (although watching Tiger King sounds amazing right now) because it has helped to foster a shift in my focus.  My children are priorities.  My mind is stretching and We are going to make it.  We are going to walk through this fire and know that our kids are going to be better on the other end.  I have to believe this truth.

As a spouse – this is even harder.  This is weird.  We are around each other ALL THE TIME.  We knew how to parent in our daily life/routine with the constant  back and forth – SOOO  how do we parent when its 24-7 US at home trying to work and live and set healthy boundaries.  When the babies were newborns we would notify each other when we just needed an infant break or a individual moment by saying “TAP OUT, TAP OUT.”  I feel like we are returning back to this.  Sometimes in this new chaos we all just need to TAP OUT for a moment to digest all that we are taking on our shoulders.  And Intimacy…Lets all laugh for a moment.  At the end of the day we collapse in bed – I don’t know who is going to supply this baby boom they keep talking about in 9 months but its not going to be the parents of multiple children locked at home bored and homeschooling.  I snort laugh out loud just thinking about it.   We are collapsing in bed at the end of the day with our list continuing to pile high and our house in complete chaos thankful we are healthy and alive all while being overwhelmed with this new normal. We are trying to have adult conversations over quick bites of food and laundry folding.  James and I keep saying we are going to make it on the porch for a dinner date after the kids go to bed…we will keep saying it.  This is an impossible task but we are going to believe that in the end it will bring us closer.

God is good.  Joy is chosen.  Peace is given.  Our path is known by a creator who loves us and draws us near to Him.  God gives us the capability to do the Impossible things – He speaks to us through scripture with this exact word “We can do all things through Christ who strengthens us.”  He is the waymaker.  He promises blessings over our family.  He casts out anxiety.  

We will make it. We will be stronger.  We will learn the impossible Tasks. But we must not forget in this season of isolation that IT’S OK to feel overhwelmed, alone, sad, anxious – write it out, reach out, talk it out with those you know or anonymous through telehealth.  Fear will win if we allow the normal feelings of this time to consume us and control us – Take action against the impossible and choose your path.  

James and I have started on a venture as group leaders with Nothing is Wasted Ministries.  There are online community groups for individuals to join to be in community with others with similar life stories.  Churches around the world are offering online small groups.  Telehealth visits are running at a 20$ flat fee for our facility.  Find someway to talk this out and know its ok, its ok to feel like we can’t do everything. It’s ok to feel overwhelmed. Its ok to grieve the loss of normalcy and to be sad for the things we can’t celebrate. But in the End, We will all come out stronger, wiser and braver than we ever thought we could be. Happy Quarantining People –

Peace and Joy

-Kaet

Loving those Special Needs Families 101

~ ourhandsgoup ~ 1 Comment

So, I’ve been on a podcast kick recently – I just am enjoy feeling either encouraged by others but also learning this social media world while I spend multiple hours in the car toting kids from here and there.  I was listening to a recent podcast on Risen Motherhood episode 147: How Can I help?: Loving the Friend who Has a child with special needs. It was good and it was right on.  I encourage anyone who knows a family or loves on a family with special needs to go listen to this. It was a round table conversation with 4 moms with children who have various special needs.  I think this conversation in our world especially that in the world of ministry is so important – so I thought I would tag on this in today’s blog.  Here we go.

So, if you are meeting our family for the first time, my name is Kaetlin.  I am married with 4 kids 6 and under.  My 3-year-old began our journey of down the special needs road.  Hattie was born with hypotonia although it was not noticed until 4months when we finally put 2 and 2 together and saw how delayed she was.  Life with Hattie is joyful but let’s be honest its hard.  Somedays its WAY harder than others.  Hattie cannot sit unassisted, cannot crawl, cannot walk but she can use a wheelchair like a bandit.  Her smile will light up a room but her “dog whistle cry” as we call it can break glass and draw A LOT of attention.  She’s very social but has only a handful of words.  We have some signs, but our life is a game of charades.  She has the label Global developmental delay.  Her diagnosis came in April of 2018 – GNB1 Syndrome. It’s a very newly researched and discovered genetic disorder – so there isn’t a bunch of information about what our life looks like in even a year.  

So, let’s talk about how you can help us – this is often a question I get a lot.  Do we think Hattie needs healing – no we believe she is a perfect gift from God, and she is who she is because He designed her that way.  Anything we do is to strengthen her – so pray for strength – in Hattie, In James and me, in her sisters who are learning to navigate questions and that the world is not always accessible. Love us, follow us and live life with us.

So back to the piggybacking on the podcast – Here are some takeaways I had from this special group of ladies.

1st. Ask what will help the child be included in events

Navigating an event for our family is the “normal” parents worry x10.  For our particular case it’s the difficulty of mobility limitations and speech limitations on top of Hattie being SO AWARE of other children’s emotions/feelings.  We worry about Hattie feelings and her being unintentionally left out because she doesn’t speak, she gets overwhelmed easily, she has limited mobility in her chair.   Places that don’t have hard surfaces or have multiple steps levels makes life hard. For us its mobility for others its sensory overload or food allergies.  Be the host that asks how you can make this easier so [insert child’s name here] can be included.  Ask if they need to come early or come late.  Are their certain foods that you can avoid completely or usual foods their child eats and doesn’t have processing issues with that can be included?  Be the friend that doesn’t hesitate to ask – It will not be perceived as rude/nosy/pushy but instead will make us feel important and included.  Its intentional care that means the worlds to already stressed out and worried parents.

2nd.  If we don’t come one time or maybe don’t show up after RSVPing, Ask again

Hattie has mostly good days, but she has some days that events are JUST NOT HAPPENING.  It puts us as parents in a hard spot because we are afraid if we don’t go, it might not happen again.  Also, my husband is SUPER SOCIAL, and loves to get out of the house – so he REALLY doesn’t want to miss but sometimes like I said Hattie’s needs become our family’s needs. If we aren’t there, there is a good reason – and it probably occurred last minute.  Sometimes it’s not Hattie but it is US – Shocker parents can be emotionally spent and drained too!  Sometimes emotionally navigating certain activities is just not a task we can bear.  Just don’t be afraid to ask again and again – invite again and again.  Be the friend that always is seeking friendship and community.

3rd.  If your kid asks a blunt question, we understand their kids – don’t overreact  

Kids say things, they have no filter.  We all have had that awkward moment…in the bathroom…in the grocery store…. And it’s not always about someone else’s differences.  Laugh, be kind and ask them to say hello to the child.  Explain to them maybe after the interaction that sometimes people think/act differently from us and that’s ok! Our family understands this is not out of any malice. Kids are curious.  Parents are curious. We’ve accepted that there’s just going to be some awkward moments in this life.  Let it be awkward, remain calm and then take a positive step.  Point out a positive about their situation – For Hattie the lights being cool IS ALWAYS a go to -We did this on purpose.  We realize her chair is a barrier for some kids – so we designed it to be as eye catching and “cool” as possible.  It lights up like Hattie lights up!

Many kids ask Hattie, her sisters or me – “What happened to her?”  “Did she get hurt?” Seeing a kid her age in a wheelchair is unfamiliar to kids.  They assume she must have gotten hurt and they feel concerned for her.  I hear their concern and its ok families.  I don’t mind answering! It’s part of how Hattie is going to change the world. Be the friend that chooses kindness, peace and a smile.

4th. Ask us how our child is doing but don’t make it ALL we ever talk about.

For a lot of us, we feel like Hattie’s progress is like watching plants grow – we don’t see much progress.  Instead of always asking “how is she doing” tell us something you’ve noticed she’s good at doing or is new to doing.  

Avoid negative convo starters or framing the question in a negative way like “do they ever think she will walk?” with your friends.  It places expectations on us that we already know that she is not meeting.  It’s a reminder that our child is different when every day we are living this truth out.  James and I are positive that the Lord made Hattie special – she is not broken, she does not need healing, she is Joy!  She is a constant reminder of God’s Love – she broke us out of our normal world and brought us into something better than we ever expected.  Is it hard? Well yes, I already mentioned that 80x times, but we wouldn’t choose any other life.  There may be other families that aren’t to that place or have a different view – that’s ok.  We are all unique members of Gods kingdom.  Be the friend that is intentional about asking but also talks about OTHER things.

5th. Don’t try to relate by telling us about your friend’s sisters brothers’ child that has a child with special needs.  It makes it awkward and it isn’t really helpful.

Yes, many people have special needs, but it doesn’t help us have a common topic of conversation. I know nothing about that child – You may be trying to connect apples and oranges without even knowing it.  You may be triggering emotions in that family member that is not positive and might send them reeling for the next 5 hours.  Stay focused on our child.  Point out the positive things you see in our child and if you are uncomfortable with talking about our child – Talk about something else.  Anything else.  Don’t try to educate us either – even if you are attempting to discuss it in a loving manner, it will not be perceived that way.  We just want community.  You may not be able to relate to us about Hattie and that’s ok.  Let’s relate to one another in a different way – the body of Christ has hands AND feet.  Remember that.

6th.  KEEP INVITING US to Church 

A startling statistic they discussed on this podcast was that around 30% of special needs families don’t feel supported by their local church.  This is a hard one to hear but I wasn’t surprised by this.  There’s a LOT of layers to the onion that is starting a special needs ministry and some churches just don’t have the resources to dedicate time to this.  So, what can you do – REACH OUT to those people.  We desperately need community and we NEED the word of God in our lives. Many families are often running on empty all day every day.  A smile and encouraging word for us goes a long way. 

We are incredibly blessed to have a church family that loves our Hattie.  She is VERY comfortable navigating our church but even sometimes she gets overwhelmed or has a meltdown and needs a minute in dads’ arm or locked in the car.  James and I experienced this when we visited a church while out of town and had a COMPLETELY different experience than we do at our home church.  Not that they did not do an awesome job at welcoming our special girl, but she was unfamiliar, uneasy, overwhelmed and did a LOT of “dog whistle screaming”.  James was SUPER anxious (Daddy worries about his little Hattie the most) – James was pacing…  He wasn’t sure if we should send her, but we did, and all was fine.

Sometimes we feel embarrassed.  We don’t want to disturb someone else.  We are always SUPER aware of things and people and as parents we just get nervous.  Sometimes we don’t know why she’s screaming – we are helpless and feel defeated – there really is nothing we can do.  I think other families can relate to this.  Be the friend that helps us by smiling not staring.  If Hattie doesn’t respond to you when you talk to her – its ok to back off, smile and talk to our family instead.  Hattie can be a little diva when she wants to, lol.  Be the friend that doesn’t negatively ask us why we haven’t been at church but just keeps encouraging and desiring for us to return. And hey if you are the pastor reading this – ask what you make it easier for families to attend each week.  Asking specific needs is really great and you could get a lot of great feedback.

And for all those families reading this who have a child or adult with special needs – Keep putting one foot in front of the other.  You are not alone in this fight.  God has big plans for your child even if it is so difficult to see.  You are loved.  You are strong.  We love you and would love to connect.  We have an email – [email protected] that you can connect with us.

Community is key to living this life.

Blessings, Kaet