Grief and Guilt

For over a year this blog has been a place for good news. We have been able to share so many joyful events with all of you. 

Today I come to you about my mother. For months I have been waiting to update you, hoping that the longer I waited, the better the situation would become. Nobody likes delivering bad news. 

Sadly, that's all I have for you today. Bad news. 

In case you don't want to read the bad news, I wanted to say thank you for all of your support. The money you raised help purchase a manual hoyer lift and an electric lift for her hospital bed. My father has also been able to hire a CNA during the day while we are at work who takes great care of my mother.  I also wanted to thank those who have called, texted, gone on grocery runs, and watched our children while we ran out to my dads. 

I had written a very honest post back in August. It sat in my drafts for months, as I was afraid to publish it and make it real. As I updated my blog look, (which BTW is still not finished, but after hours of editing, I gave up) I somehow deleted the post. I can tell you that the post was raw and very emotional . Grief comes in stages and it's safe to say that I was in the anger stage during this time. While anger and depression still lingers, I've been able to move forward and step into acceptance. 

Why am I grieving? My mom is still alive.  I see her about four times a week, multiple times a day. She can still speak. She is alive. But she is in no way living. 

In June, therapy stopped coming. My sister and I still held out hope that she would eventually  be able to sit up, that if we kept up with her exercises that she could get to a point where she could hold her grandchildren. But we are not therapists and our main priority was physically taking care of her which requires a lot of time in itself. 

By August, my sister and I finally accepted the fact that she would not recover like we had hoped. 

My mother, who never stopped going, will never be able to sit up, hold her grandchildren, come over to my house, brush her teeth or hair, see a Christmas tree, or lie next to my father.  She needs 24 hour care. We take shifts for her care. Me, my sister, and my cousin take turns on the nights and weekends.  We change her, lift her into her wheelchair, and much to her dismay sometimes, do her hair and makeup. 

Her memory is hit or miss. She used to be able to hold conversations with us but it's getting more difficult for her. Lately she's had a harder time recognizing voices. Her speech has gotten worse.  Sometimes she lies there counting numbers, sometimes she yells nonstop for my dad even though he is there. She is still on a feeding tube and probably will be for the rest of her life. 

So yes, my mom is still here and maybe some of you are sitting there thinking that we should be grateful. After all, I still get to see her face and hear her voice while there are many daughters out there that aren't so lucky. 

But please understand, that I am still grieving the loss of my mother. I am grieving the loss of what I once knew. It's all a process. My love for her hasn't changed. As a matter of fact, it's grown. 

We were not Loreli and Rory. We fought often and never saw eye to eye on MANY issues. That's not a secret. The secret was how important she was to me. All of the times I took her for granted. All of the vacations I didn't go on because I wanted to prove a point. There were countless times she wanted to teach me how to prepare a holiday meal or watch old movies with her. My response was always the same. "Mom, maybe next time, life is just insane right now. "

Oh hi guilt. 

I've had two panic attacks from attempting to go into Hobby Lobby. It was our Sweeden. We could be so mad at each other, not talk for days, and she could call me up and ask if I wanted to go there and I would drop everything to go. 

I thought that I would be alright during Christmas because I have my children, but as I decorate or attempt to listen to Christmas music, I just feel empty. Fear has started to creep back into my life as I worry that she was the magic and that I'll never feel the same about this holiday again. I'm afraid that all it means now is the anniversary of her stroke and a reminder of the worst Christmas of my life. A Christmas where they told us she may never leave the hospital. 

But I'm trying. I promise I'm trying. 

Thank God for my sister. Between my brother, cousin Marlane, Aunt Linda, Jerod, my sister, I would have fallen apart a long time ago. To my friends who have provided emotional support, I don't know how I will ever repay you. You've cooked me dinner while I just sat lifeless, you've asked every Saturday if I need Starbucks or anything at Aldi, you've left your own families and watched my kids if I had to run over my dads for an emergency. I haven't had to ask for help or support, you just showed up. You are have been present and real and let me scream and cry on you, and that has been the biggest help of all. You have made me stronger so I can be strong for my family. Thank you will never be enough. 

A few people have reached out ,asking how they can help. It's been difficult to answer that question knowing that help would need to be longterm. 

What she needs is therapy. As I mentored, insurance stopped providing therapy in June so she really needs more movement throughout her day. She has become sore and very stiff. Anyone who would be willing to volunteer their time to give my mom some OT, PT, or speech would be wonderful. 

Thank you again for your support that you've already provided. If any changes happen, I will gladly let you all know. Until then,  please continue to pray for both my parents. My dad continues to amaze me. His love for my mom is the most beautiful and selfless act I've ever witnessed. Here's to hoping that you take in every loving moment this holiday season. 

Love, 

Ashlie 

The Good With the Bad

      I promise you I've been meaning to post. I thought once Joseph came home life would slow down. Why I thought that, I'll never know. Two kids are no joke. 

      Since I titled this post, The Good With the Bad, I must start with the good. While life at home has certainly been chaotic, it has also been super wonderful. We enjoyed the little things like our first official walk as a family. 

And our first trip to Moweaqua. 

We've been on many adventures. 

Played hard. 

And celebrated many holidays. 

But best of all, he has enjoyed hanging out with his sister. (most of the time) 

Life has been very good to our family. 

           Joseph has made some amazing progress. He is walking, eating solid foods, and off of his ventilator during the day. Basically, he's a stud. 

          We have a sleep study in the summer which will determine if he can go without the ventilator at night as well. Things are going very well for us thanks to all of you. You all have sent your prayers and well wishes. You searched high and low for us when we needed nursing. I wish I could hug all of you, I really do. You'll never know how much I appreciate your kindness. 

         Now the bad. As many of you know, on December 20, 2016, my mother suffered a severe brain stem  stroke that was caused by her blood disorder.  She had gone into the hospital on the the 18th. They thought they had the clots under control. I talked to her on the 20th as I was closing my classroom down for Christmas break. We were relieved that she didn't have any permanent damage and that she was going to be released before Christmas and that we wouldn't have to spend another Christmas in a hospital. It is now a conversation that I will never forget.  I was supposed to pick her up on the 21st from the hospital and we were going to make Christmas cookies with my sister, our favorite Christmas tradition. 

Christmas 2015

            Little did I know that our favorite tradition wouldn't be completed. Instead,  I received a phone call that morning from my father stating that she had a stroke overnight and was in the ICU. At the time, doctors were very unsure she would survive. While she has pulled through, the stroke has left her with many physical and mental impairments. 

          She currently cannot see. She has no movement on the right side of her body and only 9% strength in her left leg. She can't hold her grandkids. She can't run errands with her daughters. She can't cook Sunday dinners. 

However, she CAN joke and sing. She can laugh and smile. She can eat solid foods to some extent. She can still answer everything with sarcasm.  :) 

         Basically, insurance has been a nightmare. I'm sure no one is surprised by this. It's actually been quite eye opening to see the care for an adult versus care for a child. We were incredibly spoiled with Joseph. We had social workers and doctors fighting insurance for us daily. 

My dad has not been so lucky.  Insurance has ignored every doctor's request to keep her at a skilled nursing facility where she would be getting rehab everyday. They released her from the hospital before she was fully conscious. They gave her 60 days to make progress that doctors have told us could take years.

       So my father retired and is attempting to care for her full time at home. She needs round the clock care. My father, who has some health issues of his own, is doing the absolute best that he can. In fact, one of the most beautiful things to come from this terrible time is to see the love between my parents. I've always known they have loved each other, but my dad is taking his vows, in sickness and in health, to a level I have never imagined. He doesn't leave her.He sleeps next to her bed.  We literally have to force him to leave the house to grab a bit to eat. He's gone toe to toe with doctors and insurance companies. I've never seen this side of him and it's completely beautiful. But it's still not enough. They both need more help. 

            There are still many items that insurance won't cover. When my mom needs a ride to the doctor the cost is $100. She is now in need of many specialists with many appointments ahead.  She would also be able to attend a rehab facility daily if she had transportation. There is a machine called a hoyer lift that would make it possible for my dad to get her in and out of bed. Insurance also wouldn't pay for a feeding pump because that she had been on since the stroke because, "she was attempting to eat by mouth".  Friends, she was taking about five bites per meal. 

            My dad has fought us tooth and nail on this but I am attaching a link to my mom's GoFundMe account that was set up by a family friend. Any amount is appreciated. 

https://www.gofundme.com/medical-expenses-for-rebecca-reader

          God has been so good to us. He's walked us through the valleys and let us sing on the mountaintops. He's given us hope is situations when we thought circumstances were impossible. 

         This my friends, is a deep valley. The medical bills, diagnoses, symptoms, and the little support from care providers have been overwhelming at times. There have been some dark times in conversations with doctors who do not seem to have much hope and being constantly shut down by the insurance companies. Here is what I know. I know my mom and Rebecca Reader is known to show people that she can and she will.

      I love this woman so very much. Her grandchildren are her world. 

        She means so much to my family. I desperately want my kids and my sister's kids to experience sleep overs, cookies, and hugs an kisses from their grandmother. We need someone to help believe in her and believe in her recovery. If you are not able to give finically, please send your prayers. Prayers are more important than money. 

From me, my father, and my sister, we thank you so very much. 

Love, 

Ashlie 

One

Well we made it. Little man is officially not so little anymore. But let's not talk about the past year because you've been with us from the beginning. Let's just talk about these past two months.

Our adoption became final. Joseph was pretty stoked. 

 We had a celebration for the big ONE. We really wanted it to be at home. We really thought we'd have our boy in his room where it's been waiting for a year. But instead we had a small gathering at his hospital. And while it wasn't an ideal location, Jojo didn't really mind. Because he's the best. And the cutest. Here's a million pictures to prove it. 

He loved opening and eating his gifts. 

He thought he was going to love eating his cupcake.

 But he didn't.

He did however love his new best friend, Frankie the Fox.

His sister even behaved for like 20 minutes. 

I also went all 8th grade and made a slideshow with music and everything. If you want to recap his big year on earth, feel free to watch below. I haven't quite mastered iMovie yet, and probably never will, so don't judge. 

So it's been a year and we still aren't home. And it sucks. I took the rest of the year off to make sure I was receiving enough training for Joseph's care. But at the end of the day, I still have to leave him and I am ripped to shreds. While he has been in great care and has been receiving awesome therapy, we are desperate to have him home. Every day that I walk by his empty room it shatters my heart. 

But here's how you can help. We are basically waiting on nursing. Joseph is going to require home health care until we are trach free. That means we need skilled nurses to come to our home everyday and help us out with our amazing boy. Right now, we have two day nurses, but with Jerod's crazy schedule, we still need night nurses.

So how can you help? Well we are looking for nurses who are familiar and trained with a trach and a ventilator. Joseph is vent dependent and also has a G button. He's one year old and has a ton of personality. His favorite hobbies include sleeping, painting, playing the maracas, and flirting with the ladies. Have I convinced you yet? Maybe you need another picture. 

Come on, don't you just want to come hang out with this kid? If you or someone you might know is interested in applying to be his night nurse, please contact Chrissy with Advantage nursing. The number is 618-659-2209. Tell them you would like to apply to be Joseph Henderson's nurse. 

If you have any questions, please message me or email me at teachinginsweatpants@gmail.com. Feel free to share this post and help bring Joseph home! 

Love, 

The Hendersons

p.s. Thank you to Kristin Fanning for capturing the day! 

267 Days

267 Days. That's how long we called Cardinal Glennon home.  For 267 days we walked down this hallway. 

These room brought us so many firsts. First bath, first diaper change, first sneeze, first shots, first bottle, first Christmas. 

It also brought us a lot of firsts that terrified us. First fever, first cold, first ventilator, first desat, first heart rate drop. 

But on January 28th, we left everything we'd become comfortable with and headed to Ranken Jordan Pediatric Bridge Hospital. You might think, "Yes! This is wonderful news!" And yes, it is wonderful for him. This means that Joseph is healthy enough to get out of the hospital. It means that we are closer to home then we have ever been. It means that he's basically been a rockstar since the tracheotomy. 

But, it doesn't mean that I wasn't scared. 

For 267 days we have developed relationships with doctors and nurses. Those doctors and nurses loved Joseph like their own and became a part of our family. I am not sure I will ever be able to thank them enough. 

This journey has been long and at times rough. We couldn't be there every single minute of every single day, but these women were. They were there to answer our phone calls at any hour and put up with my momma bear attidtude when worry and stress had taken over me. These nurses listened to me vent, cry, laugh, and hold me up when I lost hope. 

I have watched them cuddle Joseph and love him, and I have also seen them save his life when he decided to stop breathing. These women mean more to me then they will ever know. They gave Joseph a better life and never gave up on him. They never gave up on us. 

Leaving that day was incredibly hard, but so rewarding. It took a small village to pack us up (you accumulate a lot of stuff in 8.5 months!), but Joseph was ready. In fact, he loved the attention, the ambulance ride, and his first breath of fresh air. 

We have been at Ranken for a few weeks now and his progress has been incredible. He received his helmet a few days before discharge to help reshape his head. He spent too many days checking out the cute nurses and has developed a right side preference. Doctors predict he will only need it for a few months, but as always things could change. 

Right now, Joseph is receiving amazing daily speech, phsychial, and occupational therapy at Ranken.  He also has enjoyed new visitors, meeting friends for the first time, and amazing activities the hospital puts on for their patients.  He is able to move about in a stroller and we can roam around the facility as we please. Just to see him in a stroller is such a joy.

And he's getting special perks like puppy grams. Yes, that's right, it's a real thing.

He is still not sure about his little sister, but we're pretty confident they are going to love each other.

 

We don't know how long we will be at Ranken. We do know that we are closer to home then we've ever been and it feels really good. There is always a chance if he gets sick he could end up back at Cardinal Glennon for awhile, but for now, this is our new home. We are so proud of Joseph and we could not be more thankful. 

January was a busy month. With the transfer of Joseph and the birth of our daughter Eliza, Jerod and I are incredibly thankful. One year during a bible study I chose to focus on the word JOY. I cannot believe how much joy has come from just in one year's time.  This year has been a roller coaster and unpredictable, but worth every single moment. God is so good. 

Lots of love, 

Ashlie