Have Faith

We've had so much going on around here lately regarding David and appointments for David, I can barely keep it all straight. Even before he got the flu in early December, we had made some appointments in hopes of finding some answers. The first appointment we had was with the genetics doctor that David began seeing when he was 2. We saw him every 3 months for almost 6 years without any definitive answers. After Kyle was born, we agreed with Dr S that it was time to take a break. He had been tested for everything under the sun & we wanted a chance to have a somewhat normal life with the family we had just expanded on. Research was still (and always will be) progressing in the area of genetics. We all thought if we took a break, research could catch up, giving us a better chance of a diagnosis. Fast forward 7 years. It turns out that research still might not be able to provide us an answer. The dr is trying his best to get a full genome sequencing approved through insurance. And even then, it still only gives us a 30-40% chance of finding an answer. At this point, the reason for having a genetic diagnosis isn't as much for us as it is for Kyle. One day when he hopefully decides to have a family, we would love for him to have testing to see if he could possibly be a carrier for whatever it is that David really has. For us, a diagnosis of CP is absolutely fine. No diagnosis will change how we treat David. We've gone years just treating his symptoms as they appear. Genetically speaking, the seizure David had before Christmas sort of changes the way Dr S has always looked at  his case. We still have no idea why the seizure occurred or if he will have another one. As always, going to this kind of dr is very emotionally draining. We've always been told by this dr that David's life expectancy is highly shortened due to his disabilities. It's SO much harder to hear though now that he's almost 15, than when he was only 5. "A couple of decades" are the exact words spoken by the dr. I can hardly talk about it without crying. Even typing it is hard to do. BUT......after talking to a friend who has a terminally ill daughter, I accept it. She said that she can only handle the reality she's been dealt because she knows it's no dr that holds her daughters days. God is the only one that does. So we will continue to have faith in The Lord & keep doing what it best for David. Because giving him quality over quantity is really important to us.

Another appointment we just had was with an ENT. David has been snoring terribly for quite some time now. We highly suspect sleep apnea. And so does the dr. Unfortunately, there isn't really much hope for treating him without a successful sleep study. Which kind of makes me laugh. Because  David barely sleeps at home (last night being a prime example. He was awake ALL night), let alone in a hospital setting with wires hooked to him all night. I have very little hope that we will successfully get this test accomplished. But we will go to the consultation next month just to see of they have ANY ideas to help make for a successful study. I am willing to hear ideas from them. Even if the ENT dr didn't hold much hope either.

This week we have his EEG to check for seizure activity. I am also nervous about this test. We are trying a little sedation with some meds we use at home (the same meds that he had last night to help him sleep, yet he was awake the entire night) in hopes that they will make him drowsy enough to complete the test. I am also going to take one of his weighted blankets to see if we can calm him that way as well. But despite what the test shows, it sort of sounds like no matter what the results show, because he is at such high risk for another seizure, he will be started on some sort of anti-seizure medication. We will follow up with our neurologist after the test results are in to come up with some sort of a plan.

Despite all of these new things going on, both kids are really doing well. David has been happy for the most part. I adore his smiles & laughs. Kyle has been Kyle. He was excited to go back to school & has been a reading machine this weekend. I checked out his report card online & am pleased with his grades. Every grade went up significantly, except for his math. But he did bring that up since progress reports came out, so I'm happy with that! He's also been helping for the most part with his new puppy, Chase. Although since Kyle has a bit of a cough, Michael & I have been the ones taking Chase out in this gross weather we've been having.

New Year. Mostly the same goals. To try to be the best I can be for myself, and for the boys. And with everything that's hit us lately, I'm trying my best just to have faith. Because without it, I don't know how I'd make it through it all.

Here's a peek at what David is doing at 3:00 in the afternoon after staying awake all night. So jealous of him right now!

Normal

This week was so crazy. It started last Wednesday with David having a fever after school. Trip to the doctor on Thursday confirmed strep throat. Home on antibiotic, fever gone on Friday, feeling great on Saturday, only to begin coughing on Sunday night. Tried school Monday morning, only to have to go pick him up before 11. The coughing got progressively worse throughout the day, despite breathing treatments, humidifier, decongestant, and everything else we could think of to do. Back to the doctor on Tuesday. She watched him for 10 minutes of having coughing spasms where he could barely catch a breath in between, his color would leave him, and he couldn't stop. Swabbed for flu and that came back positive. Then it was a whirlwind of arranging for him to be transported to the children's hospital so he could get suctioning & oxygen in the ambulance on the way.

When we arrived at the hospital, they determined that it was all upper airway crud that had to do with excess secretions and snot. They weren't worried about his lungs at all. David didn't even have to have an IV placed since he was tolerating all of his feeds and free water. The nurses taught us how to use the suction machine and pretty much let us handle it from there on. They were all great, but Michael & I are definitely the most confident at handling & caring for David, and I think the staff realized that. The next morning, the doctors concluded that they weren't really doing much for him besides providing the suction machine. So it was determined that we would go home with a script for our very own suction machine. LOL. What every family dreams of owning one day.

By late Wednesday afternoon we were home, where David continued to sleep for almost the entire next 2 days straight (partly because he didn't sleep for more than 10 minutes at the hospital). Last night, we got him out of bed to let him play and he was so thrilled. He didn't stop scooting around until we put him to bed. He still has a lingering cough, but is SO much better. We couldn't be more thrilled that it wasn't worse than it was.

Things can turn on a dime in this house. We're kind of prepared for that when David isn't feeling well. It had been 2 1/2 years since his last hospitalization. But we always know that it can happen. His ability to handle his secretions this past year has become somewhat of a problem. When he's well, he handles it ok, but when he's sick, it's just too much. Having something like a suction machine should help us help him in the future.

I wish this wasn't our kind of  'normal'. But it is. I think it is so normal to Kyle, that he wasn't even that concerned when David went to the hospital. He was just so excited to be able to have a sleepover at a friend's on a school night. It takes a lot of coordinating when you have one kid in the hospital over an hour away and another in 3rd grade just trying to keep up with school & friends. Luckily, everything worked out and we had a ton of offers for help. Those kind of friends are priceless. The amount of praying done on our behalf was phenomenal. While this was a quick hospital stay, I appreciate everyone who threw those prayers our way.

Today.......we are going to try to attempt more of a normal day. Getting David dressed will be one of those goals. We have to finish getting ready for the Christmas season. I need to clean my house and do some laundry. Everyday things that need to be accomplished to function in our day to day living.

So from our family to yours.......Merry Christmas! Here's to whatever your 'normal' may be!

Who Do You See?

Who do you see when you see this child?

 

A child that can't walk? A child that can't control his movement? A child that has severe mental disabilities along with all the physical ones as well?

I see all of that as well. I think about those things every single day. But I also see my child. My first born.

 

 

I see my husband's son. One of his joys & dearest loves in his life.

 

 

I see a big brother. A big influence in my youngest child's life.  Kyle doesn't even know it yet, but David is playing a huge role in shaping who he is becoming.

 

 

Trust me when I say we see his disabilities every day. But that's not all we see. We SEE his heart. We SEE his soul. We see David.

 

Who Do You See?



 

 





I'm Just a Mom

I often get the comment "I don't know how you do it."

I don't totally understand why. I do it because it was my choice to have children. In making that choice, I choose to take care of the children that I have.


I am just a mom to David.  The child who made me a mom. The kiddo who introduced me into the world of special needs. The kid who has great days and really tough days. The person who molded me into who I am right now at this very minute. A love of my life that I worry about daily. For his present life & future life. I worry about the cruel world we can sometimes live in and am thankful that he doesn't understand the impact of humans that can be unkind. I feel the hurt for him.

(Perhaps one day there WILL be a movie about him!)

 



I know that David is not perfect. Neither am I. He is just David and I am just his mom.



I am just a mom to Kyle.  The child who made me a mom for the second time. The kiddo that introduced me to the world of a typical needs child. A kid who has good days and really tough days. The first child of mine to ever utter the words "I love you" to me. A love of my life that I worry daily for. For his present life and his future life. I worry about the cruel world that we can sometimes live in and I can only hope that I can be enough of a role model for him to become one of the many kind humans we have in the world. He has & will always feel the hurt for his brother in the world. He said it best in the car the other day when he said "Being related to David will make us all better people."

I know that Kyle doesn't always make the best choices. He struggles daily with self-control. But I know his heart. I know it when it's happy and when it's hurting. He is a very normal 8 year old boy with special circumstances in his life that he can't always grasp. But I see glimpses of him grasping it daily. He is a boy trying to figure out where he belongs & one day he'll figure it out. I will help him find who he is. Because he is Kyle and I am just his mom.


Two very different boys. Yet at the same time, they have so many similarities. And I love them both very much.

Disappearing Summer

I can't believe that it's that time of summer already.

School registration has been completed for Kyle. The 3rd grader. Tear. I'm hoping for an awesome school year for him. It will be his last year at his elementary school before he heads to BRIJHS in Mansfield next year.  With a new-ish diagnosis of ADHD (the predominately inattentive kind), I'm a little nervous for him to enter a new school year with a new teacher. But fingers crossed and a positive attitude for both of us should carry us a long way. I am going to work really hard with him this year to be confident in what he's doing, so he can succeed. He is so excited to start school. School supplies have been bought and he seems to have gone with a red & black theme for folders, ruler, & headphones. He was a very enthusiastic school supply shopper this year!

While I was able to utilize online registration for Kyle (best thing EVER), I still have to register David in person since he goes to school out of district. I do that next week. In our district and also the district he attends in the town over from us.  He will be returning to the same class he's had for the past 5 years. Still at the Jr High level. The absolute right place for him.

But.......It's hard.  I was crying the other night thinking about it.  He should be a freshman in high school this year. Starting driver's ed. Thinking about homecoming. But he's not.  I've watched several of my friends talk about registering their freshman kiddos this year.  And it's so exciting for them.  I am truly excited for them. Especially to watch the girl that has watched Kyle for me a little the past two summers start high school. She is a month younger than David. And a great girl.

While I'm super excited for all of my friends' kids, I will always grieve the child that I dreamed of when I got pregnant with David. These big milestones, such as starting high school, always hit me hard. And even though David will start high school next year (I am TERRIFIED!), it won't be on the same level as your normal freshman year.

And while I may not have gotten the David from my dreams, I got this:

And this:

And this:







And I realize he is my dream. I just didn't know it. And he is exactly where he needs to be. And exactly who he needs to be. My real life hero.

Summer

Summer is in full swing around here. It's finally hot out. And I won't complain after the winter of hibernation here in central IL.

Both of the boys have settled into their summer routines. It took David a little longer establish a new summer schedule, but Kyle jumped right into trying to sleep until 10 am. I don't always let him, but he tries to each morning. I think it took me the longest to get into "summer mommy mode". But after almost leaving for work once without David, and not having lunch food for Kyle twice, I think I've finally got it down.

Of course keeping them busy during summer sometimes proves to be challenging. They come to work with me the days Michael is at work. Kyle normally brings along a book and at least one electronic device. David is either super cranky at the office with me, scooting all over the office floor, or like today-fast asleep. Because Mommy's work is boring. They normally last about 3-4 hours and do pretty well.

At home, I have figured out to keeping them happy equals giving them my time. David is usually pretty self-sufficient while playing in his room. He has his baskets of toys that he dumps out multiple times a day and I pick up multiple times a day. But self-sufficient and happy are different for him. I noticed when I'm in his room for him, smiles take over his face, and he truly loves just having some company in there with him. I'm so lucky he's so easy to please.

Then there's Kyle......LOL. Keeping him busy and happy during the day is proving to be much more difficult. He needs to be busy ALL of the time. I cannot give him my time 24 hours a day. I have laundry, dishes, and work. I know that he is 8, and should be figuring out how to fill his time-which he can do most of the time. But it is not always a choice that I think he needs to be doing. Television and video games should only make up a small part of the summer days. He needs help with figuring out other things. To him, my time not only equates to one on one time with him. Sometimes giving him my time really means planning or helping him choose activities to do on his own. Because as much as I want to give my all to him, I have his brother to tend to, a dog to tend to, a house to tend to, and work to tend to.  Sometimes I feel guilty because I know he doesn't have a typical sibling to play with or fight with (second part is totally ok with me!) So planning a play date or an activity for him helps him fill his time.

 

 

 

 

Time is one of the greatest gifts we've been given. Choose to what you do with your off-time wisely. It's what our kids are going to remember most.

 

Sorry

Today I was making small talk with a repair man at work. He had been there before when I've had the boys at work with me and was asking me a little about them. When I told him a little more about David, he replied with "I'm so sorry."  I replied back with "Please don't be sorry for us."

I truly don't want people to feel sorry for us.  While I didn't ask for a special needs child, this child was chosen for Michael & I to raise and love. I am absolutely NOT sorry that we had him at all. When I was pregnant with David, I had so many dreams. Those dreams didn't come true, but I have so many other dreams now.  Dreams of acceptance. Dreams of awareness. Dreams of loving all needs.

Occasionally I feel sorry for the things that we can't do. I feel badly for Kyle because there are things that we have had to skip out on because of accessibility issues. Or David having a bad day.  I wish I could change the way I feel, but I'm human and go through human emotions just like everyone else. And while I feel sorry for certain things, I do not feel sorry for who we are. Because we are us.

 

 I am lucky enough to be able to love my special needs child along with a much more typically developing child with his own struggles with ADHD.  Some days are really tough. Most days are really good. And some days are just in between. For both the boys.

The journey we're on has so many days that are unpredicted still. I can't wait to see what God has in store for us next.

You don't have to feel sorry for us. But I will always accept & appreciate prayers for us & these two kids.