Thursday, February 18, 2010


I realize that I had my pity party just a short time ago.....but today has brought about additional emotions, so I've decided to have another one!

Have you ever gotten a phone call from your child's school? Maybe your child was not working to their potential.....or maybe they did something uncalled for at school.....or maybe they did something really nice and the teacher wanted to share that with you.....or maybe they just weren't feeling well and needed to be picked up from school. I've gotten all of these types of phone calls from school. This is normal. I can handle normal...well...most of the time.

Well, today I got a phone call from school that left me wanting to cry.

I was having a decent day. I planned to get a lot done. Life was good!

Then, I picked up the phone.

School Nurse: "Hi, Is this Gavin's Mom?"

Me: "Yes, it is." (Not yet worried.)

School Nurse: "This is the nurse at school. I wanted to let you know that Gavin had some sort of seizure on the bus. The attendant caring for him said that he was doing some spastic movements with his arms and kind of twitching and he had his eyes closed."

Me: "It kind of sounds like he had some clonus or spasm to me." (Still not worried.)

School Nurse: "Well, then he became unresponsive and went limp."

My heart sunk at this moment and I knew that he must have had some type of seizure!

Me: "He went limp?! Yes, that definitely sounds like a seizure or something. He had been sick and he usually has them when he's getting sick, is sick or is getting over a sickness."

School Nurse: "The bus attendant called me and let me know what had happened. I was waiting for him at the bus and I checked his pulse, respirations and oxygen saturations. He is doing fine now and even smiling, but I thought that you should know. Do you want to come pick him up or are you fine with him staying at school."

Me: "I'm fine with having him stay at school. Thanks for taking care of him and for calling me."

UGH!!!!! How I long for NORMAL calls from school!

This is why I hate sending Gavin to school! I'm not there to see what has happened. Now, I'm wondering how bad was this seizure? Is this like the ones that he normally has? Should I be worried? Was this really a seizure or did he just have a spasm and then go to sleep? He WAS very tired when I put him on the bus and he hadn't had his catnap for the day. Did he just zone out? So many questions and not enough answers! I feel sick about this and I don't know what to think!


Normal is gone forever.

I wish that I wasn't always waiting for the next thing to come up with Gavin. I wish that I could become comfortable with the future of Gavin and our family! I try to, but then I think; "Things are going great for Gavin. I wonder when he will get sick again and end up in the hospital? I wonder when his broken heart is going to give out and need to be repaired again, at a hospital that is 2 hours away from our house?! I wonder when his pacemaker battery is going to die and need to be replaced, with surgery, at a hospital that is 2 hours from our house?! I wonder if his seizures will stay under control?" And, on and on!

I have a deep faith in God and I know that our future is already written, but being human, I can't help but worry about Gavin and his future!

Oh, how I long for the normal illnesses of most children!

I wish that I enjoyed having Gavin go to school. I wish that I enjoyed those few hours of alone time, to get things done, but I don't! I want my 3 year old home with me! I want to be there if he has a seizure or something else happens! I don't want to get a phone call from school to learn about it!

I wish that Gavin had the normal, one or two doctors, like our other children do. But, Gavin has to have 10 doctors! I long for the days when I only had to take my child to the doctor for a check-up or a simple illness!

I hate that the pharmacy down the street knows my voice over the phone and knows my name when I walk in the door! I hate that I have to call and order food and supplies once a month from a home health supply company for my child! I wish that I could just make him meals and snacks everyday!

I hate that I can't just take him out to the store easily. I have to plan out my day around when his feeding pump is running or when he is in school. I really wish that I could just put my 3 year old into the car, drive to the store and have him walk into the store and sit in the front of the cart and ask me for snacks as we stroll through the store!

I wish that going out with my husband were easier and that getting a babysitter wasn't so difficult! We have wonderful support from our parents and they are eager to watch our children, but it's difficult to get away for long because Gavin has meds to take, treatments to do or a feeding pump to be turned on. Joel and I used to get away for a weekend, alone, once a year.....that hasn't happened since before Gavin came into our lives! There have been offers to watch him, but I just don't feel comfortable leaving him when so much can go wrong! I long for the days that I could just drop our boys off, feel at peace, and get away for some time alone!

I hate that I am complaining here! I hate that I have a difficult time just being content with my life. Lately, I wake up and actually say the word, "Content" to myself, just to remind myself that I should focus on this for the day! I should be content with my life! It's a WHOLE LOT better than a lot of people's lives, but it is SO DIFFICULT to just be content when you have a child that has gone through so much and who's future is more uncertain than most people's future!

God knows Gavin's future, but I don't, and it's difficult not knowing what is around the bend.

It's probably a good thing that I don't know, right?

I am confident that God will give me the strength to endure whatever is to come. I am at peace with this fact. I just wish that I could turn off my mind once in awhile. And, I wish that I didn't have to get phone calls like the one that I got today!

I LOVE Gavin! And, I wouldn't trade having him for the world! I love looking at his sweet little face and I love the joy and peace that he brings to my daily life!

But, I also long for "normal."

Thanks for listening again!

"Now godliness with contentment is great gain. For we brought nothing into this world, and it is certain we can carry nothing out. And having food and clothing, with these we shall be content." 2 Timothy 6:6-8


Laura aka Mama Ham said...

I just found your blog and am falling in love with Gavin! I understand your frustration. My husband and I have not had a night without all of our children since I was pregnant with our 4th who is a special needs child. Big hugs to you....I get it!

Alicia said...

I am so glad you feel comfortable coming here to vent, knowing that we are here to support you. Keep the vents coming and we'll be here to love on you.

I am so sorry Gavin had a seizure today. It has got to be so scary and frustrating for you. I totally understand wanting "normal" back again. And believe me, you wanting normal takes nothing away from your unconditional love for Gavin.

Always here for you, mama. Hugs, prayers, and love.

Derek, Kenzee and Gage said...

I'm so sorry to hear about your hard day. I cannot imagine the feeling of not knowing exactly what happened, or what you need to do, since you weren't able to see what was going on. Oh he is just so handsome. I keep looking at his smile and it melts my heart every single time. What a precious boy. What a lucky boy he is to have a mom like you that knows what is most important. I love that you say "content" to yourself every morning as you wake up, what a great point of view.
((Hugs)) and I hope things are feeling better tomorrow.

Debbie said...

I am sick that you got that call-so sorry...seizures suck...bottom line!

I completely,whole-heartedly get it...your whole post!

It is our "new" normal...but somehow...
It never feels normal and seems like it never will!

That amazing,glowing smile is all I need to see to understand how you make it through these rough days...
He has a glow about him...God I'd pouring His love and grace all around you guys...
Praying for better days and NO seizures or added illness..


Anxious AF said...

Venting is the only way us moms who get it can reach out to each other! We need to vent! We can't pick ourselves up off the floor so easily without the encouragement from each other! I long for normal too, when Alex stands and I see his head sticking up over the table I see a two year old boy, but there are no "momma I want" and "me do it" no running all over the house with a cape flapping behind, no playing with cars on the floor. For a split second I see Alex the two year old boy, then comes the self stim, the nonverble noises, the unsteady gate, I want normal too. I love you friend. In all your unnormalness:)

Amy said...

Oh sweetie, I can't even imagine the mental dance you must do to get through each day with a smile on your face. And you AMAZE ME because, more often than not, you succeed in doing it!! On days like these, though, I'm glad you allow yourself to vent and wallow a bit, to get it out into the atmosphere so it doesn't eat away at you. Ten years ago, you wouldn't have EVER been so comfortable being open about your feelings! Ten years ago, your life was "normal." But were you as happy and enlightened as you are today? I DON'T THINK SO! "Normal" is boring! And while sometimes, boring is a nice reprieve, you are destined to do and be so much more than what 'normal' dictates!

I'm reminded of what Mark said to me on the day Gavin was born. I was sniffling over the scary unknowns of Gavin's fate, and he hugged me and said, "You're family has just been given a 'dare to be great' opportunity." It made me feel proud in that moment, that we (you, mostly!) had been chosen by God to rise up and meet the tough occasion with strength and dignity. I certainly know you've made Him proud... So rant, wallow, cry, worry, but also know that you are FAR GREATER than normal. You don't fit into that role because you are capable of sooooo much more!

I love you, sissy! (((hugs)))

Lacey said...

Once again, we are in the same boat. I don't know why we've never talked on the phone. Email me and I'll give you my number!
Its not that we are complaining when we want normal, its that we would love normal DS stuff. The stuff we go through with our two boys is not typical DS stuff. Most DS kids do walk in front of the cart and want snacks, etc. We'll never have that with our sweet boys. And what makes it worse is that we could have! Someone else hurt our children and now they will suffer for the rest of their lives! That is beyond frustrating! Kiss that cute boy for me and Jax!

Hope said...

You can have as many pity parties as you want! You can vent as much as you want. You deserve it!! I know it's hard, but you are an amazing Mommy and you don't give yourself enough credit.


Kristen's mom said...

You're not complaining at all. Thank you for all your kind words and encouragement. Gavin is adorable.

Annette Gysen said...

I'm so sorry for all of the tough things you have to go through. The worst thing that should happen on a bus is forgetting a backpack or lunchbox. It's good to get it out when you feel overwhelmed and frustrated.

Becky said...

That's what we're here for! We've got your back!!! Complain all you want, you deserve too. But in the end, I'm glad that you DO know how lucky you are to have Gavin and how lucky Gavin is to have YOU. Somehow, that seems to make it all worth it. :) You are doing a great job! Keep it up. We love you.

connie said...

I know. Believe me, I know. I'm praying for you today. I know what Lacey wrote about having had something happen does make it worse for you.

Today I'd gladly settle for last month's "normal," though. thank you for always checking on Mallorie, and for the verses, as those are always so helpful for me.

Michelle said...

All I can say is ditto. Ditto. Would you email me at I know it helps to write things out here, but sometimes you need an ear. I'd like to share my phone number with you, if you interested. Sending you a big hug and prayer. Love, Michelle

Jenkins said...

Oh, I feel you frustrations...
There is so much to parenting a child with all those needs.

I get those same calls from school and same conversations.

It is so difficult not knowing what is round the bend. We feel like we are waiting for the sky to fall again and run around like Chicken Little. Then the next day we start all over.

But then looking at them, loving wonderful.