View Full Version : When things are hard

Kellie in NE
10-25-2011, 11:59 AM
This probably belongs in the Prayer Room but I am posting here because I am sure all of you have felt this way one time or another.

My 4 year old daughter is nonverbal and has both a genetic disorder and a seizure disorder. She also has some sensory issues and can quickly get overstimulated. I can handle all of this-the problem is-she does not sleep. She has too much seizure activity happening in her brain at night to allow her to settle down-the doctors are really trying to find the right balance in her medications. I am amazed how much energy she has with so little sleep!

I am simply exhausted. I am really struggling right now and I think a lot of it has to do with the coming Holiday season and her birthday. My daughter can not handle the family gatherings, the noise, or even the Christmas tree (last year she would take all of the ornaments off the tree every night when she woke up). We have very little family support-and Respite care in our area is pretty costly right now as we continue with her medical bills.

I am sorry-this is getting long--
I love her. I love God's calling for my life but sometimes that calling is just hard. I just needed to share with others that I know will understand.

Ginger Lynn
10-25-2011, 12:21 PM
:group: I have a special needs child too that doesn't sleep in the winter months, part of his condition. I just want to send a hug and tell you what has helped me the most when I get up countless times in the night to go comfort him. On my way to his room, I pray for HIM! Now, this hasn't helped me get anymore sleep but it has helped my attitude towards the lack of sleep that I get and that seems to help my sleepy attitude the following day. :group: again and HTH.

Rachel Jane
10-25-2011, 12:55 PM

Sue C
10-25-2011, 01:01 PM
:group: I'm praying for you Kellie. I do know how you feel and the exhaustion. Praying you wil receive God's strength to get you through each minute. :group:

Hollie in SC
10-25-2011, 03:50 PM
:group: Praying for you all to have rest.:group:

10-25-2011, 07:40 PM
I'm sorry Kellie, I understand... completely! :group: My guy rarely sleeps through the night either,and he is high energy all the time !!!

I often feel I can't complain or vent to people since we adopted him and I feel like people will say(or are thinking) "you asked for this"...:unsure: that's another reason I come here for support so often,too.
Praying for you Kellie, I know it can be hard!:group:

10-27-2011, 03:54 PM
:group: I think this is a great place to share. I totally get it too. I can say that for us, things have changed with age. Seizures change with age too (from what the neuro has explained.) I know that several years ago, my daughter was sitting on the floor daily banging her head against the wall (due to seizure activity.) I was pregnant and had two preschoolers. It was such a difficult and lonely time for us. The other hard thing about it is that like you, I was so, so tired. Yet, I completely had to keep pressing on to find answers for our daughter. I was asking questions, praying, doing a bit of my own research, all while being tired. Moms don't think straight when they're tired. You love your child, but....you want them to be happy. You want to enjoy your child!

Keep praying! I can see how the Lord has answered some specific prayers. It wasn't always immediate and when I wanted them. But, the answers have come! Keep in His Word. Isaiah 40 has always been key for me.

Our daughter still has struggles and always will and I don't even try to imagine the new ones that might pop up. No way...enjoying now! But, I also feel the same in that I have to be careful in who I share our struggles with.

As far as the holidays. I know this can be really emotional and hard.:group: I've had years that I've dreaded family functions. I don't know what your specifics are. But, Kellie...if you need a friend, I am here! Honestly...our daughter is 11 and has a genetic disorder and a seizure disorder. I know I haven't walked specifically in your shoes, but I love to encourage other moms. God comforts us to comfort others. Maybe we can help you brainstorm to help the holidays go more smoothly? Please know you aren't alone.

Kellie in NE
10-27-2011, 09:04 PM
Thank you ladies for your prayers and words of encouragement. I am so thankful for these boards as a safe place to share with others that understand.

It has just been a couple of hard years for us-her seizures have been difficult to control despite many different medications and every time we head to the doctor we discover something new that leads us down a new path. I am thankful for God's timing as all of these diagnoses would have been more difficult if they had come all at once!

The Holidays are difficult basically because of the expectations of our family. I do not believe they are ready to accept where we are at. They are waiting for that day when she will talk and be just like every one else. I went through a grieving period myself and I know now that God made her just the way she is-He made her perfect. He is in control of her life and I know He has a wonderful plan for it.

The hardest part of all of this is the lack of sleep and balancing her needs with the needs of the rest of the family. Some days are just hard (I also have a 2 year old-need I say more)

I am keeping the faith. I am taking it one day at a time and trying to enjoy the little things. Thank you again for your prayers and words of encouragement. :group:

Ginger Lynn
10-27-2011, 09:08 PM
I went through a grieving period myself and I know now that God made her just the way she is-He made her perfect. He is in control of her life and I know He has a wonderful plan for it.

Knowing this makes things so much better! Thanks for the reminder.

10-28-2011, 03:20 PM

We've been thru that with family members too. Mainly my dh's side, whom we are the closest to. They share our faith and even have extensive experience in working with the disabled community. Years of experience. But, when it came (and comes...still!) to their own grand-daughter...I guess they've grieved too. But, it's been really hard for us and me especially at times, because I NEED cheerleaders, NOT doubters and nay-sayers. I am not close to my side of the family. I do have to say that the holidays have gotten easier over the years. But, when you have to deal with it when things are really hard...wow!:eek:

I'll be praying for you Kellie:group: You are a great mom and your daughter is precious!:kiss: Whatever happens during the holidays, don't ever forget to at least try to make your own family times special, even amidst the difficulties. We were left out of a family Thanksgiving one year because the family members who were hosting had sick kids. So, instead of rescheduling or moving it elsewhere...they still had it and we stayed home (while grandma and grandpa went to their home.) Isn't that insane? Well, it seems insane to me, because we have stayed home countless times due to sick kids and missed out on things. My kids were so bummed and so were we. So, though it was cold, I took some of the kids to the park and we made fun turkey cookies. Our special needs daughter was having a hard time that day too, but my kids have the best memories :) And my dh and I took matters into our own hands and a couple of weeks later, asked my in-laws if we could come to their home and have a Thanksgiving with them. We did:D

Jo in PRC
10-28-2011, 03:32 PM
Lifting you up right now. When things are especially hard for us, it helps me to focus on the moment...I literally have to quiet my mind and concentrate on the good stuff and what I love about my daughter. I cannot control what my extended family thinks or does, so I've chosen to not spend any time thinking about that (and sometimes I have remind myself that I'm starting fret and force myself to step back and think about something else). There are a lot of reasons holidays are hard for kids with special needs - and the people who love them - so giving yourself permission to grieve that and then moving your thoughts to something else might help. On a side note...you have a two year old! You are a strong powerful woman and excellent mom. It will get easier.:group: