When Will This Ride End?

Seeing these people stuck upside down on this roller coaster recently is how I have felt this past week. It is bad enough to get stuck on a ride for 30 minutes, but to be upside down???? They were rescued in 30 minutes.

MM has had a scratch on her ankle that didn't heal. It has gotten really nasty looking and the doc just wants to continue to watch it. In addition, she has had elevated glucose levels. They had to take several tubes of blood this week to check her glucose as well as looking for something autoimmune. They can't figure out why she isn't healing well. It is very worrisome. Did I mention her ear tubes aren't working anymore? They appear to be dislodged or have fallen out altogether. Add going back to the ENT doc to the list of things to do.

We also saw the eye doc this week. She more than likely needs surgery, but we are going to try one last ditch effort for 10 weeks. We are now going to be adding bifocals to her glasses and see if it helps her crossing. I am trying to hold out on surgery as long as possible without causing her any danger. I just hate putting her under more anesthesia.

We also saw a new PT this week. I think I am going to love her. She seemed to be on top of things. She thinks we need new DAFOs (braces) that are taller since she has had quite the growth spurt recently. She was afraid to tell us where she is gross motor wise- she didn't have to tell me, I knew. Around the 24 month level- no big surprise to me. Yes, she is 50 months old- (hee hee 4 years 2 months), so she is far behind. AND the school says she only needs PT 1x/month for 30 minutes... WHATEVER!

It has been so hectic & busy... Throw working 4 12 hours shifts in the last 6 days into the mix & I am exhausted!

The constant appointments, the ups & downs of having a child with medical issues feels like a roller coaster. When you have a time where you don't seem to have much good news is just like being stuck on the ride. When it keeps getting worse, it is like being stuck & hanging upside down. Only thing is, when you are on this ride, there isn't anyone coming to rescue you. You have to wait it out, fix it yourself, or hope the ride gets going again.

Straight to the Heart

One of the blogs I frequent wrote something the other day & I can't get it out of my head.

The process of making peace with his disability, was no clear-cut step-by-step denial-anger-bargaining-sadness-acceptance a-la Elizabeth Kubler Ross, but rather intense negative emotions separated by periods of equally intense joy and peace and love and contentment.


I have gone back to read this over & over. It seems to ring true for me. Even in counseling, I can't seem to get through the whole grieving process. Why? I think the reason is I am just now, even after 4 years, starting to really go through the process. The first few years were very intense, emotionally draining, hectic & scarry. I never really had time to think about what was going on. I was running from appointment to appointment trying to get her everything she needed. We still run alot, but she goes to school all morning. I now have time to breath & think.

Breathing = Good Thinking = Bad


My heart is starting to accept that she has some life long disabilities. Will she EVER be typical? No. Can I accept that? No. I still have so many negative emotions about the whole situation we have been dealt. I know all the things about the trip to Holland & God giving special children to special moms. Only problem is, a lot of the time, I don't feel so "special". I feel angry. I feel sad. I feel robbed. I feel cheated. I often feel "why me?".

BUT

Then there are the days when I feel like my heart is going to explode with pride. I don't think I could ever love a human being more than I love her. She makes my eyes well with happy tears when she jumps across the couch. She fills my heart with joy when she actually looks at me & says "Love you, Mama". On days when she now asks "Up- Mama carry you", I feel contentment. I know so many other Moms will never get the joy in celebrating each & every little thing in life. Other Moms will not ever get to see their little ones struggle from the day they were born and keep struggling every day to do all the "typical" things. In seeing this, it gives you the strength, courage & determination to go on & keep fighting to make her be the BEST she can BE. It is in this that I am starting to find my peace.

Thank you, Nelba, for your beautiful words. In your grief, I am finding more strength than you will ever know.