Lets Be Honest

The people that love us the most are supposed to be brutally honest with us at times. Those that truly know our real selves and see our strengths and weaknesses, love us enough to call us out on our crap, at least they should. Well I’m lucky enough to have my sister and my bestie Taryn to do just that. And they sometimes call me out on something that comes second nature to me. I like to think that I just have a natural tendency to put a positive spin on things. I’m uber optimistic, a glass is more then half full kind of gal. But those two will often read a blog post and maybe roll their eyes, out of pure love and concern for me of course. I get a whole lot of “you make it look and/or sound too easy” and “you don’t really let people know how hard it really is.” And then I swear to them all day that I don’t do that on purpose at all! Lets be honest, it is just the way the Lord made me. 

But then there are days like today, where I am tired, vulnerable and feel like whining. So let’s give my sister and bestie a blog post they can smile at, shall we? 

This! Is! So! Hard!

Like REALLY, really hard! 

I’m talkin about this single mommin thing of a special needs child AND her sister. That is the thing that is particularly hard today. And it’s SO hard! Do you like that Sa and Taryn? 

Riley has a little cold and her asthma started to act up last night. I did my regular routine and completely freaked her out with her steroid and rescue inhalers before bed. She was exhausted after the crying over that and quick to fall asleep by 7:30. And that’s when I cross my fingers, toes and eyelashes that she sleeps all night long. But I must have given her too many steroid puffs, gosh darn it, and it backfired big time. By 10:30 she was up and ready to party. After some discussion, Nana was SO sweet and a HUGE blessing to keep her until 2am so I could get some sleep. Then from 2 to 5am Riley and I were back and forth in the recliner, in front of the tv, in the recliner, on the floor, in the high chair, and in the recliner. I tried everything I could including begging and a few tears to get her to sleep with no success. At 4 am the girl devoured almost 18 silver dollar pancakes like a grown man! She just kept puttin them away and asking for more as I could barely keep my eyes open. I finally rocked her to sleep like a baby at 5am. That gave me almost 2 hours of sleep before I woke Keagan up who was snoring quietly on the couch. 

I am a girl who needs a good amount of sleep to not be a total beast, so I knew today was going to be rough, especially with what we had on the calendar. On this crazy sleep deprived day we did 4 doctors appointments, 3 x-rays, 2 trips to the pharmacy and 2 flu shots. That leaves for one tired momma even if I was working on a full nights sleep. 

Riley had her first visit with the Endocrinology clinic at TCH west campus today. I just felt like we didn’t already see enough specialists at 11 so why not add one more? But really it was because of my huge concern over Riley’s arm pit hair growth and occasional body odor. That is unusual considering she is extremely small and only 8. Her new doctor and I talked about the possibility that Riley is beginning premature adrenal puberty but it will require more testing of course. It has possibly been spurred on by all the medication Riley has taken her entire life. If that is the case, which it is likely to be, then it will need to be addressed as it could have implications on growth and other things. I’m really not sure how many more diagnoses or challenges Riley and I can face. 23 sounds like more then enough to me already! 

After that draining appointment, we were sent to radiology to wait to get X-rays of her hands. Apparently the bones in the left hand can reveal a lot of information about the status and “age” of your bones. Who knew? I am really hoping Rileys bones don’t reveal that they are aging too quickly. At that appointment I was absolutely amazed and saddened at the same time when the X-ray tech called us back. Riley walked right up to him and held out her ID bracelet that she had been given by the front desk so he could confirm her name and birth date like they do at every single TCH appointment or procedure. He immediately looked at me with surprise and said “she must be a pro at this!” I replied with “she has done this a couple hundred times.” Part of me smiles because my baby is so stinkin smart and part of my heart breaks because my baby has been thru SO much for that to be second nature to her. An 8 year old shouldn’t know she needs to do that! She just shouldn’t. 

We worked it out but that left hand with its clench and twist of cerebral palsy was tough to X-ray. And then after thankfully a relaxing lunch Riley and I headed to Dr Reed’s to check out her cold, asthma and get a flu shot. Man we love that Dr Reed! So why not pick up Keagan and bring her back to get her flu shot, which she was very unhappy about but didn’t really fight me on thankfully as I didn’t have the energy to argue. I am so happy to report that both girls are SO brave and didn’t even cry for their shots! What rockstars! Then after a second trip to the pharmacy for the day, I was the one who wanted to cry. But there was still homework to do, laundry to fold, dishes to do, dinner to feed Riley (so thankful Todd cooked it) and little people to get ready for bed. Now I am physically and emotionally spent and want to sleep for days! 

Riley with the hand sewn pony a volunteer gave her in radiology today.

The goods from the pharmacy today. It takes a lot to keep all the meds straight twice a day!

A sample of what my sweet girl takes twice a day wether she wants to or not, wether she is feeling cooperative or not. This does not include any meds to address if she is sick.

Lets be honest, although the coordinating, scheduling, driving, explaining, directing, questioning, advocating, complying, and understanding part of being a special needs Mom is ABSOLUTELY exhausting. It’s not even close to the hardest part. The hardest part is the worry, the wonder, the what if’s, the what nots. It’s the ok now what’s, the consoling of tears, the decision making and the I have to put my baby, the most precious thing on earth thru SO much! I can’t do it for her, I can’t fix it, I can’t take it away. No matter how hard I try, and I do try! And it is doing it all alone. Yes I have a wonderful village who loves me and loves my babies. But I still do this completely alone. And again I say, it is SO hard! So, so hard. 

But then at the end of the night, as I’m almost in tears because Riley is in full tantrum tears because I don’t want her to wear her Belle costume to bed as it will wake her up, this happens. 

Keagan scoops up Riley and makes her oh so happy as they watch the movie together. And I am reminded just how incredibly blessed the three of us are. And we read our scriptures and feel the peace the Spirit brings. And I say my prayers and am totally reminded that we are NEVER alone and can face anything with the help of our Heavenly Father! So I can do this! We can do this together! I just know it! But we need a little sleep first.

And now I am back to being positive.  Who else saw that coming? I bet Sa and Taryn did! I really just want to wrap this up and finish this awful day so I can go to bed! But I can’t do that without looking on the bright side I guess. Lets be honest, when you see this picture can you blame me?!