Good morning! So, Zach is making me write this post, and believe me I am not near as witty as my better half. How ironic that I wrote a dissertation, but overall, I hate writing. I guess you do things you don’t enjoy just to get through life – like learning how to change a trach and/or learning how to g-tube feed your baby. Anything “medical” is torturous to me, just like writing about our everyday lives. However, I have had two punks from my doctorial cohort hounding me on an updated post about Harper, so here goes…
Harper has good days and bad days just like any of us. However, her good days are probably more like our bad days and her bad days are the days we want to punch someone in the face. Therefore, I find it to be an extremely difficult and painful question when someone asks me, “How’s Harper?” You see, there just isn’t an easy answer to that question. I wish it were easier to explain. I wish life were simpler. I wish, I wish, I wish.
While the bad days outnumber the good days, I will say I had tears of joy about a month ago. Harper finally received her Passy-Muir, which is a speaking valve for those with a tracheostomy. For the first time in way too long, I was able to hear my baby cry and coo. Yes, I know this seems irrelevant to those of you who have a 19-month-old baby who talks non-stop, but this is not irrelevant for us or for Harper. I think she, too, was missing hearing herself, which created added frustration on her end. She can not wear the Passy-Muir around the clock, but when she can wear it and “communicate,” it is a blessing.
Harp has also had some non-stop respiratory issues, and I feel as though she in on a non-stop ferris wheel of antibiotics. It is difficult to figure out what is wrong and/or hurting when you have a non-verbal child. In addition, due to her health condition, I feel as though we are constantly at the mercy of the doctors. To me, it is just easier to advocate for an abled body, healthy child who can tell you what is hurting or why they aren’t feeling well.
Lastly, Harp bites herself when she gets stressed or irritable. She bites and grinds her teeth. For those of you that follow Zach’s crazy Facebook posts, you already know that she has had her second tooth extracted. She has grinded her teeth so much that she has knocked another one on the bottom loose, to the point the doctors were scared she might swallow it. Therefore, extraction was the only answer. Her teeth and her mouth are painful to look at, and we feel so helpless when she is biting her lips off – yet we can’t get her to release. And, we arn’t getting any answers on what to do to help her.
One the flip side, we do have a praise for an AWESOME full-time nurse for Harper Monday – Thursday. She is more than a blessing; she is a God-send. She loves Harp like her own, and she reminds me everyday that God has a purpose for Harper’s life. In addition, while I was moping around this week over all the picture-perfect depressing Christmas Cards we’ve received (sorry in advance if you sent us one this year, but I am a Scrooge), our Nurse reminded me that our family is perfect. It is created in God’s image just as it was meant to be. While this hurts sometimes thinking about Harp, I know she is right, and sometimes I need a good kick-in-the-butt to remind of this.
Other than the above, we are all just doing life as best we can. This past week marked our boys 1-year adoption day – their “Gotcha Day.” They are a true handful, yet a joyous handful. They make me laugh and cry every day. LOL!
To all of those who have kept us with our messy lives, prayers and blessing to you! Please rest this holiday season. I truly know, that regardless of the hand we were dealt, I am thankful and I know that He is sovereign.
*Harp’s Oxygen Levels to stay where they need to be. They have been low lately and needing oxygen lines during the night.
*Harp’s secretions to be more manageable.
*Harp to quit the biting and grinding. Her poor lips and tongue just can’t get healed. We’ve woken up so many mornings having to clean blood off her face, sheets and even the wall where she’s coughed it out the trach.
*Sleep for us all. We really don’t get more than a handful of decent hours a night.
*For me to let go of the insurmountable guilt when it comes to Harps situation– the would have, should have, could have, and what if’s. It’s heart wrenching to see my baby girl suffer every day and me not wonder…
*For us to be able to sell our home and build one that is handicap assessable to meet our new needs.
*For our other kids to not feel neglected or like Harps need trump their needs.