I had the best of intentions when I started the NaBloPoMo Challenge, but I’ll be honest and just say that life has taken over and it just hasn’t happened for me this time.
I thought that November was going to be a pretty relaxing month for us, complete with a trip home to visit family. Nothing much planned, and plenty of time to clean house, organize, blog etc.
Apparently, God had other plans and I forgot to consult Him before assuming all would be calm this month!
The last few weeks have been a whirlwind of doctors appointments and long hours of medical research.
I’ve made attempts at organizing the house and getting things cleaned and ready for our trip but there have been obstacles there too, that I’ll save for another post!
Ok and lots of teary silent and not so silent prayers from my mommy heart to God to just help me find SOMETHING to make my sweet daughter feel better. It has been a long and challenging 11 months dealing with the constant issues that come along with this mystery illness she has been fighting. On top of that, her hematologist recently discovered that she may have been misdiagnosed with the blood disorder we have been treating since she was 3 months old (ITP - immune thrombocytopenic purpura). Instead, he thinks that there may be something genetic that is not typically screened for at birth. As a result of not being treated, it may be causing lasting complications.
My little Monkey and I (and Buzz Lightyear) at the pediatric hematology clinic in San Francisco.
We are so thankful for these doctors!
On top of sending my husband and I for genetic testing to see if our blood mismatches or if either one of us are a carrier of this other genetic blood disorder, it was recommended that I see a hematologist to have a full work up done to finally get to the bottom of my own bleeding disorder. I have known for quite some time that I have one, but I haven’t known an exact name of what it is because it never affected me in a large enough way for a doctor to deem it necessary to know the specifics — until now. Which is great that they want to know, because it no doubt is better to know with certainty than to just have guesses. Knowledge is power. The process of gathering the knowledge is just long and tedious at times. Referrals. Driving great distances to labs. Blood draws. Appointments. Etc. The never ending cycle that is necessary but often exhausting.
A couple nights ago, I was up searching medical databases and articles in desperation. After a day of exhausting and messy diaper changes, and watching my sweet girl cry because her poor bum is so raw and sore from the bowels she can’t control, I was just sitting in this very spot crying out to God to lead me to something, anything even, that might help her. I am not 100% sure that I have found an answer but I did find some encouraging research. After I read the research (and more and more research on the same thing), I decided to see if there were any stores near to us that sold the product or if my only option was to order online and wait for shipment.
Now, let me just say that we live in the middle of nowhere. We are about 30 minutes from Walmart. 45 minutes from a decent sized city where we do all our shopping. Its 10 minutes to Walgreens and not only do they no longer take our military insurance, but they are also not open 24 hours. The pharmacy we do use is a good 20 minutes one way and is also not open 24 hours. So, when I searched for this medication I was SHOCKED to see that it was sold at OUR Walgreens. OUR pharmacy. AND the closest Walmart. It took EVERYTHING in me to not jump in the car (at nearly midnight!) and get to Walmart to get the medicine, come back and wake up my little girl and give it to her. My husband talked some sense into me and told me to wait.
I tried to sleep that night… and when I wasn’t sleeping, I was praying! I was praying HARD that this might be something that resolves the symptoms while we search for the underlying cause. Yesterday, we went straight out to Walgreens and picked it up. Came home and got 2 doses in her before bedtime. It’s too early to tell for certain, but I’ve already seen a change. A HUGE change. 24 hours into a new medication and I have hope that the answer to resolving the most bothersome symptoms MIGHT be simple! It’s a fantastic feeling!
We still have such a long journey in front of us, and its an journey that we don’t know when we will find closure to. The last 11 months have been long, painful and exhausting…. but she’s worth it.
She’s worth every long drive. Every tear shed. Every doctor visit and hospital stay. She’s worth so much more than everything I have to give of myself for her.
My little girl is just simply amazing and she is truly my inspiration and the reason I can keep going on this journey every single day, no matter how long it takes.
I am so blessed to have her, and I knew she was the blessing I’d been praying for from the moment I knew of her existence in my womb!
Mommy, Monkey and Sarge – taking a family moment during her 2nd Birthday Party.
We celebrated on 20 October, 2012 after a week stay in San Francisco for treatment at UCSF Children’s Hospital. So thankful she was feeling well on this day!
Speaking of my little Monkey, I hear her stirring from her nap which means it’s time for our afternoon wake up snuggle!
I’ll leave you with this — which I have been repeating in my head for weeks:
“For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen.” – Jeremiah 29:11-12
His plans are so much greater than ours. I would have loved to have the time to participate in NaBloMoPo, but His plans for me are different. I would love to have the time to attend every military event and social, but His plans for me are different.
I’m still learning, so sometimes I stomp my feet and throw a little tantrum… but I’m starting to be ok with knowing that my life is just different than I expected right now, and that’s ok. His plans are greater, and HE is in control – not me. There’s a strange comfort in knowing that, especially when life can seem so much like a crazy whirlwind. I’m choosing to place more trust in Him, choose joy more often, and just rest in the peace that we’ll come out on the other side of this whirlwind journey eventually – stronger, more knowledgable and more faithful because of it. That’s a blessing I’ll choose to be ok with! He still hears my prayers, even the silent ones I just pray in my heart. In HIS timing and not my own, He will bless me by answering these prayers – even if they are not quite how I picture the answers to come.