Harper's mama. Married to a Marine🇺🇸. Daughter to a Loving God. God is bigger🖤 I am not the victim. I am the lighthouse 🖤
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"You carry me through, on your shoulders black and blue."🖤 Sometimes when the Church is really quiet and no one is around...Dorian will drive us right to the front and we get to go in. Harper and I get to Pray directly at the foot of the cross. We get to see and feel His Power and Beauty. Thank You Lord for these moments. -this was taken the day we had to have all the blood work done on our way home from the hospital. 🖤.
My brother, Tommy came home for a few days and helped my Dad with the roof and walls....so thankful. Going to miss him when he has to go back to Florida. Harper loves him so much. We are so happy to see the joy on her face when she is with him. We love you Uncle Tommy.
I read the other day what Dr. Phil said on his show. I do not watch him, and honestly do not know much about his talk show. I did however feel a sick feeling in my gut and a pressure to write something to his show after the 100 of 100 relationships will not last if the lover is the caregiver in a disabled relationship. Why would anyone ever say this? Where is your proof? Why would you whisper that evil into anyone's ear. Especially on such a big platform? Do you have any idea how many couples are struggling and literally clinging to Faith and Hope and Love and trying to find the one positive thing in each day to get them through? Now, throw a "disabled" person in the mix...its hard enough. My story is in Bio at top because to type it out is very hard for me to relive. However, there are so many of us that already feel like a burden on the really bad days. Some days it takes my husband who is my full time caregiver, my home nurse, and others to help me. I used to run 6 miles a day before becoming sick. I would handle everything. My husband was a Marine and Federal Law Enforcement. Now for nearly 5 years..it has been wheelchairs, hospitals, never going in public because of my rare disease, and I homeschool my little 5 yr old, from bed, hooked up to my IV pole doing treatments. My husband plays with her and takes her everywhere. My parent's help with her and we all honestly try our best. None of us asked for this situation. I physically can not do much for my husband. He is literally my arms and legs some days. He is always there for me. He is the best father, husband and man, God could have sent me. We said vows...we meant them. I know the toll the caregiver takes. It pains me and saddens me and we try our best to create balance for him, and I feel selfish some days and hurt that life is this way and he is carrying the weight of the world on his shoulders. But, when he is masked up and hooking me up to an IV, or when I catch his eyes across the hospital room; Calm and steady, we love each other. *READ MORE BELOW IN COMMENTS* #100outof100
Safe Addition and my soul mate!❤ We will try to post another picture of the progress today. The MGO walls are up.
Blessed to wake up like this. Thank You God for a new day. 🖤 I love you Harper.
Denise....A woman that I have never spoken to personally....she took the time and the Prayer and the effort to make myself and Harper this beautiful Prayer shawl and scarf. She prayed while knitting them and honestly these will be with us always. I am beyond grateful. I am crying because the amount of love and compassion that went into this has me feeling a little more Hopeful. She sent these to us a while ago and we had been so busy and it was so cold out...Dorian has to open up everything outside and let it air out, just because I am so sensitive to everything, everywhere. He opened them today and he sent me these pictures....we love you Denise. These are perfect and beautiful and just right for Harper and I. I can not wait to wear this every day...We love your heart, we love your Faith and we are so grateful God is showing Himself through you. I have always wanted a Prayer shawl and I will cherish this always. I will be sure to explain the power of this to Harper as well. Thank you so much. If my writing isn't very good today, I apologize...its been a heck of a couple of weeks, months, years LOL...but thank you, we love you and are forever grateful. God Bless you. PS. They also sent Dorian a gift card which was so thoughtful. ❤ and money donations, that Dorian just told me about....we are grateful. I'm sorry we are so behind with opening the mail and thanking you.
Amen!!!!🤗❤ Trying to get these nutrients in my body is honestly brutal. Harper and I say a Prayer for God to Bless each one before I take it. So thankful for another day...even if it is pretty scary...I was able to do infusions and snuggle Harper while she watched a movie. We have her specialist appt coming up on the 13th and then one GI appt on the 14th. Praying things start to turn for the better, but also Praying to be grateful in these moments and breathe through the hard times....
❤ so thankful. I have been very, very sick today, but this is a bit of sunshine to my soul. And Harper. LOL, she always is. ❤ and Dorian, he's had to do IVs on mummy wrap my arm now 3 times because the shower is only place I can try to sit up where it's not too painful. I can not wait and am so thankful for this safe haven. Lord, please always give me the heart to Praise You and be thankful in all circumstances. #healing
Learning this....on so many levels. Lord, please help.
I LOVE YOU ❤ she wanted to sing on Snapchat while I do my IVs. So so so sweet! Thank You Jesus. Ps. These filters are amazing. Haha
The Charity that we thought was going to help with the rest of the house funding, or some small part even sent me a generic message yesterday after waiting on them since September. Yesterday I wrote to them updating them on my daughter's conditions and the next steps with testing and saying how I did not know what we do if we did not get the help we needed. And then they sent me this later on last night. I know it is Pray hardest when hardest to Pray. So....we are! Lord please provide...Harper's Prayer was...I know You will find another way God.🖤 #charity #celiacdisease #mastcellactivationdisorder #mold #lyme #bartonella #godisbigger -Also, this is not a post knocking the Charity at all. I hope they were able to help as many people as they could. I Pray it helps a child or family who really, really needed it and we are thankful. We know if they could help everyone they probably would.
We are still in the process of figuring everything out and next steps with Harper. We have to go to Boston Children's Hospital again for probably a week. I spoke to her GI Dr. today who is wonderful because Dr.Dempsey(God send to us) who is our Dr. had suggested we see him ASAP. She has to have an endoscopy, run a few more tests as we understand it, and meet with a dietitian. She has suspected celiac disease(very high markers) amongst other complex things. Her GI doctor has to be careful with anesthesia because of other things that make everything more complex for her...We will know more as things unravel and we get answers. We are beyond exhausted. Harper is in good Spirits and so so strong and happy and loving...Dorian is outside working on the roof to our safe addition with my dad and cousins and I am inside trying to make all the arrangements with the Hospital and the travelling and lodging(I am too allergic and sick to stay anywhere) while trying to keep Harper happy and worry free.... I am so weak at this point it is hard to travel, but will do it because I know she needs me. We are working with Boston Children's to make this as easy on the family as possible. Harper is our main priority. So we will keep Praying for a path. God, Please keep carrying us. I know our burden is heavy Lord. You are Bigger than all of this. Please, please help us. And thank You for every single day no matter what. We are grateful. In Jesus' name. Amen