We have had a pretty busy month. We made a small video sort of showing a recap. Harper had a reaction last night to a gluten free cheese we think. We have never used it before, but our sweet girl was up pretty much all night...we are Praying so hard to get into this home very soon. We know God will provide. Dorian will try to do an update inside the safe space. Alot of good has taken place as well. We will update more on that when we are able. My energy has been pretty low just from the past few weeks. Hard to walk and think sometimes and alot of pain. Praying and thanking God for carrying us. This video recaps pretty much the month of June. We are so grateful for all of the Prayers and everyone reaching out and thinking of us. Once my energy gets back up, we hope to be on here and updating more. I'm sorry we haven't been too good about that lately. My picc line is still in and the nurse comes every other day now to change the dressing and keep an eye on the wound. Dorian and Harper take very, very good care of me. I'm so thankful I was able to sit up with her last night and our specialist got back to me around midnight. We love her. Harper has been resting and playing small games all day and she says she feels "great." She was a little scared and we had to explain why things in her body were doing what they were doing last night. I am truly Praying God gives it all to me. I Pray He protects and strengthens my little girl and my husband. We are still waiting on Boston for the ovarian cyst(endometrioma) and tumor markers. To be honest I still have so much blood work to do and have to contact a few of the doctors, but have not felt well enough and been focusing on trying to be as present as possible for Harper. Sometimes I feel like our souls need a little break. The picc line cultures came back negative. Praise God. So we are just going to Pray and watch the site. Dorian literally takes care of me all day and night. God still provides Joy everyday and we are so thankful we are able to laugh and Pray and Love with our little family. The safe space is coming along. We are so thankful. Windows are in and my dad is out there from sun up to after dark 👇see below pls
Amen! Just got home...Dan is here to help Dad and Dorian with all the HVAC(I hope I'm saying that correctly). Dr. appointment went pretty good. Praising God for that. Going to try to rest a bit and will post later an update if we can. Thank you for all the Prayers. God Bless!❤
*If you are squeamish with gross medical things...do NOT scroll through the pictures* Nurse just left and took more cultures from the site. We are waiting to go to my Primary Care at 2pm. Been a very hard couple of weeks. Harper and Dorian have been right by my side and Jesus is certainly carrying us. This morning we were up at 3am, 6am and 8am finally to stay up and do fluids. I couldn't move very well and felt like my body was going to stop. Sometimes the fatigue is that strong. Dorian hooked up my IV while Harper was asleep next to me. In those moments when my breathing becomes so hard to even draw in a breath...I think of Jesus...I literally try to start naming everything I am grateful for. No matter how small it may seem. I usually try to write it down, but this morning I just lay there and counted my Blessings on my fingers and in my mind. Praise God I was able to. To anyone who needs to hear this..."You're going to be OK." I sat with Dorian this morning and I asked him to just tell me those words. And like always...he rubs my back and he does. Harper had a small stomach ache this morning..she has been feeling pretty good on gluten free, so I'm Praying it was just a one off thing. We are still doing another round of stool tests with her GI Ped. We Pray all comes back healthy and healed. God is so much bigger than anything we face. I Pray He continues to carry us through this next appt. and right home to rest easy and hopefully pain free. Lord, I am so grateful for another day. Please wipe away the fear and let our little family rest so easy in you. Please help us..to let our first instinct be to turn to You and know You already went ahead of us and You Love us. I Pray for all those suffering and I ask that You pull them so close. Please show Your strength in these trials Lord. We Love You God. In Jesus' name I Pray this. Amen! #Godisbigger #piccline #mastcell #Teamneverquit #thankful #Pray
Praising God for these moments. ❤
Hallelujah My soul will sing Hallelujah You are good to me You are faithful, always faithful- Sarah Reeves -Praising You, God. ❤ It has been a pretty tough and a bit of pain and uncomfortable type of day. Then I look at these two. I hear her sweet laugh. Dorian gives me a hug and pulls me in to not hurt any part of my body that is currently hurting....Thank You Lord for my sweet family. Please Bless them always. Thank You for another day to try. You are Faithful, Always Faithful.
Happy Father's Day! We Love you more than we could ever put in to words. You are our protector. Our loyal, strong, steady Love. Thank you Lord for Blessing us with Harper. Thank You Lord for making Dorian a daddy. Thank You for this life we have together. Please continue to keep Dorian strong and healthy and please always guide his heart to You. God Bless You, Dorian. We Love you always...forever and ever. 💕❤🌸🙏🤗😍🧜♀️ Harper and Leah
Amen! Amen! Amen! We Love You Jesus! Praise the Lord for His Love! Praising Him for another day! Praising Him always! Praying to always keep Him at the center of our little family! ❤
I Love you my sweet girl.
Praying, Praising, Praying, Praising. Lord please carry us. Interventional Radiology, Primary Care and then I Pray home to have a wonderful God filled evening full of love for my family and Worshipping Jesus for all He has created in us. Please just carry me a little longer, Lord. Praying for a little more strength and really good news. Still waiting on my blood cultures from last night and tumor markers from the blood work Monday night. God...things seem very, very hard, but I have been close to this before and I have a little girl who I am not going to quit on. So, please Lord...give me strength, show Your strength in my weakness. Revive my body a bit to get through this day and calm my body. Protect my little family. Please.❤ #Teamneverquit
1:30am...still doing more blood cultures and Dr. came in to see me. Harper called crying around midnight so I promised her Dorian would head home for her. He is with her now. The Dr. wants to do more fluids on me bc I'm so tachycardic, but I have autonomic nervous system issues to the tachycardia is like 120s which isn't too bad for my norm at the ER. He is very nice and I am Praying I get home to my loves soon. One of my worst fears is being at the ER alone and not getting back to my loves. What I would give to be laying in bed hugging Harper close. Or, hugging Dorian. Lord, please lead me. Please get me through the night and home and no infection. Good news is he was poking and beating up the site of the picc line and it didn't hurt too bad. Praying for strength and for Dorian and Harper to sleep well. Hopefully I'll be out of this joint by morning❤ I Love You God. EVEN WHEN IT HURTS!
They are sending a Home Nurse out tonight to change my Picc Line dressing early. My skin has become allergic they think to the #biopatch so we are Praying its just the burn there and will heal and not get worse. I had to have the Picc Line placed about 6 months ago with no numbing or lidocaine bc of #mastcellactivationdisorder so we are Praying I can keep this one a little longer. And, Praying it will heal just fine and no risk of infection! I was going to post a picture of it, but this picture is far better! Praise God for sweet Harper! We Love You Lord. Thank you to everyone Praying for us and leaving comments and messages. The picc is in my right arm and it is hard to text with it because sometimes painful and Im trying to not make it mad lol. So talk to text is very new to me and I'm not very good at it. So thank you and we love you!! God Bless.❤🤗💕
Praise God! So thankful we are home and I get to hold Harper close. So thankful for my husband. Thankful for all those at the Hospital that helped us. Thankful to God for listening to me while in that MRI machine. I talked to him the whole time. We Love You Lord. Praise Jesus for my little family and for carrying us and getting me back home tonight when I wasn't even sure how I would make the move from car to wheel chair. Praising God for strength and Praying for good results. We are pretty beat....so thankful for a bed to lay our heads. Thank you to everyone Praying for us. Please Lord let us always keep our eyes on You.❤
Blood work and MRI tonight. They aren't sure if my body is up for the MRI or other certain things going on will impede me getting it. My left leg is doing a very weird spasm as well. Had a fever and a bit of a rough day, but GOD IS BIGGER! I'm so thankful for Harper being home with my mom and getting to eat eggs since I will be out of the house for a few.(I'm allergic so she never can unless I leave lol) Praising God for Dorian and Praying he gets to feeling better really soon. Praising God for the medical staff and Praying they will get me in and out and back home! Thank You Jesus for another day to try. Please be with us through this. "You carried me through, on Your shoulders black and blue." We Love You Lord. 💕
Dorian was actually at Urgent Care all morning. He has not been feeling great for a few days now. Been masking up to be around Harper and I. He had Chest Xray and tests run. He is coughing up bloody mucus. They put him on prednisone and antibiotics. Praying this passes for him soon. He takes such good care of us...I wish I could do more for him. He only went because he had fever and chills last night and he was nervous he would give to Harper and I. We are Praying healing in this house. Praying sweet Harper keeps her immune system up and Praying God protects and increases our immunity. Praying for healing and some much needed and deserved rest for Dorian. Also Praying I can do my IV myself and not get too knocked down from this. We are postponing my MRI and blood work until next week. Dorian needs to rest and I don't want him making any trips. Praying speedy healing and a quick recovery. God, please keep carrying us. Please provide Your strength. In the name of Jesus Christ. Amen. ❤🙏
I tried to find a song to put to this journey we are on together and to make you a small video. The truth is...I can't pick just one. Today has brought so many mixed emotions. It is our 8 year anniversary and for 5 of those years I have been pretty sick. I'm so grateful for this life we have. I'm so grateful for you. I'm more in love with you now I think as each day goes by. It honestly hurt to look back through all of these pictures, but it also reminded me of how sweet life is. You have given me a real life love story. I wrote down some lyrics from each song that reminded me of you and they all seem to be about protection and love and survival. I think that may be because of the time in our life that we are in. Here are a few from each song: "When you bleed, I bleed the same. If you're scared, I'm on my way" "I would march down an empty street like a ship into a storm. No surrender, no retreat I would tear down every wall, just to keep you warm, just to bring you home." "Even superwoman sometimes needed super man's soul" "I will never give up" "Hold on I still want you, come back I still need you. I just want to hear you... saying baby let's go home." I struggled with this for a few days now. Putting music to our love in this moment. And to be honest, no love song written can sum up how I feel about you. You have saved my life since I was 22 yrs old and you were 29. You continue to show me what true love is every day. I love you so much and I'm so thankful you are Harper's Daddy. I know you are a part of me, body, mind and soul and I'm so grateful for all the good times we have. And, I don't think I will ever be able to apologize enough for getting sick. I know you say it isn't my fault, but life was so sweet and I'm so sorry. I will fight every day to get better. I know God will give us a new season very soon. God is holding us in His hands. I Pray you always turn to Him and I Pray we always keep Him at the center of this family. We love our little girl so much and I'm so grateful we get to experience this life together with her. Thank you for every day and every night. You never let me face anything alone. You are my always and forever. I Praise God❤
Harper put this necklace on me today. My sweet, sweet girl. So thankful for her love and that I have the Honor and gift of being her mama. I have not been feeling as well lately. These next coming weeks are going to be a little busy with more doctor appts and MRIs and blood work. We have to go for a special MRI for my ovarian endometrioma that I have had for almost 5 yrs now. Harper named him Samuel and he will sometimes grow and rupture. Along with many other ovarian cysts from stage 4 endometriosis. It is pretty painful and I have alot of burns on my legs and belly because when they rupture I can't take pain medicine. Just hot water bottles. My skin, being so sensitive is scarred in many different areas. Dorian and I are Praying they will one day go away, but in the midst of the pain, I just want the steaming hot water bottle to dull it a bit. We had to have it evaluated last year at Dana Farber Cancer Institute and now have top Surgeon at Brigham and Womens keeping an eye on it. I have not been cleared to get surgery to take it out. They don't think they can safely put a breathing tube down my throat and anasthesia may be a problem. So, our surgeon who we love, is going to run some tumor markers and get an MRI to make sure all is still stable. It has evoked a sort of feeling of dread in me. How will my body even make it to the hospital for MRI and blood work? What will the results be? I'm scared in all honesty. I also have to go to my mast cell doctor whom we love so much and that is a very long trip, but we know it is necessary. I am thankful Harper will be able to stay with my parent's and spend a fun day. I worry most for her. Every move I make, I try to think of how this could shape or mold her, or stick in her memory. I know in these moments is when I feel God the most. I know sometimes I Pray so hard and then I still worry. I'm human. But, God has already gone ahead of me. I know He will fight these battles and carry me.I am Praying He pulls us so close and breathes some energy into my body. Every. Single. Day. I Pray to be thankful and keep trying. I am so thankful for Harper and Dorian. I'm so thankful God is so much bigger than this.
❤ This is so very true and resonates with me so much. Grateful: Praise God for waking me up, Breath in my lungs, Love in my heart, My vision to look out this window, Sunlight, Harper, My little girls feet on my leg as she softly snores. The ability to try again The gift of hearing so I can hear Harper's little voice and her sweet pitter patter as she runs donwstairs, My husband loving me, Kind people, My oxygen, My picc line, The ability to Pray. No matter what. Food, This body, This life, Knowing You are with me, Thank You Lord for everything. In Jesus name Amen. @sheilawalsh1 posted the picture and it resonated with me so much. Thank you for posting this and for all the wisdom and Prayers. God Bless you. Praying everyone has a wonderful day!