This week has been difficult for me for several reasons. I have felt myself grieving more than usual and wishing for things that I don’t have. Not wishing for “normal things” like a bigger house or newer car; but wishing for things like health, peace and a different journey.
This is Hannah’s week for IVIG but we have done things slightly different this week since Dennis has a conference to attend in St. Pete. We have stayed at the beach resort with him and driven into downtown each day for Hannah’s infusions. As nice as the resort is I didn’t realize how difficult it would be on me emotionally and mentally. You see, it is very family oriented. Lots of families on vacations and it has broken my heart to see the “normalcy” of the family dynamic that I so long for and grieve over daily. We have seen families splashing in the pools together, playing on the beach, eating out, roasting s’mores over a campfire, watching the sunsets, watching outdoor movies and many other things. We can’t do most of those things with Hannah due to her sensory processing disorder, low immune system, impulsivity and of course the dreaded nightmare disease called PANDAS. Hannah can’t handle the crowds, loudness, and busyness. She has no boundaries and in all honesty she does what her brain tells her to do and it is usually the WRONG thing. Between her anxiety and extreme OCD she is very hard to manage and control in public. In fact, at times, I wonder if she will ever be able to be out in public and conduct herself accordingly. Until you have lived this life, you cannot fathom how hard it is on this mama’s heart, and my heart aches for any mama that has to go through this. It is a very isolating and lonely existence.
Some days my grief gets the best of me and I have to take a timeout just to allow myself to grieve the loss of dreams I had for Hannah and wishes that I still long for. Our life is not what I envisioned or hoped for and in keeping up with the whole transparency thing I have going here…..I wish things were different.
I wish for:
No obsessive compulsive acts or thoughts
The ability to be out in public without meltdowns, rage, sadness and anxiety
Time alone with my husband……a vacation for just the 2 of us
Going fun places and doing fun things with Hannah
School and church…..the 2 things Hannah wants to do more than anything
Not having to travel monthly for hospital stays for treatment but instead fun trips and vacations.
Family times with immediate and extended family members
Fun times with friends and their families
A break from doctor visits, medications and procedures
Living, laughing and loving life
I could go on and on but you get the picture and now it seems it has turned into a whining session so I will stop. I am thankful we have seen some improvement with Hannah but I guess I live life waiting for the other shoe to drop. We have such a long road ahead of us that some days I only see the sad and lonely instead of the hopes and wishes of the future. Some days my heartache and grieving overpowers the hope that I pray is to come. Please bear with me as I put my heart out here in writing…..again, my therapy and for those that choose to read my ramblings; I thank you for walking this journey with me.
Praying my grief becomes less and my wishes are one day fulfilled. Until then, we keep pressing on this journey in front of us with the hope and strength that only God can give!
Until next time……..