When I write in my blog I write my try emotions in hopes that other family’s who have a child with a life threatening illness will see there not alone in there thoughts.
I haven’t posted in here for a while because I had to take some time to think. There has been so much going on in my world. A mother that is so dear to my heart lost her son. It breaks my heart. I can’t even begin to imagine what she is going through. It sent me into a bit of a panic her son did not loose his battle to HLH but a very rare complication. It kind of shattered my way of thinking. My thoughts had been so focused on HLH and BMT and as long as that is going ok I had my blinders on to anything else taking Liam. The world I live in everyday consists of overwhelming fear and anxiety and I had to realize once again I have no control of the outcome. Before Liam got sick that was a lot easier to swallow. The constant realization of that is a daily experience. There really is no way to sugar coat our journeys. I wish there was.
Liam is doing good but that doesn’t ease my mind. I’m not sure if it ever will. Every little thing that might seem out of the norm for him sends me into panic. There is no way to turn that off. It’s not possible and if someone out there knows how please let me in on the secret. I have faith and hope but as a mom to a sick child it’s always in the back of our minds. Liam is cutting more teeth at least I hope that’s all it is. He is walking trying to run and climbing everything. He leaves nothing untouched I am so thankful and in that sense he is a normal toddler. Noa and Hunter hover over him and praise his every move. It’s truly beautiful to see the love they have for Liam. Ryder and Liam are still best friends even though the have started to have occasional disagreements. They really are partners in crime! If Liam wants a door open Ryder opens it. If Liam wants what Ryder is eating Ryder gives him it. If Liam wants to destroy Ryder’s masterpiece Lego building Ryder hesitates but eventually let’s Liam destroy it. They are so cute together and it warms my heart to be able to see the bond grow so strong between them. I wasn’t sure if Liam would get to be Ryder’s best friend but so far life is good!
I do feel so blessed but at the same time it is hard and everyday is not going to be perfect but it’s another day our family is together. I’m not sure if going through this there really ident enough time to really appreciate everything around you but what I have closest to me I appreciate more than ever. In saying that I mean I hope that we get to let Liam experience more than the house and dr offices. Everyday he wants to go outside and play and it breaks my heart watching him point and cry as I have to shut the door and say we can’t go outside yet. I think as a parent to a BMT child or any child with a life threatening disease it is hard not to be envious of those that have healthy children. The world as we once knew it is not our world now. That life before no longer exists and I’m not sure if it ever will again. I really never struggled with that before because I think I was just focusing on Liam surviving but after 16 months of isolation it’s hard not to. I don’t want parents who have healthy children to feel bad for there children being healthy and I hope no one does. That’s no my intention it’s just part of the emotions I have gone through on this journey. I wish no parent ever had to see there child fight for there life. I have three healthy boys and I am so thankful for that and hopefully soon four.
I wake up every morning and hope for the best. That’s really all you can do.
Love Liams Momma