Being the parent of a child with IBD is a roller coaster. I hope this post will be informative, inspiring and remind all of you that you're not alone. There are many others going through challenges very similar to yours. Hang in there! This post is written by a mother of a son who was diagnosed with IBD at 20 months of age.
My journey with finding lasting healing for Landon, while still maintaining a career, jumping in head first to help run The Love 4 Landon Foundation, managing a household, making efforts to keep friendship's alive, having a loving relationship with my husband AND finding a tiny bit of time for ME has not been easy. As a matter of fact, it's been the hardest thing I have ever been through.
As of now, my son Landon truly is doing well. I'm thankful every single day we wake up for the healing he's found. It doesn't stop the chatter in my head though. When you are a parent of a child with a chronic illness, you never really relax. It's a balancing act of remaining optimistic while still being aware of watching for any kind of sign or symptom returning.
Every single day I think about his poop. Has he pooped yet? How many times has he pooped today? Were they normal? Were they soft? Did they smell different? Was there any mucus present? Are those flakes of the kidney beans he ate at lunch or is that {gasp!} blood? Is he more gassy than usual? What does his color look like? Is this rash related to his medication or is it a normal kid rash? Is his tummy distended? Are his lips pale? Is he lethargic? Does he seem to have his normal energy level? Is he grumpy because his tummy hurts or is it just normal 3 year old grumpiness? What will I do if symptoms return? Am I ready to delve in and do FMT again? I think of these things every single day. When I am at work, I even text my Mom (who is with him on the days I can't be) inquiring about his poop. Luckily, she gives me good details and sets my mind at ease. Thanks Mom!
Often times people see Landon now and assume he's all well and healed. I can't tell you how many times I've heard the phrase "I'm sure he'll grow out of this!" or "He looks so good! I know he will be just fine." You know what? No. He won't grow out of it. This is an autoimmune issue. It isn't something he will ever outgrow. We hope to have him symptom free for many years but with something like this, the future is undetermined. You know what else? There is no way you can know he will be just fine because we don't even know that! Please, if you're reading this and have a friend or family member with an autoimmune issue, don't ever say these words to them. For those of us going through this every day, those words are very hurtful. It absolutely diminishes the trails and difficulties we are faced with on a regular basis.
I'm an optimist by nature, I used to even be a bit of a Pollyanna. Now, I consider myself to be optimistically real. I understand on a much deeper level the road ahead. I'm ready for it and I will face it head on. My husband will face it with me and we will always advocate for our son. Together, we will make sure he always has what he needs, nutritionally, medically, spiritually and otherwise.
I understand now why people who have a child with health issues or other special considerations often times end up in front of a judge seeking a divorce. Things like this can absolutely tear you apart as a couple. You don't have any time for each other because you are both 100% focused on your child. Your relationship is pushed to the brink, emotionally, physically, intimately. You stop talking and connecting. Sex. HA! What is that? Those are the facts, as ugly and frightening at it may be. Luckily, for my husband and I, we weathered it. It was difficult to say the least. It still isn't easy but it's a whole lot better than it was a year ago. We are connected again and we do love each other dearly. We are committed to one another, to our son and to our marriage.
I hope this post doesn't come off as negative, as that is not my intention. I just wanted to give you all a small glimpse in to what I deal with, while letting you know you aren't alone if you have any similar feelings. I AM grateful, every single day, for my husband, for Landon, for my family, for my friends, for my job, for the air I breathe. Sometimes, I even think about the person who built my desk or paved the roads I drive on and I send forth gratitude for them, whoever it was. I choose happiness, love, contentment and goodness for my life.
Thank you for taking the time to stop by IBD BLOWS!
