No Matter What, Be Thankful

Today I am sitting in the hospital for the 17th straight day/night. It's Jaxson's longest stay since he was in the NICU for 45 days right after he was born. Everyone wants to know if he's going to be home for Christmas, and I don't have an answer. What I want to say is that he should be, he should be out in a couple of days. But it's Jax, and using terms like "should" and "normally" do not apply. This is the kid who saw his INR spike up to 8.8, then plummet, and now we're back up to the dose that put him at 8.8 and he's not even at 2. Let that sink in before you read too much more because that is life with Jaxson. He doesn't tell us his rules, he just does what he does.

So as I sit here contemplating having him spend his second of four Christmases in the hospital, I get a painful reminder of how thankful I need to be.

Thankful? Yes, you read that right. We may spend a lot of time at the hospital, Jax may have had 12 surgeries (and counting), and we may not know when we get to go home again, but one thing I can tell you is certain: We WILL go home. I may not have been able to say that a few days ago, but I can now. I know we will go home, and even if he doesn't get to come home for Christmas, he will still be here on this earth.

As the mom of a special needs baby/child, you make connections with other moms just like you. Usually you find moms that deal with similar issues as you, but that's not always the case and sometimes that's nice too. Right now, there are two groups of moms I feel most connected to: Congenital Heart Disease moms and Kabuki moms. And sometimes those moms are both.

A CHD mom knows the struggle of seeing your child turn colors, have no energy, struggle to breathe, sweat way too much, and have to give meds that are usually saved for the elderly. A Kabuki mom knows the struggle of sensory issues, feeding therapy, developmental delay, behavior problems and a slew of other things. And, again, sometimes the two overlap.

One thing that overlaps is something no one wants to think about, let alone talk about, and that is losing your child to the disease that ravages their body. I have mom friends on both sides who have lost children and babies to both diseases. And you know what? They would trade places with me in a heartbeat. I know they would because if the roles were reversed, I would.

Every mom is an advocate for her child. If your child is hit by a drunk driver or someone texting and driving and they become severely disabled or worse, you become an advocate for education and law reform in those areas. The same applies for medical disabilities. You become an advocate for your child, you are their voice to be heard and you will not let your voice fall on deaf ears. I've been here over two weeks and contacted a patient liaison because I couldn't get through to the doctors. I'm pretty independent and stubborn, asking for help is not something I do well or easily. But moms need help too, and moms can only do so much. And what our babies really need when they're sick is for mom to be there to comfort them. How can I do that if my head is constantly aswirl with things I feel I need to handle? So I asked for help, and I'm glad I did. I have been able to relax and enjoy this weekend with my son.

Which brings me back to the point. My son is here. I can physically see him, touch him, kiss his cheeks, ruffle his hair, hear him laugh, hear him cry, watch his personality grow, yell at him when he doesn't listen, cuddle him when he cries. There are so many parents out there who not only have to spend this holiday without their precious baby(s), but many who suffered the loss during this time of year.It's painfully heartbreaking to see people I love grieve so hard. And if it's painful for me, I can't imagine what it must feel like for them.

So, those of you who are in these shoes, you know who you are. Know that you are loved, you are prayed for, you are thought of. Not just by me, although I do include myself, but your families love you and need you in their lives. Moms like me need you to share your experiences, help us learn things we haven't come across yet, teach us what it really means to be a warrior's mom. Because, like the warrior''s of old, our tiny warriors don't always make it home either. They say it takes a village to raise a child. It also takes a village to keep the mother of a warrior in one piece when needed.

However you choose to remember those lost too soon, make sure you do it before Christmas this year. Light a candle. Let go of a balloon. Write on a rock and throw it in the river. Tie a ribbon around your car antenna or telephone poles in your area. Pass out flyers. Give out bracelets. Whatever it is that you do, be sure to do it this week. The moms of these amazing human beings that were taken cannot do this on their own and it is our job to make sure they don't have to.

So tonight I am thankful. Thankful for my own life and health, and thankful that, at least for now, Jaxson is still with us and will eventually come home. Thankful that his brother is a happy and healthy 7 year old with more energy than any 25 people I know. Thankful that I have a husband who loves me, step-sons that respect me, a job that allows me to stay by Jaxson's side and a support system of family and friends that come to the rescue whenever we need it. I will not be sad if Jax can't come home this week. Okay, maybe a little. But I will be thankful that I have him, for however long God decides, he is mine. Cherish your loved ones, tell them you love them often. Don't get caught up in "things". Enjoy your kids for who they are and who they will become. They are all amazing, regardless of ability.