Sources of strength.

Another special needs mom who has her child at Pediatric Minds asked me the other day how I've managed through Ian's challenges. I don't think about that much because if I do, I'll get overwhelmed, like I do with so much going on in our lives right now. But answering her question I realized the main source I've derived my strength throughout this journey thus far is primarily from my little angel boy, his sister, and his Daddy. And of course friends (old and new) and family, I don't know what I'd do without them all. I can not count the number of calls to my parents who listen time and time again to my cries and frustrations. And my Mother-in-law who is always there to help around the house, so happy to be there for us. Just amazing. Drinks with friends are so important. Especially those with kids with needs. Sharing of info never stops the moment we arrive until we shut the places down.

And my sweet children are so completely amazing. A good example is this morning. Ian needed a blood draw for a specific test that most labs don't do so we had a service come to the house. The guy was totally late, I was completely nervous as to how it would go and running late, which always adds to my stress level. He arrives, we lay out the 6 tubes for collection (yes that number is not a typo!) and he explains how to hold, etc. My little man starts to fuss while the phlebotomist is prepping his arm, which always stresses him out cause he knows what's to come. I start singing and am holding on for dear life. He pokes, gets it on the first try (the guy was def worth the wait and being late!), more singing and then out comes my sweet girl. She had gone down the hall to avoid hearing Ian's screams. Now that Ian was a bit more calm, she brings his favorite Penguin ABC book out and begins to read to him. The tubes slowly fill, I continue to hold, she reads on and makes him laugh. We are all singing and reading as the last of the tubes fills. And as he pulls the needle out, Lila grabs the seahorse I had hidden behind the pillows and Ian's happy legs start pumping! (he hadn't seen it in months as it's kept for just these occasions) Lila proceeds to get her guitar and serenade Ian as I finish up with the Phlebotomist. Amazing! Everyone is happy and the stress level drops... until we start running for the car ;-)

Yesterday afternoon Mike helped out arriving before I had to leave to pick Lila up from camp and bring Ian to the Osteopath, with Lila in tow. He agreed to work from home, waiting for the dishwasher repair man (we've been without for about 6 months not wanting to spend the money to fix or get a new one but finally gave in and got a deal on fixing it). Things financially are tricky for us and have been for a quite some time. All the while my wonderful husband is completely supportive of me taking Ian to all of these alternative docs, trying supplements, powders, anything that friends say worked for their children. I try to get the best deals on things and I do get reimbursed for as much as possible. I spend hours on the phone with insurance reps, being as nice as possible, while I ask them to resubmit bills because they didn't reimburse the right percentage. And they are so helpful. Thank goodness we have insurance. And here's Mike, always supportive and completely appreciative that I'm trying to figure it out, this complex child's care, all the while we struggle.

But our sweet boy continues to amaze every doctor and therapist he sees. The list is daunting from just 1 of his multiple conditions but we refuse to go by the list. This boy will prevail. He will do it all in his own time. I don't know what's working but I've got to keep it all going because something is. And I am so extremely fortunate for all that I have.

The last note is that I almost had my sweet girl get hit by a car yesterday. We were walking in a cross walk, I was pushing Ian in the stroller and she ran ahead, skipping in her happy way to beat us to the sidewalk. I saw the car and screamed at the top of my lungs to her. Thank God she listened and stopped. He had slowed but had gone right through the cross walk and anticipating making a right on a red. 1 second missed and he would have hit her hard. I embarrassingly let him have it, totally out of control with emotion. We all cried and a great lesson was learned by all. But at that moment, I realized nothing else matters. The progress, health and safely of my family is it. And what an amazing family I am blessed with.