Tuesday, April 27, 2010

Living with No Regrets; From the Heart of a Heart Mommy

This past winter has been a challenging one in many ways. As you all know, we have been living as shut-ins since September. We have chosen to do this to keep Eli healthy. I’m so proud to say that since then, Eli has NOT been sick once! When you stop to think about it, it really is a miracle. Most pediatricians will tell you that kids will get an average of 10-12 colds a year. Eli had one in August, and none since! WOW!! We receive some relief in knowing that our hard work is really paying off.

While living as shut-ins, I know that we have offended many, hurt others, and broken some hearts. We have said "No" to visitors more than we could have ever wanted. We've even suffered permanently broken relationships because of family who do not understand our measures. Trust me, there is nothing worse than telling the kids’ grandparents they can’t come see their critically ill grandson. Jason and I haven’t been to a social function since September. No birthday parties, no Christmas parties, no church, no family gatherings….nothing! It has been so incredibly difficult not to be a part of the social world. I have learned to do most of my shopping online. Grocery shopping, Costco runs, and picking up prescriptions have all been added to Jason’s list. The only places the kids and I go are to doctor appointments.

The hardest part of all of this is seeing Paige miss out on so much in her developmental years. She hasn’t seen many of her friends in months... so long, many are forgotten. She's can't even tell us what color hair they have, any more. She doesn’t get to go to the park, the zoo, or AWANA. She doesn’t go to the grocery store. A fun outing for her is CHCC for one of Eli’s doctor appointments. How fun can that possibly be for a 3 year old? We so badly want to enroll her into gymnastics, but can’t. She should be in pre-school, but can't. She should be freely playing with her friends. Instead she can’t, “in case they have germs.” And she knows it. Paige has a great imagination and loves to play with her brother. She watches over him like the wonderful big sister that she is. She is an amazing kid, and we are so very thankful that she has an easy going, curious, fun, loving character. It certainly makes dealing with our situation so much easier.

I know many have wondered why we've taken such extreme measures. "Why can’t you come to church?" "Why can’t Paige play with her friends if they have been healthy?" "Why can’t the grandparents come see their grandkids? It’s only a short while." Trust me, we’ve heard them all. We’ve often asked ourselves the same question. But we always come back to the same realization. What if? What if a visitor has a cold or flu virus that isn’t infecting him/her, but infects Eli? Just because you're not sick, doesn't mean you're not a carrier.What if Tanya gets sick with a simple cold? Who will care for the kids? Jason has to work. Due to babysitting limitations, Paige actually had to stay with a friend once, and only once. She got sick, and was quarantined with grandparents and friends without kids for two weeks! What if Eli were to get sick a few weeks before his next cath lab? Will that make him fail yet again, meaning there is NO chance at surgery? As parents we have to weigh all of these options. Every single time we're asked if someone can come visit, or if Paige can go to a party, or we are offered dinner, we consider all our options. The only answer has always been the same answer. We cannot compromise. We have to live our lives with no regrets for Eli’s care. I don’t want to fail the next cath lab having a “what if” in the back of my mind. I have to give Eli the BEST CHANCE POSSIBLE to be a candidate for his next surgery.

If you are one of those people who may have been offended in the process of us living with no regrets, please look at our situation from our point of view. If you think you understand, multiply that burden by 100. It has not been easy for us. But so far, we have no regrets for what we have done. And we will continue to live this way, until we feel it’s no longer necessary.


Bonnie said...

Dear Friends ~

No regrets on this end either!

We love that Eli has survived beyond everyone's expectations. We have the joy of seeing him grow ~ blessed with pictures of his ready smile ~ only because you have carefully controlled his exposure to the germs that would easily take his life.

I am reminded of the time in the Old Testament when Moses is feeling the pressure to meet the needs of everyone around him. He asks God for help. And God says to gather up some people (70 to be exact) ~ a very select few from the thousands who were on the journey.

Then God told Moses in Numbers 11 that He will take some of the burden from Moses, and allow these friends to "bear the burden of the people with you, so that you may not bear it alone."

I hope you know you are not alone. Although we cannot be with you, we carry the burden of raising Eli and Paige. Praying for you, encouraging you, and seeking to understand the journey He is laying out for you.

Love you all!


shannonhoriuchi said...

While I do not understand how hard/not fun/sacrifical/whatever this has been for you guys, I fully understand your decision and couldn't fathom questioning it. You guys have been amazing and I believe you were right to handle things the way you did. How could you not give your child every chance at a healthy life? We support you in any and every way we can. Love you guys.

The Cipolla Family said...

Bonnie said it perfectly. As a mommy of a little boy who shares Eli's birthday, I understand your decision making and thought processes 100% from someone not actually living it. I would do the exact same thing and think you guys are just amazing parents. That shows your level of unconditional love for your family and that nothing is more important. I think you are to be commended for your efforts and just want you to know that you've got TONS of support and TONS of people praying for you. Keep up the good work - you're doing an unbelievably good thing! Praying for continued blessings for your family.

Ashleesmom said...

I know everyone on the Kehler side of the family understands and wants what's best for Eli. We all want him to live above anything else. Yes, it hurts not to see you guys, but it is soooo worth it for Eli's sake. We love him. And personally, I couldn't live with myself knowing that I got Eli sick because I insisted you let me or any of my family in. You are doing the right thing. A parent protects their child at all costs to themselves. You both are amazing. Love you all so much.

Laura and Family

Carrie said...

You guys are great parents. You are doing the very best for Eli even though it is so hard. Just want you to know, whenever I invite you guys to anything, I understand that you can't come. But I want you to know you are invited and that we haven't forgotten about you. And I am looking forward to the day you will be able to come to even the simplest play date :)

Andrew said...

You guys have some guts that I have a tough time even imagining. I never thought I'd see staying home as such a courageous thing to do! :-) Keep being an inspiration to those around you, and keep making the right decisions for your little ones!

Anonymous said...

I can't even imagine what it must be like to do what you're doing, how hard it must be to be so isolated. Don't worry about Paige. She'll have relationships with her family that are rock solid. You are always in my prayers.

Tamara B said...

Hi friend. I'm so thankful that you shared. As I read, I kept thinking that Eli's health and chance at surgery is worth more than Cubbies, worth more than dinner, worth more than a social gathering. I'm so proud of you guys for valuing his life more than earthly fun!