Reese’s Christmas List

So, what’s on Reese’s Christmas List this year…

The most important item I was looking into purchasing was this–

Kid Way Gait Trainer

Truth–I broke down crying when I was suggested that I should look into getting Reese one of these. So many things went thru my head–huge equipment, she is not going to walk, screams special needs… However, if it’s going to help her learn to walk–I’m game. Thank goodness Reese’s physical therapist wasn’t the first one to mention this to me because I’ve broken down on her enough… I’m sure she was thankful I held my composure when she suggested a gait trainer. We believe this is going to be covered thru some of the services Reese is receiving, which would truly be a blessing since this would cost approx $2,500.

Chewy Tubes with handles–good for sensory

Sensory Balls

Time to start cleaning teeth and the electric toothbrush is good for sensory as well…

Ball Pit fit for a princess–more sensory activity…

Of course, Reese will need a cute UK outfit!

Lastly, I will probably get Reese a baby doll–what’s a Christmas without a baby doll!

I never thought I would have to ask the therapists what would be ideal toys for Reese for Christmas. We want to get her things that will help her develop and met her full potential. Getting Reese just any toy isn’t ideal because she has a tons and doesn’t even play with them. Reese loves to read and we have tons of books. Reese also loves music so I am looking for a musical/sensory toy–therapist is suppose to send me some ideas.

My mom likes to get the grandchildren 3 gifts–like the 3 Wise Men… so, I picked these items…

Engraved Silver Brush and Comb Set

To match her pink North Face Jacket

Baby Einstein Aquarium–has lights and music!

Others have asked what they can get Reese, which is so nice because we can give them suggestions that would beneficial for Reese.

Barney DVD–Raindrops

Baby Neck Float used for therapy

Diapers

Johnson and Johnson Product

Aveeno Baby Product: Especially the Eczema because Reese’s back gets very dry

Owl Mat that we can use for tummy time

and lastly, nothing that she needs but Mommy loves…

Matilda Jane gift cards for her spring/summer wardrobe!

We must remember the real reason for the Season and that is Christ the Lord! Luke 2:9-14

Reminder

Well, I wrote this blog post on October 18th (day before we headed back home from Disney) and I’m just now getting around to posting….

I wonder if there will be a day that I wake up and I am not reminded my Reese McClain is different. If I stay at home all the time with Reese–I feel this could be achieved but not possible.

As everyone tells me how precious Reese is (that has no idea her circumstance) I tell myself: Reese is adorable–must be true because they have no idea anything is “different” with Reese.

Then there comes that time when you’re “reminded” in the airport with a girl the same age as Reese who is walking, talking and feeding herself grapes. So you’re sad, cry, pray and receive a new day, new grace from God.

Disney was fun but I was reminded often. Little feet walking, little ones responding and Reese sometimes responding. Those times she responded I will hold close to my heart and play them over and over as it keeps me alive. She laughed and laughed at the goofy bus driver as he welcomed us and told us the stops we would be making before getting to Old Key West Resort.

Then the grandparents take Reese and come back with a story: a woman asked how old Reese was…responding 15 months. She said, “I’m a speech therapist and thought she was delayed because she wasn’t holding her bottle” reminded once again. So, now I wonder do people say she is adorable because they realize she is delayed… feel sorry for a young couple with a special needs child…

I know I will not have an answer until I get to heaven–Why Reese. I do think Reese blesses me daily. Humbles me (The other night I broke down crying over a man who I did not even know his name but knew he had a serious health condition and had a hard life). She smiles and kicks her feet all the time. She doesn’t speak but I know what she wants how to take care of her needs. Psalms 25:9

It doesn’t stop a hurting heart but God does and will continue to provide comfort. I am so blessed to have so much encouragement and loving support BUT I still want to know why. Wouldn’t you? Imagine your child having a disability. How would you respond? What would you think? Would you think about their future?

As I write this post I’ve looked back on the facebook comments I received when I wrote about seeing the little girl at the airport. I appreciate the comforting/encouraging words. No one will understand/experience “your pain” in any situation. I’ve been told my situation could be worse. This is true but that comment had come from mothers of healthy children. I’ve been guilty of saying “that’s horrible situation for X” but unless you’re in the situation you do not experience the continuing heart ache.

I didn’t have a perfect life prior to the discovery of Reese’s genetic disorder but I did not long for Christ to come as I do today. l think thru this experience God has drawn me closer to him. How blessed I am for God to want me so close to him before his coming home! Come Almighty Father how I want to kiss your feet and hug/laugh like a child in your arms! Psalm 127:3

Hope you enjoy some snapshots from the Happiest Place on Earth!

Day 1

Day 2

Day 3 (Cousin Mason)

Day 4

Mickey’s Not So Scary Halloween Party

Day 5 was a Pool Day

Explains the sad face moments before arriving at the pool

Day 6

Day 7

Helicopters, Commercials, & God

I am what my wife, family, and even co-workers would say is a very laid back person. I get excited for vacations, UK basketball games, and eating or cooking barbecue. I stress over very little and I only get mad at left lane drivers (looking at you Indiana) and windows computers (please just get a Mac, your excuses are becoming annoying).

Ever since Reese came into our world, my stress still hasn’t jumped as one would think, but my worries are different. For years I have made fun of helicopter parents. You know, the ones who follow their child from room to room and are always within arms reach. They constantly worry over every tear, every cry, and every runny nose. They strap them to leashes when they’re out in public and won’t let them play anywhere or with anything that could possibly get the child hurt.

I have become the helicopter parent. At least from the worry and medical sense. I try to ask everyone who visits Reese if they’ve washed their hands, I check on her constantly while she sleeps, and I pray no one I come in contact with is carrying some super bug that could hurt my precious girl. Reese is medically fragile with a capital F. Sure, she’s gotten healthier and stronger the last 6 months. It’s easy to see how well she’s progressed and think everything is going to be fine. Many people love to tell Elizabeth and I this. Sometimes I even start to believe it.

Yet it only takes one look at a facebook group we belong to of parents who have children with her genetic disorder, to understand things might not ever be normal. Their are heartbreaking stories of the epilepsy, the hospital visits, and the many therapies it takes for our children to develop. Just last Friday, I received an update on a 5 year old boy who has the same genetic disorder of Reese who passed away. Just reading his story had me crying at my desk.

Last night Reese started getting fussy and had lots of mucus in her nose and we used our suction machine to help keep her clear. Our big worry is it getting into her lungs and pneumonia returning. We have suctioned more mucus out of her in the last 12 hours than we have in months. She’s very fussy but has no fever, yet we can tell she doesn’t feel well. This is where we had to make a decision, do we go to our regular AMAZING pediatrician or take her to emergency room? With this much mucus, we decided a trip to the ER was needed to make sure everything was ok. We’ve been down this road before and waited for a fever to come and when it finally does, it jumps quickly and without warning.

So off to Kosair Children’s Hospital we went. As I drove her there, I was reminded of a commercial we see in our area for Kosair. It’s on constantly and it’s of an elderly man who went to Kosair often when he was a little boy and grew up to be a doctor. He ends the commercial with “I’ll bet I’m one of the oldest Kosair kids around.” I’ve seen that commercial a dozen times and every time I’m reminded, I have a Kosair kid too. I never thought my life would be that way. Spending weeks at a time in a children’s hospital was so foreign to me. I’m a control freak and I have always hated hospitals. These days I walk into an ER I’m no longer intimidated by the machines, nurses, and doctors. Today I walked in and within 10 minutes of triage the nurse said, “Well you sure know your daughter’s details.” As I write about it now, I’m amazed at how God has humbled me. He’s reminded me that it’s not about me and I’m capable of way more than I ever thought.

Thankfully, our ER visit was a short one. Reese has an upper respiratory infection along with an ear infection. She got another x-ray and some suction at the hospital. We’re now home with antibiotics and lots of rest. We pray it doesn’t get worse and this infection passes. We pray for healing and put our trust in God’s plan. May his glory always be revealed in everything we do.