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

Sharing Words


I wanted to share a blog post from another mother that has a beautiful daughter with the same genetic disorder as Reese.  When I was at my lowest my mother emailed her asking to reach out to me.  Laura was truly a blessing during that time emailing me and just knowing there was someone else that had/was experiencing such struggles having a daughter with a rare genetic disorder.

Anna & Essie: Finding Strength Within Yourself

A few things in her post that really hit home to me were:

“You don’t have a choice but to be strong. You either get strong or you break”–I didn’t choose to be this strong advocate for a special needs child but I am because I want the very best for Reese.  I know Reese is depending on me… and to what extent I advocate for her will determine her quality of life!

“I also think that if she’s not fully healed and restored that she is STILL a testimony to God’s miracle working power”–WOW!  I believe this to be true for Reese as well!  Reese brings so much joy with her smile and perseverance for life.  Quit frankly she humbles me and puts me on my knees.  When I think of why me God… she smiles… when I think will she ever really communicate with me… she laughs out loud…. when I think does she know what’s going on… she responds…

“If I focus on tomorrow, I’m not okay with today”–this is so true for me because I begin to worry what Reese will be like in 5 years…. will she be mobile, will I be able to physically take care of her if she doesn’t walk, will she talk, will she ever go to a sleepover with other girls…. you can see this list can go on and on and really break you down.

“…we just don’t think of ourselves as a special needs family all the time. We’re just a family…who happens to have a special needs child”–I pray that I can get to this point one day.  I’m not there yet… as I’m working on a blog post now titled “Reminder” but with Laura’s words it gives me hope that I to will achieve this one day!

I have this scripture attached to my computer monitor at work:

I praise you because Reese is fearfully and wonderfully made!   Psalm 139:14

HAPPY FALL Y’ALL! 

Acceptance

Wow! I have so much to be thankful for, I truly do. I just received a promotion to a position that was my long-term goal of achieving; I have a beautiful home, a loving/helpful husband and a precious little girl Reese McClain. I have really good days and then I have those days that just are really hard in every way. Some words I’m going to share may seem harsh or sound ungrateful but that is not it at all. I’m simply trying to be as truthful as possible in sharing our journey.

Being a special needs mom is HARD and quite frankly it can just suck at times. I don’t know what happens differently in those days that are harder than others. Is it the mom that grabs her kids face telling the toddler to shut up, sit down and not move while waiting for her prescriptions at the pharmacy? Is it the mom that complains because her kids are involved in so many activities? Is it the mom that is pregnant unexpectedly with her second child that acts like it’s a huge inconvenience in her life? Is it seeing children Reese’s age walk/talk? Or is it reading facebook post from other families with a XQ28 duplication children that is heartbreaking, scary and overall just makes me sick to my stomach what our future could hold?

After hearing the news that our child has a rare genetic disorder that can cause severe mental and physical disabilities, many people have very kind words. However, one comment that really hurts me, and I know people are meaning it in the most kind and precious way is, “you were meant to be a mom to a special needs child.” Really? Because I don’t understand that nor comprehend how I am “meant” to be a mother to a special needs child. I love Reese McClain to the moon and back but there are a lot of extra steps we have to take daily. When people say this to me I want to say, “Well, I actually think the same about you, I really think you’re cut out to be a parent to a special needs child too.” My point is NO ONE is “meant” to be a parent to a special needs child. I would agree that maybe my personality/drive is a good characteristic to have as a special needs parent and I would agree that having a great husband with family support is awesome. But I would disagree that because I have these components, it warrants me for a special needs child.

I have had many people tell me “No one knows what their child’s future holds” and this is true. However, parents of children that are born healthy and physically and mentally develop on time have a better chance of normalcy. Those parents will never know what it’s like to see your child in the hospital numerous times; try to figure out the most effective way having medicines prepared, spending 1.5 hours to put your baby down every night, make doctor and therapy calls constantly and fight for your baby to receive services so that they may have the opportunity to walk and talk. They will never experience the heartache, the daily thought, will my child walk and talk and the overall frustrations of fighting for those services!

Reese is not crawling, walking or talking.

Reese IS smiling, laughing out loud, eating well (table food)—trying to feed herself, sleeping thru the night and engaged in all therapies. It’s the very small milestones that I must continue to celebrate and be thankful for… it just can be very hard at times. I know without a doubt that God has a bigger plan for Reese and my family than I cannot imagine. I know without a doubt Reese will run to me jumping into my arms and saying “Mommy, I love you”… my timing and God’s timing are just different. I share this with you—NOT to make you sad or pity me but for you to maybe understand the journey I’m on with a special needs child.

God says “For I consider that the sufferings of this present time are not WORTH comparing with the glory that is to be revealed to us” Roman 8:18

I can [and I WILL] bathe in the Psalms, drink the Gospels and surround myself with HIS promises. The Bibles tells us that his word never comes back empty. When our hearts are nurtured in God’s word, his word will be honored. If you would please pray for all those parents of special needs children that our hearts/minds stay strong in the word. That we continue to be given God’s grace and find peace within the word… that we WILL NOT allow Satan to steal, kill and destroy our happiness. Thank you from someone who does Consider it Pure Joy my friends.

GREAT Report

8 Days since Open Heart Surgery

Reese McClain had a check up with the cardiologist today and received a great report!  Reese still has a little fluid around the heart; however, the doctor said that was normal at this point.  They removed her stitch from where the drainage tube was–she fussed a little!  Overall she is healing great and we are just so ever thankful to God!

Sing to Him, sing praises to Him; meditate on and talk of all His wondrous works and devoutly praise them! Glory in His holy name; let the hearts of those rejoice who seek the Lord!  1 Chronicles 16:9-10

HOME

We are so EXCITED that Reese McClain was discharged from the hospital yesterday!  I know, it’s crazy–only 4 days including surgery day!  Kyle posted on Facebook: “Wednesday afternoon my daughter had open heart surgery and they stopped her heart, looked around inside, closed her hole, restarted her heart and 3 days later they sent her home. God is amazing! Glad to be home, she’s still on oxygen but doctors think she’ll wean off in next couple of weeks. Thanks everyone for all the prayers, messages, and phone calls”… We were amazed and just so thankful for God’s blessings!

The doctors planned for the unexpected with Reese because of her condition.  They put a “central line” in her neck–to administer medication/fluids quickly.  The doctors informed us they normally do not do this but wanted to be prepared–and they did not have to utilize the central line.  They also told us to be prepared for Reese to be on the ventilator for 24 hours and it was removed 4 hours after surgery!  Can you see the pattern… it gives me goose bumps… God was so in that operating room and ICU room!!!  I continue to pray over Reese asking God to comfort her and surround her by angels because I believe we fight a spiritual warfare everyday!  It’s a daily task of putting on the armor of truth.

Ephesians 6:10-18

10 Finally, be strong in the Lord and in his mighty power. 11 Put on the full armor of God, so that you can take your stand against the devil’s schemes. 12 For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. 13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God.

18 And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.

On our way home… sleepy girl…

Reese is home and loving it…

My Lovie!

Go CATS!

One of my best childhood friends has been by my side thru all the ups and downs this past year.  Her friendship has meant the world to me and really helped deepen my relationship with Christ–I thank you Meagan for all the encouraging words!   She sent me this the day after Reese’s surgery–God is with us all we just have to ask him!!!

Psalm 139:7-10

Where can I go from your Spirit?
    Where can I flee from your presence?
If I go up to the heavens, you are there;
    if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
    if I settle on the far side of the sea,
10 even there your hand will guide me,
    your right hand will hold me fast.

Set YOUR Feet to Dancing!

There is no other way to explain Reese McClain’s successful surgery and road to recovery but thru the power of God!  It’s truly amazing and we cannot thank everyone for their words of encouragement and being a prayer warrior for us–truly a blessing!

Kyle mentioned in the previous post about how we were told what to expect after surgery but I wanted to touch on it from a mother’s perspective.  Many that know me well… know I’m a planner… So, I googled images of 1 year olds that had open heart surgery trying to prepare/wrap my head around how I was going to see Reese.  NOTHING prepares you to see YOUR child with so many wires, monitors, tubes and ventilator hooked to them.  The room was so bright and shared by another baby with just a small rolling curtain separating Reese and other baby.  Beeps were going off constantly and I had one of those moments were it feels like everything has just stopped… and you lose your breath.  The nurses told me that I could talk to her and touch her… I didn’t know what to say because I knew if I said anything that I would start crying (I was trying to be strong and not cry)… so I reached for her hand…  Then Reese started to try and open her eyes and got really upset because of the ventilator and held her breath…. she turned purple and I had to sit down–crying.  I couldn’t take my baby girl being so upset because she knew her momma was there but was scared.  It’s THE HARDEST thing I’ve ever done.  As I’m sitting beside Reese’s bed.. I’m just asking God “please give me enough strength to stand by my baby girl, ask the nurse questions and let Reese know everything is going to be ok”….

I went home that night and Kyle stayed behind to be with Reese I told a dear friend, “I’m not strong enough for my own daughter” because they were going to remove the ventilator but she had to be fully awake (would be upset) for 15 minutes or longer–I simply could NOT handle her being so upset… I thought I would pass out!  Her response, “But Jesus is!  Good news, sister.  you don’t have to be strong enough”!  That is sooooo true!  I am not strong enough without God… I could not find joy each day without his hope, I could not love on others when my heart is broken without his grace, I could not hope for my daughters future without his promises!  So it was only for a minute that I worried if people would think I was a horrible mother for not staying her first night in ICU because I wasn’t strong enough.  God works in amazing ways… but he was with her… her daddy of course  was there and Reese was being cared for by the best doctors/nurses!

Cast your cares on the LORD and he will sustain you; he will never let the righteous fall. Psalm 55:22

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
2 Corinthians 12:9

If you are in a situation where you are taking care of someone else… or helping someone daily–I encourage you to recognize your limits.  Limits are NOT a bad thing… and I had to learn the hard way.  The very first time Reese was in the hospital I didn’t leave her side and it took a toll on me mentally and physically but more mentally.  I love my daughter to the moon and back and would do anything for her and I’m blessed to have so many wonderful people to help me out!  Therefore, I now accept that help when I wouldn’t before because before I thought I could do it all on my own and I CANNOT!  It’s ok… to say I need some “me” time.  When we first start discovering Reese had medical issues–I just forgot about myself in everyway–horrible idea.  I am now proud to say I’m back to working out, which I enjoy so much!  I walked everyday I was pregnant–it’s either time with friends or when I’m by myself God and I have long talks!  I joined Weight Watchers to get back to that healthy lifestyle eating so I can offer that to Reese as well.  I think many people often think it’s selfish to leave a little time for mom or dad but it’s healthy.  God tells us our bodies are temples for him–treat them as that… and being healthy physically and mentally is obeying his word.

Do you not know that your body is a temple of the Holy Spirit, who is in you, whom you have received from God? You are not your own; 1 Corinthians 6:19

I did pull an all night shift the 2nd night and Reese got to be moved to a regular room and out of the ICU.  It was a pretty good night… we had to do X-Ray and blood work at 3:00am… and she slept thru all respiratory therapy.  I just hated to see her in pain–broke my heart.  She is such a little fighter and is doing an amazing job!  The cardiologist team says that she did perfect–A+ (everyone knows momma likes A+’s) and the pulmonology team said that there were no signs of pneumonia.  We were a little concerned that she could get pneumonia because were were not able to do our normal “vest” therapy and suctioning.  All  checked out well and respiratory therapy is in full swing!


As a mother you don’t want anything to be wrong with your baby… or any type of forever (mark) scar.  I really put too much energy and thought into Reese’s scar because I didn’t want her to be different, have a reminder of her heart defect, etc.. but guess what… once again, God taught me a lesson.

So, God created man in his own image, in the image God Genesis 1:27

As for God, his way is perfect; the word of the LORD is flawless. He is a shield for all who take refuge in him. Psalm 18:30

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:14

I have always dressed a little more conservative so Reese wearing one-piece bathing suits will be just fine!  She is just adorable in a pink one-piece–Love!


And so my baby sleeps–letting her body recovery and making her heart whole and healthy!

There has been so much beauty during this difficult time.  So many people pulling together to pray for Reese McClain–a true God thing… the continued growing into a woman of God.  I am so far from perfect but I am so full of God’s peace and grace–my feet are set to dancing!

Life isn’t about waiting for the storm to pass; It’s about learning to dance in the rain! 
So, go dance my friends!

“Let them praise his name with a dance” Psalm 149:3

Pre-Surgery

Reese McClain went for Pre-Admission testing today!
Open Heart Surgery is scheduled for tomorrow at 1:00pm!


Reese’s Meme Mem’s and Aunt Sassy had the privilege to take Reese McClain!

This is Reese McClain being sassy with her mommy about getting a picture before bath time!

Of course, everything still goes to the mouth–even her letter “R”

I asked Reese to smile with her doll–Ruby.  She decided to smash Ruby’s face!

This is making up with her doll Ruby!

We met with the surgeon Friday, August 17th and felt very comfortable with him taking care of our baby girl!  Of course, Kyle has done some research on him–he is an amazing doctor!

Many have asked, am I nervous? and I worried? My response: It’s completely out of my control. God has already taught me a huge lesson on that. I know God’s will–will be done to glorify him.  Reese is God’s child and on loan to me–I must follow his instructions.

“Cast all your anxiety on him because he cares for you” 1 Peter 5:7

“And the peace of God, which transcends all understanding, will guard your hearts
and your minds in Christ Jesus” Philippians 4:6

“For the Spirit God gave us does not make us timid, but gives us power, love and self-discipline”
2 Timothy 1:7 

Reese will be in the ICU for 1-2 days depending how she starts to recover.  We will have our family taking turns staying with Reese because it’s physically and mentally exhausting to stay in a hospital 24/7.   The doctors are unsure of how long her stay will be–depends on how she recovers but thinking 5-10 days.  We truly appreciate your prayers and support during this time.

My example for tomorrow–check it out! Luke 2:37

My Constant Reminder: Reese McClain is fearfully and wonderfully made in HIS imagine! Psalm 139:14

Praise God

We are so excited that the full EGG confirmed there is NO seizure and/or epileptic activity–
Praise God!

This little family is overjoyed with such wonderful news!

Photo By: Elizabeth Lauer

Sing to Him, sing praises to Him; Speak of all His wonders… 1 Chronicles16:9

Please continue to pray for Reese’s upcoming open heart surgery Wednesday, August 29th!  We cannot thank you enough for your prayers and words of encouragement–it truly takes a village!