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.
11 thoughts on “Acceptance”
I had a day exactly like this just not long ago. When someone told me “oh, he’ll catch up in no time.” They had NO idea the limits of his physical/mental state, they only see what he “looks” like. I feel like I have to justify everything I do for him because people just don’t get it. They don’t get what we do daily, fight for appointments, for services in IEP meetings, looks we get that say “you’re parenting all wrong”. It’s physically and mentally draining, I’m sure you know this. Praying for you friend!
Thanks friend! Continuing to keep you all in my prayers too!
I hope that you wont mind me contacting you here but I stumbled across your story while searching xq28 duplication, you see my baby daughter and myself have this duplication too and I would really like to talk to you if you are interested, so far I haven’t met anyone else who shares this with us!
I hope you and your daughter are doing well and you will be in my thoughts x
Yes, I’m so glad you have contacted me. I will email you so we can communicate.
Thanks and I hope you’re having a blessed day. Elizabeth
Wonderful remarks!! It is hard and I love your honesty! Please know that my sweet and kind mother is lending her arms and heart to that little Reese!! She would have ADORED this girl!!
Elizabeth I pray God will give you peace where Reese is concerned She feels my heart so full of joy. I know no other Reese but her. so all the things that she could have been are beyond my thinking I only know and love our Reese the light in my candle and the smile in my soul. We all love her because she is Reese ans she is special so very special sent to us to show us how to really love with no conditions attached just love her because she is Reese. Just know we are all here for you and always will be. I will not let myself shed any more tears for Reese . She will only get smiles and love and kisses and hugs and my heart and I will always watch over her now and forever and ever and ever and ever amen.
Thanks Grandmother for all the love and support! You’re amazing! Love you!
I’ve been following Reese’s story through working for the Children’s Hospital Foundation and through fellow KD’s FB updates on her, etc. I’m so glad to know she’s doing well. She is a doll! Would you all be interested in sharing your family’s story for Radiothon benefiting the hospital? If so, I’ll give you details. She’s an inspiration!
Thank you Courtney! Yes, we would be interested! My email is firstname.lastname@example.org Thank you!
Elizabeth! Wow! That was powerful and downright, awesome I read it three times !
Praying for u always! Your sweet girl! And your family! Your right! Gods got you on a journey! But Gods in control ! Keep your faith strong! And you’r eyes on him, u and Kyle both! And you will see more than you even imagined come flowing with blessings and miracles from this! I know it! I feel it in my heart just reading your words! It means so much to me to see a strong mother, and really feel your heart in your words… It’s precious and it’s strengthening all in one!
Stay strong in the word ! The word is food for our SOUL! Love and prayers for you guys ! Xoxo